Laura Walsh Plunkett

The First Year

2009-12-11T19:59:00.004-06:00

Monday, December 14, marks one year since Laura passed away. I know many of you are thinking of us all during this time, and perhaps wondering how we are doing. From my perspective, it is certainly difficult not to replay what was going on this time last year…

I try so hard to consciously live out what I wrote about Hope in October. For example, that Friday night (this week I have been thinking more of what was going on in a particular day of that last week in 2008 versus the date) was the last time she was alone with Heather (for which I am so grateful) and it was our last night together. Certainly it was the longest night of my life. I start to think about every hour of that night, being with her alone in the house, as the night progressed coming to grips with what was going to happen, talking to her not knowing if she could understand me, knowing that I was going to have to take her to the hospital, but at the same time not wanting to because I realized we would never be alone again.

It is painful to think about that now. So, at the same time, one year later, I am listening to the kids in the bath, happy as can be, laughing and playing together! We just got home from their ice skating lesson, we are about to go out to dinner with Laura's family, and life is so much more peaceful and promising now.

A year ago tomorrow, on Saturday, I think of all the things that we had to go through, my brother-in-law Johnny being at the hospital right after me first thing at 6:30 in the morning, of the support of my entire family, of what her parents and sister must have been thinking as they drove to the hospital, and of the pain that everyone felt… I remember feeling pity for the doctor that had to deliver the news to me and ask for the decision on what to do, I remember then telling the family the news of what was to happen and what we needed to do, of holding Laura's hand and whispering into her ear… "Honey, it's okay, you can go now, I love you and I'll see you soon", hearing the pain in people's voices and seeing it in their eyes as I told them, and the long and terrible night ahead prior to her passing on Sunday morning… these things and many more are burned into my memory and try relentlessly to surface.

But, I tell you that this weekend could easily be about focusing on all of those things and dredging up that pain… but it will not be. It will be about remembering Laura as we do every day, realizing that she is gone and there is nothing we can do about that fact, having faith that we will be with her and each other again, and focusing on all of the things that are happening now with those of us lucky enough to be here, and of the joy to come in life if we let it!

Everything that happens to us leaves a mark… it changes us as a person. We all have, or will, lose someone we love. When that happens, we can never be the same. In this past year, I have learned that it is okay and expected to grieve and that the pain of the loss will be dulled, but will not go away. At the same time I have learned to smile and take joy in listening to kids play in the bathtub!

I have been reflecting on the year and wondering if there was a moment I should share. I remember one moment vividly… it was at the end of the Missouri Boys State program this June. It was my first year as Director of the program, and historically the Director reads a list of those that have passed on and says a few words about them. For those of you who have been there, you know how emotional it can be… every year it is. All the one thousand Boys Staters, their families, and 150 plus staff members are in the college gymnasium… the lights go dark, and taps is played immediately after. Knowing this leading up to the program I didn't know if I could do it… but I knew I had to. It turned into a highly emotional moment for me, because Boys State has been a huge part of my life. Laura supported my involvement and knew how much I cared about it. She know it was part of doing something worthwhile with your life... which she was so clearly committed to. She was loved by my friends and brothers on the Boys State staff. I thought a lot about what I was going to (try to) say. As I was saying it, I felt as if I was alone, talking to her and thanking her for the years of support… it was an incredibly special moment for me. Here are my remarks (copied verbatim from my talking notes):

"LAURA PLUNKETT
LAURA WAS MY WIFE AND THE WONDERFUL MOTHER OF OUR TWO YOUNG CHILDREN, MORGAN AND JACK. FROM THE FIRST DAY WE MET, SHE UNDERSTOOD THAT MY EXPERIENCES AT BOYS STATE HAD SHAPED THE MAN THAT I WAS AND THE HUSBAND AND FATHER I WOULD BECOME. SHE SUPPORTED ME AND ENABLED ME TO CONTINUE TO GIVE MY TIME TO BOYS STATE, EVEN AFTER WE STARTED OUR FAMILY. SHE UNDERSTOOD THE IMPORTANCE OF THIS PROGRAM. SHE KNEW MY BEST FRIENDS IN LIFE WERE FROM THE BOYS STATE STAFF. INDEED, SHE CONSIDERED THEM PART OF OUR FAMILY.
SHE DIED IN DECEMBER AFTER A COURAGEOUS AND INSPIRING BATTLE WITH BREAST CANCER. SHE DEMONSTRATED TO ME AND EVERYONE SHE MET THE POWER OF FAITH, LOVE, HOPE AND DETERMINATION.
I HOPE SHE WILL SERVE AS A REMINDER TO OUR STAFF OF THE IMPORTANCE OF OUR FAMILIES, WHO ALLOW US THE TIME TO SERVE THIS FINE PROGRAM.
I CHERISH HER MEMORY. SHE IS DEEPLY MISSED. MAY SHE REST IN PEACE."

I know she does Rest In Peace. Let us remember to Live In Peace.

I know it is what she wants.

Hope

2009-10-21T21:44:00.012-05:00

I've thought a lot about the topic of this posting recently... sorry it has taken me so long to commit it to writing.

The other night in a support group meeting at the Solace House (where the kids and I have been going for several months now... what a wonderful blessing), the counselor in my group asked the question... "Do you have hope? If so, how?"

Fortunately, I was the last one to have to answer the question... not because I couldn't answer, but because to me it is so much more than just saying "yes". I really wanted to communicate why it is possible (for me) to have hope, and also why it was always possible for Laura to have hope. So, I had some time to reflect on that while others answered the question. A few others in the room (each had lost a spouse) indicated that they really didn't have hope... that they were in such despair and shock that they didn't even know what hope was.

Much of what I will describe I learned by witnessing Laura's incredible determination. Some of which we built together (consciously and unconsciously) in the four years she battled her breast cancer. And, some of this framework I have developed for myself in a determination to cope since we lost her.

In my opinion, to have "hope" is to be able to look forward in life and reasonably believe that life is worth living and fulfilling. For all of us, it is certainly easy to feel this way when things are going well, but perhaps most important to feel this way when things are at their worst. That is when it is easiest to lose hope. I believe hope is a mindset and a framework for dealing with life that must be understood, developed, and forged in times of happiness so that it will be there for us in times of challenge.

As I sat there waiting to answer the question, particularly as I listened to those few that did not believe they could have hope, I realized that I had never been at that level... never had I been truly in despair. Even in the hospital with Laura during those final days and hours, even watching her go, even on that painful drive from the hospital trying to figure out how to tell Morgan and Jack that Mommy was gone, even during those early weeks -- nights alone, up at two or three in the morning thinking about all that had been lost, and even now during the moments that I ache for the fact that she is not here... I have NEVER felt that life wasn't worth it. I have never felt hopelessness. I never felt that I/we wouldn't be happy. Some suggest, and have suggested, that I was just trying to be strong, but truly it is genuine.

Why?... I wondered as I sat there.

Suddenly (and luckily about 10 seconds before it was my turn to speak!) I realized there were three things that had helped shaped my hope, and that always would... quite simply they are: (1) realizing there are many things that are completely OUT of my control and they must be accepted, (2) knowing that there are many things that are IN my control that must be acted upon, and (3) having a genuine belief that life WILL offer many wonderful and happy moments.... moments worthy of being hopeful and living through the sad and challenging times.

Though we never put these labels on it specifically, I witnessed Laura exhibit this outlook... and in turn I developed these traits in myself. It was certainly a struggle at times for both of us to accept her disease and the possibility that she might die. But, somehow over time we simply accepted that was part of the deal, life was not fair, and we could not change what happened. We could only do the things that were in our control. There were physical things... getting the best medical treatment, etc. But the most important thing that was in our control was how we would deal with it emotionally. We were resolved (driven by Laura) to be positive and live a normal life... and we did. In those four years, we became closer in our marriage, and our kids had a normal happy life during some very formative years. The alternative - living with anger and hopelessness - was simply not acceptable.

Having hope is so important. I now know first hand that bad things will happen. But, I also now take comfort in the fact that my hope and genuine happiness is not dependent on bad things never happening... that would truly be false hope.

If anyone is reading this, particularly those of you that are going through breast cancer or any other of life's inevitable challenges, please understand that this hasn't been easy... for me having hope doesn't mean I am always happy. It means that while it is okay and expected to be sad at times, I am resolved not to live sadly.

For Laura, it was the same. She was sad at times... but as I wrote in this blog the night she died, never for long!

One more thing... only recently were we able to place Laura's marker at her gravesite. For those of you that would like to visit her grave, it is located in Mount Moriah Cemetary just south of I-435 on Holmes Road in Kansas City. The gravesite is located towards the back (east) of the cemetary, just south of the lake and next to a stone bridge. The kids and I find it a peaceful place to visit... and the kids like the lake! There is a vase attached to the in-ground marker. Please contact me (msplunk@gmail.com) if you would like specific directions.

I want to share with you what is inscribed on her marker. The message is driven by her hope. She used to say to Morgan... "You are my heart" and to Jack "You are my smile". I wanted to incorporate this into the inscription so each of them would have a personal message and an everlasting reminder that they are truly a product of their Mommy. The inscription reads:

Laura Walsh Plunkett
May 10, 1972 – December 14, 2008

A Wonderful and Truly Beautiful
Daughter, Sister, Friend, Wife, and Mommy

We will always love you and miss you dearly,
but it comforts us to know that
your heart lives on in Morgan,
your smile lives on in Jack,
and your incredible hope and spirit lives on in us all.

So it must. And so it does.

Peace and hope to you all,
Michael

10 Years Today

2009-07-31T00:34:00.003-05:00

Laura and I were married July 31, 1999, ten years ago today. I know that today will be difficult at times for me, and I do feel a particular sadness and real void with her absence. I don't spend much time thinking about "what could have been", but tonight I am thinking about ten years ago, about the special trip we were planning to take for this anniversary, and about how we would have felt looking back on ten years and looking forward to many more. It will seem sad and strange to just have a regular day.

Our wedding and the events that surrounded it were so special. We were very happy, and everyone seemed to have a great time and was happy for us. It was a wonderful time of life, and the memories are so fresh for me even today. It literally feels like yesterday.

The night before our wedding, after the rehearsal dinner, we gathered in the house of my good friend, Randy Gray. My friends began to offer me advice, one-by-one. The only one that I remember was from my friend, and Boys State hero, Jim Whitfield. Jim had recently lost his wife of many decades, and I remember the look on his face and the pain he felt when he simply said.... "just cherish her".

I always did cherish her, and still do. I just never thought we would have so little time.

I hope we will all remind ourselves to cherish the ones we love and to find joy in the moments we share; not just the big events, but the everyday lives we live together.

May 10th

2009-05-10T23:09:00.002-05:00

Today, May 10th, was both Mother's Day and Laura's 37th birthday. Leading up to today, I didn't really know what to expect. I know those of you that knew about the two occasions were concerned about us. The only thing I cared about was making it a normal day for the kids, and not a sad one.

Morgan and Jack decided they wanted to make balloons and send them up to Mommy. They had so much fun doing it, and there was not a sad moment. They wrote messages on each balloon... Jack told me what to write and Morgan wrote her own messages. Both kids just had a great day, a very normal day... not a sad moment for either of them. Morgan had a soccer game this afternoon, her entire team wore pink ribbons in Laura's honor, and her friend Rachel brought her a pink rose.

I must admit, though, it was very difficult for me at times. It was the most emotional day since Laura passed away. It just wasn't right that she couldn't be here. She loved days like this so much... and this would have been her day. I remember her being like a little girl every time she got presents on her birthday, Christmas, etc. I just ached not being able to share this day with her.

This morning, Morgan and I were talking about Laura, as we do every day. Only this time, I broke down and started crying. I was really disappointed in myself because Morgan had been happily talking about her Mommy and I didn't want to upset her. However, she didn't get upset at all. She just hugged me, kept smiling, looked directly in my eyes and insisted "Now Daddy, remember, you have to always think about the happy times with Mommy... you just have to". I couldn't believe it. She is 8. I wondered where she got her wisdom, strength, and compassion. Then I realized the obvious answer....

From Laura.

Sorry It Has Been So Long!

2009-03-19T00:27:00.005-05:00

Hello all - I know that a few of you have looked to the blog to see how we have been doing, and I am sorry it has been so long since the last posting. I want you to know that Morgan, Jack, and I are all doing well. We sure do miss Laura, though.

Having the kids around is absolutely the best medicine. An old fried of mine sent me a note and reminded me that kids can "find such joy in things we see as mundane or common" -- so true! Morgan and Jack were taking a bath together tonight and they were just having a ball, laughing and playing a make believe "family" game with all their little plastic ducks. It was such a joy for me just to listen to them as I was folding laundry. Both kids are happy and seem to be adjusting to a new life without Laura physically with us, but we talk about her and remember her on a daily basis. She really is present.

As for me, I constantly think about Laura. There are moments that I struggle mightily with the fact that Laura isn't here and I can't be with her. There are moments that I miss her so profoundly that I try to somehow put it out of my mind. But, those are only moments. Generally, my thoughts are of the wonderful things we experienced and reflections of everyday moments that we shared. I hope that she would be proud of the way that I am trying to really live life and create a happy, safe, and nurturing home for our precious kids.

I think about Laura's parents and sister all the time, and pray for peace for them. I know that this is all very difficult, and I know for a fact how much she loved them and how important they were to her. I am grateful that I will always be a part of their family.

It becomes more clear to me every day what a blessing it was to all of us to have had Laura in our lives. Although it would be easy to do so, we should try not to mythologize her. She was a real person, with everyday faults and moments of weakness just like all of us. But, there were so many incredible things about her. She was so wonderful, and so genuinely interested in doing the right thing. She loved her family so deeply. She was just an incredible person. Her example will always be a lesson to me... and to Momo and Jack.

We have done a number of things over the past few months since the holidays. The kids and I went to Arkansas and to a Razorbacks basketball game with my uncle Marshall and we just got back from several days visiting my brother in San Francisco. Jack had his 5th birthday. Morgan is starting soccer (I am the coach), both kids are still going strong in Taekwondo (they get their new belts on Friday), and I plan for a new session of Boys State (my first session as Director). We have established new routines at home, I am keeping up with laundry and meals, slowly getting the house straightened up, but the kids probably still get to sleep too late. Most importantly, the business of living life goes on!

Our family and friends have been so great. Everyone has pitched in to help, or offered to help. Many of you have offered to help in some way, and I have not been able to take you up on it... it is appreciated nevertheless.

That is all for now... I will try to post more regularly. But feel free to send me a note anytime at msplunk@gmail.com or on Facebook. I appreciate it.

Peace to you all,
Michael

Thank You Everyone!

2008-12-21T22:46:00.003-06:00

I am so touched by the outpouring of support from everyone. It will take me some time to thank each of you personally, but until then please know that your words, prayers, presence, and love are deeply felt and profoundly appreciated. There were so many of you that I did not get to really talk to, or just spoke with you briefly, and I look forward to connecting with you soon.

I was dreading tonight. It was the first night I have been alone in the house, as the kids are with Laura's parents (Nana and Peepaw!). But, it has been a peaceful evening of wrapping Christmas presents and just relaxing. I really miss Laura and I find myself constantly reminded of her and times we spent together. But, I think the past several days of honoring and remembering Laura and bearing witness to the incredible number of people she affected has helped me a great deal.

The kids are just doing great. Today, we slept in, then piled into bed and watched cartoons and movies for awhile... and wrestled. They miss their Mommy, but they really are happy. I just love being with them.

I hope you all have a wonderful Christmas week!
- Michael

My contact information is as follows:
12475 Slater Ln., Overland Park, KS, 66213
913-314-3825
msplunk@gmail.com

Memorial Arrangements

2008-12-16T00:34:00.002-06:00

Friends --

The link on the title of this post will take you to Laura's obituary in the Kansas City Star. In summary, the visitation is from 6:30-8:30 on Thursday and the funeral service is at 11:00 on Friday. Both will be held at the United Methodist Church of the Resurrection in Leawood, Kansas. See www.cor.org for the address and other information.

I am really looking forward to seeing those of you that can make it later this week. For those of you that cannot, I will see you soon! Regardless of your physical presence, your love and support is deeply felt. I have received many emails, phone calls, and postings on this blog. I am sorry I cannot respond to every one, but I want to when the time comes soon. I have listened to or read every one of them... they are a source of joy and comfort!

For those of you that may be traveling to Kansas City and may be interested in air travel assistance, our funeral director gave me this: call 800-224-4177, use reference #2770. This may provide you with bereavement fare at a reduced rate. I am sorry I didn't have the opportunity to post this sooner. But, if you have already made plans, I would suggest checking anyway to see if discounts are available.

We had a good day! Laura is constantly in my thoughts and everything reminds me of her, and as every hour goes by I feel even more blessed to be her husband and to have made this journey with her. As I told her friend Tina today -- if I could do it again, even with knowing the pain of her loss would come.... I would! I would not trade a moment. She changed me as a person, and I will focus my life on our incredible kids just as we both have with her watching over all of us.

Now, I am going to bed to cuddle with Momo, she is sleeping soundly. I am betting Jack will be in our room when he wakes up in the middle of the night as usual, so I will leave a little space for him too!

I hope peace is with all of you.... goodnight.

Michael

Laura's New Journey

2008-12-14T20:42:00.006-06:00

Our dear friends and family -- I am so sorry to tell you that Laura passed away peacefully this morning. She is whole again in body and spirit and watching over her beloved children, family, and friends. I am so happy that she will no longer have to endure the difficulties of her courageous fight -- although she would have continued without complaint!

On Friday, as she was going through another set of MRI and CAT scans (in a very weakened state) I told her yet again that I was so sorry she was having to do this... she replied that she would "do whatever she had to do" and she also told me she was at peace with whatever was going to happen. In the end, the progression of her disease in the last few weeks was an unstoppable force -- a force we believe even the drug trial wouldn't have stopped.

There are so many things that I want to say to all of you -- and I am certain I cannot think through them all tonight. But, there are a few to start with.

First and most importantly, to those of you who are in your own battle with breast cancer. Laura would be devastated to think that her passing would cause you any doubt or fear. Laura won so many battles along the way, she overcame her disease many times. She was an unbelievable fighter and wouldn't tolerate pity from others or herself. The best way you can honor her is to continue your fight with determination, hope, peace, and joy in living your life. She said to all of us that "every cancer is unique". It is, and you can beat it... so do it.

Second, to those of you who have supported and prayed for her and us -- I am forever grateful. Your support has lifted us and continues to provide us comfort. We are going to be fine. Morgan and Jack are beginning to come to terms with this. Morgan was very upset at first, but she understands her Mommy's spirit is still with her. We are sitting on the couch watching a movie together -- and she just ate her second bowl of ice cream! She is so sweet. Jack has asked me several times if we will get to see Mommy again when we go to heaven (of course we will!). Both have asked me why this happen. I tell them the truth, that there is no reason that we can understand. But, we are all at peace and with each other and our incredible family.

Third, to you all -- It is ok to be sad.... but not for too long. Laura never was!

I will post the specifics of the arrangements when we make them. Likely the service will be held Thursday or Friday.

And, I will continue to post for Laura. I will update you on how we are doing, and on our recollections of Laura and the lessons she taught all of us. I am so proud of her.

These posts will still come signed by her, as I am using her account. I think that is how she would want it.

Peace and God's grace be with you all.

- Michael

Tomorrow is the big day!

2008-12-08T14:07:00.003-06:00

hi friends and family.....just wanted to remind you all that my first day of new treatment with this new super-charged hrtcepton. Though doctors won't give you any treatments until you have scan resuults ...I will assume once the drug hits my veins tomorrow morning , I will already assume the good is working.

Because I respond quickly to medicine, I assume this will be this way the new chemo. I not only respond quicker, but respond positively. This first dose is will be a big dose so I may not write an update until the weekend. I will write sooner an update if I can. Normally my first two or three days on a big I, this usually mean the medicine is doing great!

Blessings,
Polo

Trial update

2008-12-04T09:30:00.002-06:00

Hi Friends, Just wanted to shoot you a quick update regarding the trial and the last couple of weeks. I have not written much on the blog because there has not been much time. I mean, I have not felt strong enough to write. It looks like this whole process is going to start over for me. As I have been winding down with my pain meds and my antibiotics. These were probably the strongest meds I have taken. Even though I am off the meds as of yesterday,some even longer, I am still weak and will be weak for a while.

The first 90 minutes of my trial drug infusion will start next week. So, I will probably start to feel better, then this drug will barrage a bunch of cancer cells so I will feel bad again. Then I have two weeks of blood work, one week of 30 minute, two weeks of blood work, etc.

I will definitely keep you posted. If you don't hear from me,personally in a couple of weeks, I will have someone from my family update you. My plan is to push through this last week of feeling icky and fatigued. I also plan on writing about my big accomplishments daily...such as today, I have spent this time writing on the blog, which is big I can barely sit up without bawbling.

Ironic how none of my cancer surgeries never caused me much pain (sofar), but the gall bladder is a doozy for everyone. So rest and recover, I will. Hope your day is great!

Blessings,
Lolo

Rounding the corner, home to the new meds...

2008-11-23T07:18:00.004-06:00

Just wanted to give you all a head's up regarding the Jeff City clinical trial I am going to be a part of. It looks like I will be mended enough from the surgery so that Michael and I can get there on Tuesday and redo all the scans. I think I have mentioned before these scans are based on 2 week period of time. My last set of them was two weeks ago so they would be too old for criteria inclusion when we send my padket into Genentech (thedrugco).

Also, a reminder,that because I have had the gaul bladder out recently...the insurance would not allow me to start for 28 days from the surgery. Just another rule they have, but it seems a be reasonable.

All this being said, I am on the schedule to do scans the beginnng of this week witht actual drug in two weeks. I will keep you posted if anything changes.

Blessings,
Lolo

Jack...at TaeKwonDo Tournament

2008-11-17T07:42:00.004-06:00

Here is Jack and his over-sized trophy. He loved that his trophy was blue. He wasn't quite sure what he was doing, but at his age level, the instructors help him do the moves. It was very sweet.

Morgan...at TaeKwonDo Tournament

2008-11-17T07:39:00.001-06:00

Morgan, at her second TKD tournament. She got two trophies, one for her form and one for her weapons. She was very proud, just as Michael and her were happy that she tried hard. She is doing wonderfully. Lolo

What it looks like to start over...

2008-11-12T07:41:00.005-06:00

This is what it looks like to start all over with the hair growth process. It has been coming in for about six weeks now. It is not very exciting. In fact, I don't think it is flattering at all, however, it is me. Not sure that I will go crazy with all my hair colors like I did before. Right now it is growing in an ashen-brown. It will grow in like this for about six months and then may change texture. It is hard to tell after all this chemo, what my hair will do. But, I am learning that it doesn't matter that much anymore.

Have a great Wednesday!

Laura

All went well!

2008-11-11T20:06:00.002-06:00

Had my gall bladder removed yesterday and all went well. I usually do pretty good with surgery, and this was no exception. I can already tell a huge difference. I ate some normal food today, like bread or pasta and did not have any pain associated with eating. I also ate bland food as well. I am ramping up at a normal pace.

It is amazing that through all my cancer journey, this was the one thing that caused me the most pain. However, it is not directly related to cancer at all. I will probably spend the next week just relaxing and healing. I have doctors appointments to follow up with the surgery as well as the clinical trial.

Once we get closer to those steps, I will explain the science behind the medicine. But, if you don't mind, for now...I will just probably take it easy and write on the blog about my recovery. Once again, this is just a testament to pursuing your optimal health. I do get afraid just like everyone else, but I have to believe in my heart...that our instincts can and do guide our health.

I hope that each of you have a wonderful night with your families! I am going to do exactly that!

Laura

My sister and me...

2008-11-09T06:55:00.002-06:00

Yesterday was such a nice day. Like I mention below, I am on pain medicines that make me a little loopy so our extended family is helping with the kids and I am being babysat because I can not drive. I have not been out to do normal things for a while, but my sister needed an outfit for a school fund raiser she went to last night. So, I decided to join her because SHOPPING is MY THING!

Her theme was Irish, but the overall theme was Old World Market...or something like that. It was so nice to get out with her and being around Irish things, which remind me of my family. We got her all decked in a warm wool sweater, a scarf, hat and a killer purse. She had the rest of the stuff at home. We also got her husband, Johnny, a hat and scarf, too.

It was so nice to go hang with my sister and see her look so adorable in her outfit! I am sure she rocked the fund raiser last night. I know, in my eyes, she always rocks everything! She is amazing!

Blessings,
Lolo

Verdict is in...gall bladder is coming out!

2008-11-09T06:35:00.002-06:00

Hi friends, just a quick update on me. After all this work to figure out whether the gall bladder is still an issue, we have figured out that I should have surgery to get it removed. Ultimately, these decisions come down to the patient and for me, I can tell my gall bladder needs some help, it is just not back to normal.

Of course, at this point, some might think I have a penchant for surgery. I wouldn't disagree with any of you if you thought that, however, I think this is probably the most thoughtful process we have gone through to determine whether this thing should be removed. I feel really good about the fact that this is the best option...as we have gone through most other options.

I have been on IV antibiotics for a while to see if the gall bladder would either resolve itself or "calm down", so to speak. We figured out that the resolution on its own did not work, but the antibiotics may allow me to have a less invasive procedure when I go in. This would be having them go in laparascopically over actually opening me up and taking it out.

The ideal scenario is to do the least invasive so the surgeon is going to try laparoscopic first...then if that does not work, he will do the other. I have been on pain medicines to help reduce the pain. I am not very good at managing this as I tend to just think I should push through the pain. Maybe that is the old athlete in me, regardless, this type of pain is probably the worst I have ever felt...so Michael has been helping me with that. He is, once again, a gem!

My surgery is scheduled for early tomorrow morning, around 7am. I am not sure what my recovery will be like, but I will update the blog for you all as soon as I can. I am praying for the laparoscopic recovery, but will expect to have the longer recovery. Expectations are important to me so I always try to walk through the least favorable scenario so that I can be prepared.

What else? Oh, the reason we really pushed for this surgery now, which we did, is because the clinical trial will want me to recover from this surgery before I start the treatment. Trials are really strict so if we were not to resolve this issue now, I could be kicked out of the trial if I have to have a surgery while on the trial.

I feel like we had about twenty doctors involved in this decision...from my oncologist, GI doctors, general surgeons, radiologists, etc. However, I could not feel better about the decision or the way the surgical team is so thorough. We need to make sure my body is in optimal condition for any medicine. This is that last big hurdle to get us there!

What this means for me in the future is that I will be able to eat normal food, like pizza, and not feel physically bad afterwards. I will be able to regain energy and start working out again. However, I will be taking it really slow. I am sure my family will insist on it and I need to take my time. I haven't felt good for a while so I need to give myself some turnaround time.

Please send any positive thoughts or comments your way. My goal is to have this surgery and to move forward to recovery and keep moving toward optimal health each and every day.

I continue to appreciate all of your support and will write when I can this week.

Blessings,
Lolo

Which came first...

2008-11-05T06:34:00.009-06:00

Hi friends, I am sure most of you stayed up last night and watched the election. I did my best, but then had to catch some much needed rest. I don't talk politics, especially not on the blog, so I will just say that I hope that you all find a happy place in your heart for this election. :)

That being said, I wanted to educate you all regarding a couple of things. The first of which is related to your digestive tract. As many of you know, I have been in and out of the hospital for the past couple of weeks related to this issue. Ironically, my issues are not cancer-related at all, they are just digestive issues. They may be related to a toxic build-up of chemo, but no one is for sure. I am on the mend, but I am still on some pain medicines, which make me really tired, and antibiotics, which help to heal my gall bladder.

So through the process of all this happening with my stint surgeries and infection, we discovered that my gall bladder has sort of stalled out...meaning, it had a lot of gook in it that it wasn't releasing. The gall bladder is an organ that basically stores up bile for the liver. When we digest food, the gall bladder releases bile into the liver and we get rid of the bile and all of the waste. Through doing an ultrasound of me, I overheard the technician's say that my gall bladder was blocked so it wasn't releasing that bile.

Most people might equate gall bladder issues to having gall stones, as this is the most common of things that happens. I did not have actual stones yet, but my gall bladder was blocked, like I had stones. So, this is where that old adage "which came first, the chicken or the egg came in?" Which came first, the gall bladder being infected causing issues with the stint...or vice versa? Having this issue was very painful, at times. I have been through a lot, but I must admit, as they were trying to figure out the problem...there were a lot of moments of pain.

Doctors are not really sure if the gall bladder issue came first or the stint issue came first...they think the stint was blocking the gall bladder, but not sure. Because of all these new procedures they have...that are not considered to be surgical, they were able to go in and fix both. Because I am doing on-going treatment for cancer-related issues, they are always so sensitive with me...they want to make sure to do the least invasive things so I can get back on my merry way and get to treatment. This is great, amazing, really. This type of system was built for me because I do bounce back quickly and keep moving forward.

Regardless, I have had to spend a lot of time "being observed" in the hospital over October. Some of it I have written about on the blog, others of it, I have not. This is my personal choice, not to leave you all out of the mix. But, just because I was sick. At times, I had high fevers or was in a lot of pain as we were trying to figure this thing out. It has not been an easy road and to be honest, a lot of it is just too personal to share on a blog. Believe me, you would not want to know the details. :) I hope that all of you can understand that I am not trying to create a sense of fear on this blog by leaving things out, but a sense of hope. Like any good editor, I still get edit content in order to create the overall message...which is modeling how to LIVE with cancer, NOT DIE with it.

Because of my approach to sharing, it has come to my attention, that some small rumors are flying around that I am doing poorly or that my prognosis with cancer is poor. This could not be further from the truth. I am sorry that people feel that way or that they are worrying about this because it is just a waste of time. I hope that most of you do not feel that way, but I learned a long time ago that I can not change anyone person's fears or perspectives on cancer. I do not have any goal to change you, I just want to keep healing my cancer and generate a message of hope. I don't want any of you to think that cancer is a death sentence, if it happens to you. That is not the case, at all. No offense, but I plan on outliving most of you all anyway. :)

I know that sometimes by sharing information, this creates more questions and/or concerns. Please feel free to share your questions on the blog, as best you can so that others can learn, but also so that I can consolidate my answers. I know this blog is not the easiest to comment on so I will go out and try to work on that this week and figure out the glitches. I have turned on the "anonymous" function to make it easier, but I encourage each of you to write your names or a name on your questions, if you feel comfortable.

All that being said, my next steps are to stay on anti-biotics through the beginning of next week and see how and if my gall bladder heals on its own. The blockage to the gall bladder is open now and things seem to be working. I am able to digest food much better, yet I am sticking to the best low-fat diet as possible. This helps the gall bladder do its work to get me back to normal. I am also in a little pain as this happens because the gall bladder is making up for lost time, trying to pump out excess bile. So, I am on pain medicines until I can get off of them.

The process of getting the antibiotic takes about two hours daily and then there are the pain medicines, which require me to be away from my computer, at times. Once again, my whole family and Michael's family has pitched into help. My main goal is to be around the kids and play with them, but while on a sedating drug...I don't want to be the main caregiver. But the truth is Morgan and Jack and I are just so glad to be with each other and not in the hospital, that we will take anything we will get.

This past journey of finding my way through this digestive issue in October has had mixed blessings, yet I want to state that we have finally sourced the problem now, not just the symptom. We still don't know which came first, the gall bladder or the stint issues...but we know they were related. We also know my gall bladder will either resolve itself with these medicines or we have other options. The gall bladder is not a necessary organ...like the appendix or the spleen, it can be removed. However, we just need to resolve the issue before I actually start my next medicines as clinical trials are very strict in that regard. (By the way, recent scans still show the remaining cancer I have in my body as STABLE)

I think the gall bladder is fixing itself right now, which is how I would prefer it. I want my body to do it, not to have another surgery. So, that just takes a little longer. Yet, I get to be home with my husband and kids and I get to start building a sustainable daily life. This life includes a new vision of what normal is, it includes rest and relaxation, it includes continuing to focus on my health...but also, it includes remembering that my body has an ability to heal and wants to do so. Life is more than good, it is filled with blessings!

I plan on using the down time right now to work on my book. I always end up sharing so much on the blog that I end up being spent when it comes to working on the book. Sometimes, I feel as though it is selfish to work on the book, when I can share NOW on the blog. I am working on those emotions, though, and will try to balance both. The book is just as important because it will reach a new audience. I am excited about it and have had a vision about it since my diagnosis day almost four years ago.

Blessings,
Lolo

P.S. By the way, in case you all didn't know it, I have an amazing husband! Michael totally rocks and is so supportive...I am not even sure how I can put it all into words how great he is. He took the above picture when Jack and he were hanging out a couple of weeks ago while Morgan was in San Francisco. That is Jack's favorite ice cream...Crazy Colors.

Morgan, in her pink gear!

2008-11-04T08:18:00.002-06:00

Morgan's class dressed up in pink last Thursday, for breast cancer awareness. It was very sweet. They made cards for people in the hospital for cancer treatment and the recipients loved them.

As far as my recovery goes, I am doing well. We are just giving my body time to heal a little before I start the new treatment. I am sure we will head out to Jefferson City one day this week to do updated blood counts and then start shortly, thereafter.

We are doing well. I hope that each of you are doing well, too. I have to get Jacky to school now so I will write more later.

Lolo

Click on this title!

2008-10-30T16:42:00.003-05:00

So, if you have not had a chance to buy the book, so to speak, you can read MY THIRD LUNG online at the link I have attached. The KC Star printed a picture of me, which you will see, along with a brief summary of my cancer journey. They put that information in their actual paper. Then they were able to make the full story available online, based on the approval of my publisher. Very cool of everyone involved. Publishers don't really want to make that information available so it was very kind of Adams Media.

If you are wondering when my next piece of published work will come out, I can not guarantee anything with that yet. However, the big push for the Pass It On! mailing is going out tomorrow, with the wonderful man-power of my parents and my sister. I will have one more mailing by the end of the year, but the big part of that is over. I am still working on outlining my book so that I can get it to agents. I haven't even had time to figure out who my targeted agents are, but they should probably WATCH OUT! That is a goal for me for the beginning of 2009.

With all the breast cancer awareness things going on and me having been in the hospital for a bit of this month and travelling to Jeff City, MO for trial "stuff"...my daughter and son are starting to feel the effects of those schedule issues. So, I have promised them that I will focus my writing and blog time to when they are busy at school or at a friends.

I plan on making November and December pretty festive months for them. I also plan on getting a lot of writing done when I can, but as I said in the news interview with Kelly Eckerman...to Michael and me, the kids come first. We will take them to my treatments at Jeff City, when their schedule allows, so they will get comfortable with that and some new doctors. But, the big thing for them is having Mommy take them to school and pick them up and play all I can with them. So, that will be my first priority.

I will try to write on the blog when they are at school or when they are in bed at night. The same will be true for the book and any other writing I do with my friend Tina Herold. I will keep you all posted about my health and try to educate you about this trial, as best I can. But, please consider me to be a well person. Like the title of this blog says, this is the story of a young mother living with cancer. (The implied commment thereafter is that I am not dying with it.) I plan on being here a long time. And this plan is based on real hope and real information, not just fluff.

Thanks for reading and keeping up with my story. I hope that I can throw just a little inspiration or hope your way. My main thing is that I am trying to educate you so that you will believe in your ability to navigate through the health system. We all have issues to deal with...mine is cancer, for another person, it could be heart disease or arthritis or diabetes or obesity. Regardless of what it is, addressing the issue in a preventive and/or treatable fashion is the best thing you can do for yourself! Begin NOW!

Blessings,
Lolo

Good news!

2008-10-28T19:06:00.004-05:00

Hi friends, Just a quick update. It has been a busy week or so. I wanted to let you all know that although I was rejected from the clinical trial a couple of weeks ago...I sent an impassioned e-mail to the coordinator. It included a link to the news story that Kelly Eckerman did on me, as well as some pictures of me. One picture was of Morgan and me...it was pretty sweet.

I wanted to help them understand that I am not just a number, but a person. And that for the most part...I have done great on medicines/surgeries/etc. There has really only been one medicine that caused me problems and that was one that we did earlier this year for a couple of months. And, it is not similar to the clinical trial drug, in any way.

So, to make a long story short, it worked! Somehow, I got myself in the clinical trial. Though my doctors pushed so hard for me to get in, it was my personal e-mail that did it. The trial coordinator was amazing and responded to me immediately. He said that he would do his best to get me in and that his colleagues would also.

Then, we heard from the coordinator from Jefferson City later in the day. She said we got approval! They were ecstatic. So, Michael and I had to run down to Jeff City, MO on Friday morning to redo my scans...everything has to be done in a two-week window for these trials so my scans had expired. We did that, though, and then headed home.

The doctor has looked at the CT scans and my residual tumors are not really growing, which is also good news. I am certain that this new medicine will shrink these tumors even more and push me into a continued stable state. The neat thing about the drug is that it has the power of a chemotherapy, but it only targets cancer cells.

They will also have me do scans and reports about every six weeks so I will be monitored heavily, which is nice. Like I said, I am a responder. I do well with these types of drugs and I have no doubt that I will do well on this medicine. I am thankful, so grateful that they have let me in. I am appreciative of the opportunity to share my experiences...but, first and foremost, to keep myself healthy.

Blessings,
Lolo

If you get the Kansas City Star...

2008-10-26T18:56:00.003-05:00

Looks like I am going to be in the Kansas City Star FYI section this week. If you don't get The Star, you can still access my full story, MY THIRD LUNG, by checking out the paper online. There will also be a little story about me, my breast cancer history, and Pass It On!

The publisher, Adams Media, was gracious enough to release the story to The Star so that they can print it in full. Very kind.

Blessings,
Lolo

Out of the hospital!

2008-10-22T18:33:00.002-05:00

Michael and I got me out of the hospital yesterday morning. One of the female doctors and a nurse practitioner really pushed to get me out of there in the morning. It was very kind of them. I am still not feeling great as they have me on steroids to reduce inflammation. I am winding down off of that drug, but it wreaks havoc on my body. It makes me super nervous and causes fluid retention. Besides the fact that they pumped so much fluid through me while in the hospital, now my body thinks it should retain that fluid because of the many drugs they have me on. However, I am trying not to complain. It just makes me feel a little bad.

So, I am going to rest and recuperate over the weekend and see where I am at. I need to use these drugs to help my body to heal from the procedure so I will just take them. I will suck it up, but it isn't easy. Morgan is out of school tomorrow and the next day so we are just going to hang during the day and I probably won't blog much. I am going to see my oncologist on Friday so I will know a little more about my new meds. I will let you all know when I know....

Until then, I plan on taking it easy and getting life back to normal for Michael, Morgan, Jack with me.

With love,
Lolo

If you have Lifetime Channel...

2008-10-20T21:43:00.002-05:00

First of all, thanks so much for your positive comments to me! I know that you all rock. I also know that it is difficult for some people to make comments on this blog...so please do not worry if you wanted to make a comment and you didn't. I have a great imagination and I envision a world of supporters out there holding me up. I know there are many and I appreciate all of YOU!

Okay, now to a status update before I talk about the Lifetime movie I am now pedaling. I had a procedure today to clean out my blocked bile duct. They had put the stint in before. Actually, they had put a temporary stint in before. Then they put in a larger, more permanent one after that. Now, for some reason, there was a blockage...so they cleaned it out.

Apparently, this can just happen with stints because they are not a natural part of your body. I just have to be mindful of it, like if I get fevers in the future or something. It could be related to the stint. The in-house oncology team here is great and I spent a lot of time Friday asking the doctor questions so I could know how to anticipate the future. I don't think I will get an infection in the future...at all, however, I just always have to have that type of information so I can be prepared. That's just my way since I got cancer. I have to have all my ducks in a row and lead my medical team.

As always, with me and surgery or procedures...everything went well. The G/I doctors said I could go home today, but the in-house oncology team wanted to observe me for one more night and keep me on I/V drugs. That part is not fun because they have pumped me with a lot of excess fluids to keep the I/V open when they aren't giving me antibiotics. I have put on like 10 lbs of fluid weight. I could care less from an aesthetic perspective (I mean, once you lost your hair, vanity gets pushed aside.:) It has just made me swollen and it stresses the lymphatic system out.

Side tangent about the lymphatic system: The lymphatic system is really cool because it works to pull fluids from your appendages. Yet, with breast cancer survivors, or any cancer survivor for that matter...we have had lymph nodes removed to be tested. So, for me, I had 5 lymph nodes removed when I was diagnosed four years ago. That was on my left side near my arm. So, I always have to watch that arm that it won't get a condition called "lymphedema", where the lymph nodes near that area can't pull the fluid out of the arm anymore and it can get very strange looking.

I don't have a major issue with lymphedema because I watch it. I exercise the arm a lot and never stress it out. I can never get blood pressure or any I/V's in that arm so Michael and I are always vigilent about making sure all hospital people know this. Yet, I had my sister bring my compression sleeve down here to the hospital for me so I could make sure to keep fluid off of that arm as best I can. Right now, it is swollen like the rest of me. Everything will return to normal when I get off the I/V fluids. Hopefully, Michael will bust me outta here tomorrow!

Last thing, the Lifetime movie...so Lifetime had a great movie on Saturday night about my type of breast cancer, which is driven by the her2neu protein. I always talk about this drug called Herceptin and how it changed the face of this disease for me and my co-survivors that are her2 positive. Yet, I know it is kind of hard for everyone to understand if you are not obsessive, like me, and entrenched in the science of it.

So, I am recommending this movie to you. It is called "Living Proof". Harry Connick, Jr. plays the doctor who invented Herceptin, Dr. Slamon. They do such a thoughtful job of explaining the disease and why it is so aggressive and why Herceptin has helped. I say this being a very picky person when it comes to cancer in movies. Many movies get it wrong and end up scaring people by doing more harm than good. That is not the case with this movie. It will be emotional, but you will learn a lot from it.

I know I have been through a lot with fighting my disease, but Herceptin (and the inventions that came about because of Dr. Slamon's idea to attack the protein) are part reason to why I am able to fight against my disease. Before Herceptin, there was not much of a fighting chance for us her2 girls. It is just a blatant fact. I always think of people who are my age, but who lost their mothers to breast cancer when I was young and I wonder if they had her2 disease. I don't think all women were even tested for it before Dr. Slamon came along.

But, now so many of us with her2 type breast cancer, are living cancer free or living with a stable situation. It is because of Dr. Slamon that this reality was made possible...that we have an ability to fight. I am thankful to him and now that I actually know his name, I plan on thanking him in some personal way...by figuring out his email or mailing him a card. I will figure it out somehow.

Because of his dogged approach to fighting, my story changed to a story of victory from the beginning (plus, I believe there is divine intervention involved). Healing was always a part of my equation and even though I am dogged in my fight, tenacity pays off. Dr. Slamon IS living proof of that. I have been inspired by him and this movie...and I am a tough sell. I was skeptical going in, but Lifetime was very thoughtful. If you have Lifetime Channel, you may want to consider watching it. It will not only educate you about breast cancer, but about cancer in general. Other types of cancer use this approach, too.

You can click on the link to this post to get to the Lifetime website for "Living Proof". I will also put a link to the left. I am sure they will show it the rest of this month.

Blessings,
Lolo

Weekend update.

2008-10-19T16:58:00.004-05:00

This weekend has been kind of crazy, but I wanted to take a second to update the blog. First of all, Morgan had an amazing 8th birthday/slumber party Friday night. She also got a bike from us and she learned how to ride it already. She is amazing! Jack had a blast hanging with Morgan's friends!

Unfortunately for me, I wasn't able to be at the party or be there when she learned to ride her bike. My fever spiked pretty high in Thursday so my oncologist thought I might have an infection with my liver stent. And he was right. We came into the hospital Thursday night and once they get you in here, it is hard to get out. It took them a day or two to determine that I have an infection due to the stent not doing what it should be doing. They did a chest x-ray and an abdominal ultrasound so they were able to confirm that it is a blocked duct and they can fix the blockage. The cancer is still stable,as it was before.

My family, Michael's family, and some very trusty neighbors and friends pitched in to help with the kids. It was very important to me that Morgan have her party and that my hospital stay cause the least amount of chaos for the kids and Michael. Though Mo and Jack have had some"sad" moments...we just talk about them and help them understand that I am okay. If the stent is having a problem, then that us why I feel bad. So if I get it fixed...or have the doctors go in like before and clean out the blocked area, then that is good.

Don't get me wrong, I am frustrated that I am in the hospital and that I will be here a little longer...probably until Tuesday. But now I have the in-hospital oncology team who will evaluate me after my procedure tomorrow afternoon to make sure the stent is working well. I haven't felt good since before the first stent, but we will make sure it works and we get this issue resolved. So when I go home, I know my life can get back to normal. I have been craving normal for so long. But with chemo all summer and trying to get in the trial, we have had moments of normal interspersed with a lot of chaos. I plan on changing that for the better immediately.

I think this hospital stay has reminded me that although I want to help so many others with a positive message of hope regarding breast health, Michael, Morgan, Jack and me come first. Although I want you all to speak up for yourselves when it comes to yourselves, I guess I still have some lessons to learn too.

So I am going to spend some time while I am in the hospital establishing goals and boundaries for my family and me first...then other things after that. I will update the blog later in the week with my new medicines and new ideas. However, I don't like to be fussed over so I don't want people to send flowers or make a big deal about this procedure I am having. It is a minor hiccup in a situation where I have gone through much worse things. I am on the mend and I plan on working on building a sustainable daily life for the future.

Sorry about any typos. This post is from my iPhone and it spellchecks things in a strange way. I guess if you want to do anything for me, just send positive thoughts my way or write a nice comment. Anything more than that would not be something I wanted.

God bless,
Lolo

Feeling better, even today.

2008-10-16T07:25:00.002-05:00

This morning, I am UP bright and early. I got some great sleep, courtesy of Ambien and Tylenol PM. I took these because the steroid they gave me, Decadron, causes major sleep issues. Without the sleep aid, I would literally be up all night...and have been for many a night the past couple of months.

Anyway, I got some great sleep and woke up at like 5:30! I am feeling a lot better today from the antibiotic my doctor gave me. It seems to manage the fever pretty well. I am sure I have some unnamed infection of irrelevance, but it does not matter. When it impairs daily life, that is when I want to have it treated.

A couple of weeks ago, I was on the news here in KC. I know most of you know this. I am not trying to brag as I am not really sure why I am getting all of this attention right now. I won a breast cancer advocate award and was also in a fashion show. So crazy.

In between those times when I was involved with these events, Michael and I have been re-routing our schedule to go to Jeff City and therefore re-routing the kid's schedules. September and October have been wild months...not bad months, just busy. November will be a month to recuperate.

I am telling you all of this because I want you to understand that my fighting my cancer is still and will always be a job to me. I take it on with professionalism and candor like I would a real job. I have spent two hours this morning researching drugs to discuss with my oncologist. I am not sure which way he wants to go so I am just preparing myself.

Though the attention has been kind and I am truly thankful for it, I am also humbled by it. You see, for some reason, I get to be the messenger in this whole crazy story. Little old me. I get to find purpose throug my situation and I truly get to help other people. I am a caregiver, at heart, so I love to give.

I am working on balance in this regard, but I think my priorities are more in check than ever before and it is exciting. I am continually humbled by all the flaws I have. If I continue to feel better this weekend, then my family and I will feverishly work on preparing the Pass It On! mailing to get out the last week in October.

Tina and I also have one speaking event next week, which we are excited about. And, there is the potentially the Kansas City Star is going to reprint my story, MY THIRD LUNG, in full either sometime this weekend or next. I will keep you posted on all of that.

Thanks for your suppport and for reading the blog, but the most important thing to me is that you learn from my experience. I have never short-cutted a treatment or a procedure and have been swift and thorough in my decisions regarding my medical team. Yet, I still live with cancer...I get to LIVE with it, not die with it...because I chose to advocate for myself.

In some ways, I feel silly because my face is becoming known with breast cancer and this disease, but I put that aside because I want you to understand that your health comes first. You come first in your pursuit of optimal health and there is no time like the present to get a move on this goal!

Blessings,
Lolo

New medicines on the horizon...

2008-10-15T19:13:00.003-05:00

So, Michael and I found out yesterday that regardless of all the hoops we have been jumping through to get on this clinical trial, the drug company decided to say "no" to us. At this point, we are just glad to move forward and have a definitive answer from them.

I guess the main thing to tell you all is that although this drug may have been a good drug, it is not my only option. There are many options for me. Sometimes people get really confused about my situation because I am stage IV and/or chronic, they always perceive the worst case scenario if something falls through.

The truth with this drug is that it may be really good, but it is not good timing for me. It seemed as if I would meet one criteria, then the drug company would have some other criteria I missed. At some point, you just have to view it that the timing is off and move forward with other drugs that are manageable and doable.

So, our plan is to go to our trusty team at KU tomorrow and talk to them about next steps. Fortunately, breast cancer drugs are continually evolving so I am not sure what to expect from the meeting tomorrow. I know it will be good and I know that I will be happy to be on a new drug, but I don't really care what side effects there are. (After all I have been through recently, the meds KU puts me on may be a cake walk.:)

Let's say it makes me not continue to grow my hair back in...so what? I have lost my hair three times now and I have learned it doesn't really matter. It just isn't as important to me as it is living a pure and good life...plus, my friend, Tina, is opening her wig boutique and she will always keep me in fun wigs, if need be.

Though the last month or so has not been easy with the stint surgeries and the liver detox, it is ironic that my liver will probably be better positioned than ever to take on whatever drugs come my way.

I know I am a cheerleader and I will always see the silver lining in my story, but that is just who I am and how God made me. There is no way for me to really know all the reason why Michael and I were going to Jeff City and meeting new people. Hopefully, I was able to spread a little hope there, just like I try to spread here.

Regardless, I have still been a little under the weather from this detox. I am off the actual medicine, but am tapering off of some other drugs, which has made my past couple of days crazy. Then, I got a fever today so Jack and I have spent some much-needed rest time at my mom and dad's. However, I just wanted to update you all regarding our status.

Morgan turns 8 on Friday so we have a slumber party planned. Yikes! So much fun to be had, but for now I must rest up! More on breast cancer awareness events to follow in another post...

Blessings to each of you!
Lolo

Two new posts below...

2008-10-12T19:47:00.001-05:00

Still could not get pictures to upload from the Haute Market fashion show. I will keep working on that. For now, check out the new posts below.

Blessings,
Lolo

A little under the weather...

2008-10-12T19:35:00.004-05:00

So, this liver detox that my doctors are having me do has made this weekend a little unruly for me. I was not sure what to expect, which was probably my first mistake. The dosage is pretty regimented, along with my other medicines, so it has not been an easy couple of days.

Essentially, with a liver detox, you have to take any other medicines an hour before you take the detox. The detox, itself, is a powder that you mix in with a juice. It is highly acidic tasting, which does not bode well with me. Regardless, I am tough, so I took all four doses the first day and all four doses yesterday.

Last night was pretty rough, but I made it through...then I got physically sick this morning. So, that made for some FUN. Fortunately, Michael and I just figured out that this is, once again, one of those times that I need to take a time out from society for a couple of days. I still have to take the meds on Monday and Tuesday. My dose is reduced to 2 per day, which is nice.

I slept a lot today, at my mom and dads. Morgan was flying in from San Francisco with my mother-in-law and nephew so I knew she was taken care of...and Michael and Jack spent the day together. All I really care about on days like these when I have to take a "time-out" is that my husband and kids are happy. I want this all to be seamless to them, so they know I am strong.

Just a reminder, the purpose of the detox is to get residue toxins from the chemo out of my liver so that I can start all over when we start this new medicine. All of these efforts have been to heal my liver...they have been gutsy efforts that included two stint surgeries and some detox medicine. However, who am I if not a risk-taker.

Sometimes, I have to accept the short-term loss of having my weekend plans disappointed by being sick...so that I can grasp onto the long-term plan of healing. This is our goal. My goal, Michael's goal, Morgan's, Jack's and all my extended family and friend's.

Thanks for your continued support. Don't be surprised if I am quiet over the next couple of days. Imagine me sleeping this detox off. My kids are all taken care of and I will be too...so send positive thoughts my way and prayers! Because they matter!

Blessings,
Lolo

Why Pink/Haute Market Fashion Show

2008-10-12T19:18:00.004-05:00

The fashion show was so fun. I am having trouble uploading the picture tonight, but wanted to go ahead and let you all know how much fun it was. Jennifer Hermon, the owner of Haute Market, was so sweet to me. There were 23 different models in the show and she put me last...as the finale. She also figured out that my song is "Fighter" By Christina Aquilera and played the song while I was on the runway. She wouldn't let Michael see me until I came out on stage. It was really cute to see his face when he saw me...I was all dolled up. Not the typical tomboy look or me.

They put me in a really fun outfit. Most of the models were just regular girls, like me. I was the only breast cancer survivor, though. It was kind of interesting when the girls figured out that I was a survivor. One of them asked me how long I had been cancer- free. I kind of hesitated, but then told her that I wasn't cancer-free. That I was "chronic". It took her off-guard, but I just explained that this is how life is for me.

It is not easy...always being the girl the educate others about breast cancer, yet I guess there are worse things that I could have to do. The event was so wonderful and Jennifer was such a lovely and thoughtful host to me. I truly feel honored to have been a part of the show. My good friend, Tina, was there and we were at the WHY PINK table with Trevor and Amy Goodwin, who are doing a lot of good in the name of breast cancer. Tina is in the process of opening her wig boutique. I will write more about that in the future, but you can check her out at imwiggedout.com. She is someone who can make a girl feel pretty about having to get a wig...she has a gift for things like that so I am really excited to see how her wig boutique evolves into a ministry to help other women. That is all she wants...or I want, really. We don't want women to feel alone or isolated with this disease. It is too scary to have to deal with it anyway...let alone, the emotional isolation that can take place once diagnosed. It is so exciting to see other young survivors and non-survivors doing good to help the cause.

Thank you Haute Market, Why Pink and WiggedOut for letting me have some fun and for providing a venue for Pass It On to reach more women!

Blessings,
Lolo

CHECK OUT the new links!

2008-10-09T07:34:00.004-05:00

Check out the Pass It On! campaign picture to the right. You can click on the picture to get to the Pass It On website. It is still under construction through October, but you can email me awareness requests and/or questions there.

Also, to learn more about my survivor friend, Tina Herold, check out the links to her web site. She is a mover and a shaker, too! She rocks! We are currently booking speaking events together and outlining a book idea! Got a lot of fun things happening. She was in the Kansas City Star this week for winning a writing contest with Ribbon Chick. And, she is opening up a wig boutique that would provide an intimate and loving setting for girls like us, who had to lose their hair and were petrified that it was going to happen. Please read to learn more about her! She is amazing!

Hit the link to mypinkplanner.com. They are featuring my survivor story this month. This is a great resource for survivors to create a planner that will help other people help them! Dolores Quinn Kitchin is the survivor who started this web site. So exciting what these savvy breast cancer survivors do to learn from their experiences and help others. I am proud to be among them.

Oh, there are two new posts by me, below!

Blessings,
Lolo

Relaxing into the journey...

2008-10-09T06:49:00.004-05:00

It looks like my liver is continuing to heal...a total miracle. It is just one of many. I tell my husband I am on my fourth life now, but I am thankful to be here and to be healing. My faith in God and in my body sustains me more than I ever really talk about on the blog. I never want to appear preachy to any of you, but I know it is alright to remind you of my core strength every so often. Also, the faith that all of YOU have in me does me good as well.

I have put on about 4 lbs, which is great. That means my body is metabolizing food appropriately through the liver since the stint surgery. My energy is slowly returning. Because I am on steroids right now, my energy is affected by that drug. The doctors are using the steroids to reduce inflammation on the liver in the short term. Yet I am really sensitive to medicines and Decadron, the steroid, can cause sleep issues and sort of keep your engine revved up all day. I don't know how anyone could take steroids consistently without becoming a mean person because it definitely has made me jumpy. Roid Rage, huh?

Anyway, I keep my irritability in line, but it is kind of funny. I have snapped a couple of times, but Michael and I just laugh about it and I apologize immediately. What else? As far as medicines, both of my oncologists feel great about my liver healing. They submitted my information to the medical trial we are trying to get into and the drug company wants one of my liver counts to come in line before they let me on the trial. To them, I am just a number. To me, I am a person. (Keep in mind that ALL OF MY OTHER NUMBERS are great. This includes bilirubin, which represents that my liver function is doing great!)

So, we talked to our medical team here at KU and the team at Jeff City. Michael and I were ready to cut our losses and just do another medicine. I was beginning to think that we were trying to fit my "square" liver counts into a "round" whole...so to speak. So, the Jeff City oncologist had a great idea that Michael and I evaluated with our team here. The idea is to have me do this drug that would flush my liver of all of these medicines....kind of like a liver detox....over the next five days.

I have been wanting to do a detox for a while, but haven't because I did not want to mess with the effect of the drug fighting against my cancer. However, now it is kind of like I am getting what I want. Funny. Here is why they are thinking this could work to lower my enzyme count. Liver enzymes can sometimes be high due to toxicity from drugs. So, in theory, all of these meds that we have pumped through my body for the past four years could have a residue effect in the liver. This would cause my liver to work harder to create enzymes to process food and function and increase the enzyme count. If we take that "toxic burden" off of the liver, my counts should be more pure. They should lower.

So, we are going to start that process today. But, I would like to encourage of you not to worry. I am not worried. I am viewing myself in the journey, I am relaxing into it. This process is also part of my healing. Though I am not on a hard chemo right now, we are helping my liver purge some of the bad stuff from my body so that we can move forward and fight some more. I still think this drug is the right drug for me, however, I am open to anything if we need to switch back to another drug...I will. No one promised me that the journey back to health would be easy, in fact, no one promised me that we would have gotten this far. Yet, I continue to feel confident in my medical team, in my body, in our treatment plan, etc.

I have thoroughly interviewed and evaluated both of my medical teams and they are smart oncologists who have my best interest at heart. I constantly maintain that I am lead of my medical team, though my husband Michael could not represent me any better than anyone else in the world. I am blessed!

Okay, friends, have a kick-butt day!

Blessings,
Lolo

I am going to be a model in the Haute Market fashion show....so fun!

2008-10-08T14:27:00.006-05:00

Tomorrow night, I will to walk down the runway at the Haute Market fashion show. The Why Pink photography team of Trevor and Amy Goodwin have connected with Haute Market and because of the amazing picture Amy took of me (to the right), I was asked to be a model in the show. I will be representing the sisterhood of survivors! So exciting.

I will blog about this event after it is over. I will have Pass It On! packets there and my friend Tina, check her out at imwiggedout.com, is going to be there, too. We are both featured in the Pass It On! mailing this year with one of the Why Pink photos.

So much going on...so many connections. It is exciting to see some fun things come from this breast cancer experience. I am a little shy about walking down the runway, but I will WORK IT and have some fun! Why not, it certainly has been an arduous summer. I think I am ready for some FUN!

Michael and my family will be there. Can't wait to see their reaction to me all-dolled up! My friend, Phil, will be taking video so I will have some footage to share, too.

HIT THE TITLE TO THIS POST AND IT WILL TAKE YOU TO THE HAUTE MARKET LINK! Jennifer Hermon, the owner, is one cool mom...coordinating fashion for us regular girls. I am excited to be at and see what the event is about. I am sure I will be going to the fashion shows from here on out...I will be hooked!

Blessings,
Lolo

Fierce!

2008-10-07T16:17:00.003-05:00

I went to Target today and bought a bunch of Pink and Purple things... to celebrate breast cancer in my own way. I try to stick to the hot pinks and purples as those work better for me, but powder pink can be fun, too. Anyway, I asked Morgan to pose with me because she is beautiful and I love her. Plus, I know you all like to see pictures of me every once in a while to know that I am healthy and okay. I am. I am really good. Here is our fierce pose...

We are going to get on a new medicine this week. Not sure which one yet. Genentech is considering my case now for the trial. If that doesn't work, we will just get on another medicine this week and keep plowing forward. Michael and I are exhausted from driving back and forth to Jeff City so much, but we know that both of the medicine options would be good for us. If I don't get in the trial in Jeff City, we will just get in when KU gets the trial. I will keep you all posted and explain the medical options once I know more over the next couple of days.

For now, I am trying to celebrate breast cancer awareness every day. I am working on embracing the sisterhood of survivorship and feeling STRONG about my fight. I am one of many and I should be proud of it and celebrate that. So, I work on that...each and every day. I am wearing pink every day and we are feverishly working on our Pass It On! awareness packets to get them out over the next month. They are coming together so nicely. I am really happy with how professional they look this year. My goal is to demystify the fears of young women so that they will do self-exams monthly. That is all I want people to learn from my story.

I know most women will not have to go through all that I have in order to maintain optimal health. I am HAPPY for that. I don't want you all to have to have a mastectomy, reconstruction, liver surgery, lung surgery and chemo, chemo, chemo! I am not bitter, never have been. It is just not part of my make-up. All I want to do is share a positive message so that if any of you have to face down this disease, you can do it with strength and tenacity. Just like I try to do.

THIS WEEK...I get to model in a fashion show for breast cancer awareness! How cool is that? It will be Thursday night at the Haute Market event. I am really excited and will blog about that experience after it is over. Google Haute Market if you want to know more. I will have Pass It On! packets there and my friend, Tina, is going to be there too. I will post a link to her web site so you can learn more about her and her new wig boutique!

Blessings to each of you on this chilly Fall day! Be fierce!
Lolo

My interview with Kelly Eckerman.

2008-10-04T22:24:00.004-05:00

What is Pass It On!

2008-10-03T17:33:00.005-05:00

Since my web site is not fully up and running, I wanted to go ahead and explain the purpose of Pass It On! for you all. (Yes, it is Pass It On! with an exclamation point, because it requires action from the recipient.) The web site will be interactive by the end of the year, but what is more important to me right now is that I get you and anyone else relevant breast health information.

So, here is the Pass It On story! Because I found my own cancer when I was 32, I decided to start a grass-roots mailing effort in order to become the liaison between the medical community and real women everywhere. The purpose is NOT to spread fear as the likelihood of young women getting breast cancer is miniscule (0.4% to be exact, facts provided by breastcancer.org.)

I was walking around during one of my chemo sessions at KU MedWest when I saw these wonderful self-exam cards that the Susan G. Komen foundation created. The cards are thoughtful because you can put them on the shower and you can punch out the month once you are done. A no-brainer. However, I didn't want the cards to be at the cancer center anymore, I wanted them to be in the hands of all the women I know and love.

The name Pass It On! came about because I share a packet of information with each recipient and then I ask them, if they are comfortable, to pass a packet on to a friend. This year's mailing will include a portfolio binder with a marketing document with my personal story, a breast self exam card, a mammogram information sheet and general breast health flyer. The recipient's packet will be on the left, with the packet for a friend on the right. (The marketing document is totally FUN, has lots of pix of the kids and family.)

All medical documentation is provided through Komen. Pass It On! recently obtained a grant through Komen-KC. Before this grant, the funding for the mailing was provided through Michael and me and our extended family. However, I wanted to expand the program so that we could reach more people.

The Greater Kansas City Community Foundation has helped us with that. So has Komen of Greater Kansas City. I always evaluate thoughtful ways in which I can help women add screenings into their busy lives. We will add surveys to the program this year so I can see how things are going and how we need to evolve.

My story has been the one that we have shared over time. However, I want to provide a mechanism to share stories of other survivors. I love to write and love marketing. It comes naturally to me, but I want to find a way for other survivors to find meaning by sharing their stories, if and when they are ready. So, going forward, it will not be all about me. It will be about survivors, at any age.

The target audience for the mailing began as an effort to reach women under 40. But, the truth is that self-exams are relevant for women AT ANY AGE. Mammograms are available to everyone at the age of 40, but my thinking is this...if you perform monthly exams on your own, then you will identify the importance of scheduling mammograms and annual exams. They are all vital tools to maintain breast health. Monthly exams fill in the gap where mammograms and annual exams can't. I want to empower women to know that they are qualified to perform these exams.

As moms, wives, girlfriends, sisters, daughters...we have so many responsibilities and we tend to put our health last. Pass It On! is just a way for me to challenge women, in a delicate fashion, to consider putting their health first. Your health matters, YOU matter!

We do perform speaking events and distribute packets to schools, churches, hospitals, etc. However, if you would like to personally be added to Pass It On!, just email me at laura@passitonusa.org. You can do the same if you want to have a speaking event scheduled and/or want packets distributed to a specific organization.

Please know my goal is never to intrude or create fear. I want to mail to a willing audience and/or present to a willing audience. Otherwise, the message may not be heard. I know I have a unique situation with being a stage IV breast cancer survivor and having been stage IV from the beginning, but that is why I care about this message. I feel a burden to share...almost feel as though it would be irresponsible not to share this information.

I absolutely want a cure for this disease so that none of you have to go through what I have gone through. However, in the meantime, early detection makes the difference in saving lives. It is critical to streamlining treatment and positively affecting prognosis. Please consider adding yourself to the Pass It On! mailing.

With love,
Lolo

OP Woman Featured in Redbook

2008-10-03T17:21:00.003-05:00

Click on the title this post and it will link you to the Channel 9 story! Kelly Eckerman did such a great job of conveying my story while not overwhelming the audience with too much information. I am totally grateful to her and her team for being so professional. I will permanently add the video to the blog at some point. However, wanted to add this link for those of you who were not able to see it last night.

Thanks for all of your support!
Lolo

Web site is UP!

2008-10-02T05:59:00.002-05:00

Click the title to this post and it will take you to the new web site. It just has the basics up for now, but we wanted people to be able to email me at the web site in case they have speaking requests and/or new people to add to the mailing. Michael and I have a friend, Ryan, who has donated his time to help us get the site up and running. We totally appreciate him for this effort. I think you will see over time that he does a really great job!

The picture, on the site, was also taken by a friend of ours, Phil. He donated his time and photography skills to the campaign this year. So kind and generous. He is also going to help me create a documentary as he has a background in video work. I figure this clinical trial I am on could change the world. Why not document it to help other people see what doing treatment, scans and medical appointments is all about

Thanks to Ryan and Phil for all of their help!

Lolo

Interview with Kelly Eckerman.

2008-10-01T19:56:00.004-05:00

Last week, Kelly Eckerman and a camera man (named Allen) came to our house and interviewed me regarding the Redbook magazine article and associated Cup of Comfort for Breast Cancer Survivors book. Michael, Morgan and Jack were all there and they got lots of footage of all of us.

The interview will air Thursday night at 5pm on KMBC - Channel 9. It was such a cool experience. I will cringe when I watch it, or watch it with one eye open. The purpose is to spread awareness and a message of hope...so I will watch. Just thought I would give you all a head's up!

Lolo

Breast Cancer Awareness Month and Pass It On!

2008-10-01T13:23:00.003-05:00

Things to think about: Pass It On, my foundation, is going to be at the Haute Market fashion show on October 9th at the Ritz-Charles. I think I am going to be modeling in it....YIKES! Anyway, it is an event that costs $10 per person, but the proceeds go to help with breast cancer awarness. WHY PINK, the wonderful photography team of Trevor and Amy Goodwin, have helped to coordinate this event. It should be fun and fabulous. I would love to see any and all of you there!

Trevor and Amy were featured on WDAF-TV this morning and had photos from their campaign on the show. Once the video portion is available via the web, I will link you to it! Very exciting to see good people who are doing great things getting exposure!

Also, I was interviewed by Kelly Eckerman from Channel 9 last week regarding the Redbook magazine article and A Cup of Comfort for Breast Cancer Survivors. She will give me a head's up regarding when the interview will air, but it was very exciting. Morgan and Jack were home from school and Michael was there too. It was great to be able to share my story and my passion to help others. It is a great joy, to me, to be able to live out my passion and help others learn through my situation.

Thanks to each of you for following the blog and putting up with my preachy health advice! I just have to share! I will keep you posted regarding other breast cancer events that will unfold over the next month!

Remember, my mailing is going out soon so please send me your address at loloplunkett@gmail.com if you want to be added to the list. Our website is under construction at www.passitonusa.org, but eventually you will be able to email me there.

Have a wonderful day!
Lolo

Clinical trial status...

2008-10-01T13:11:00.003-05:00

Hi friends, Michael and I went to Jefferson City yesterday and got my blood counts. It looks like all my counts are coming in line for this trial. It is such a miracle, but I know we are on the right path. My poor liver has been through a lot, but let's remember that the liver is resilient. It actually has stem cell functionality and can regenerate! Crazy.

Anyway, because they did most of my scans a little over two weeks ago, they have had to redo a couple of scans. This is just because the clinical trial is so stringent and everything must be within two weeks of admission into the trial. So, yesterday, Michael and I spent the bulk of the day in Jeff City getting a bone scan. The bone scan involves getting an injection and then having to wait for two hours for the scan. Then, I must tell you it is the most boring scan EVER! I had to lay still for over an hour and it is so hard for me to lay still. I am a ball of energy on most days, but I endured the scan and we headed back home.

The only other scan we need to redo is the heart scan. This scan can not be done on the same day as the bone scan because it also involves a radioactive injection. They basically take my blood and put a radioactive dye in and they let it set for about 30 minutes. Then, they put the blood back in me and take pictures of my heart as the blood flows back into my heart. WIld. I have had this scan done several times before and thankfully, my heart always does well for me.

The reason they do the heart scan is because Herceptin, which is one of the drugs on this trial, can be known to be toxic to the heart. So, anyone who has been on this medicine, has to have these scans. Because this trial involves a chemo-charged Herceptin, they need to make sure that my heart can take it. In general, my heart always operates above average in this regard. I am going to be thinking positive thoughts in this regard for Friday. I am not really nervous.

So, once we get this last scan in, they will submit all of my information to Genentech for their review. It is a rigid checklist of a multitude of health criteria, however, I hit most of these marks. These criteria include my general health as well as other drugs that I have already been through. I will keep you all posted, but I am assuming that we will start the medicine next week.

I am hoping that I can document this process via video so that we can put it on the blog and you all can actually 'see" what it is like to have these experiences (the clinics, the trials, etc). My hope is always to demystify the fear of this disease so that each of you will be unafraid to address any health issues you might have. Early detection and awareness do make a critical difference in prognosis and treatment...whether you are dealing with heart disease, cancer, diabetes, arthritis, etc.

Blessings to each of you!
Lolo

Fierce!

2008-09-29T15:51:00.001-05:00

Here is a TaeKwonDo picture of Morgan. She is one fierce doll!

Lolo

Old friends feed the soul.

2008-09-28T08:57:00.002-05:00

One more thing....Heather and I got to meet up with my highschool friend, Katie and her family on Friday night. Her husband and her are both doctors and live in Columbia. Their daughter, Elizabeth, is six and beautiful. We met them for a late dinner before heading back to the hotel for a quick swim. It was a nice dinner. Old friends really do feed the soul. I hope my trips to Jefferson City for this trial will allow Michael and me to stop in more on Katie and her husband, Jonathon.

It was a great night.
Lolo

Building confidence.

2008-09-28T08:45:00.005-05:00

Heather and I took the kids on a road trip this weekend to Columbia, MO. It seems that life is putting me back into Missouri these days with travelling to Jefferson City on Thursday then turning around and going to Columbia, MO on Friday night. The Columbia trip was fun. We went down there for a Tae Kwon Do tournament. We are just trying things out and figuring out if we like Karate. Heather and I thought the tournament would give Morgan, Jack and Thatcher a bigger picture of what the sport is about. And, it would help me figure out what the sport is all about too.

Morgan, I must admit, made me so proud. She really stepped up to the plate. It is very confusing to compete for the first time and she got her form correct and then did some spot sparring, which is not something she is used to. She got stuck on one or two of her moves, but she worked through it herself. I was so proud of her perseverence. I could care less if she gets first, second or third. Fourth place, with a wonderful comment from the judge about her stick-to-it attitude, made me so proud.

Jack, who is pictured above, had to wait around quite a bit for his turn. Heather and I were hoping they would let Thatcher and Jack go earlier as they are members of the Tiny Tiger class. These are kids that are five and under. Anyway, Jack was just so cute. When he started to go, I watched him step up as well. They let the Tiny Tigers have a coach on the floor to help them with moves if they want. But, Jack didn't want any help. He just made up his own form on the spot and shouted "HIYA!" really loud. I was cracking up. The judges loved it. Of course, in the future, he would need to do an actual form of four to seven moves, but for yesterday...it was perfect!

I didn't get tp watch Thatcher because they split Jack and him up as Thatch is a little older. But, Thatcher seemed happy about the experience and was ecstatic to be there. Heather got to watch him and to video him. It was a very sweet event.

Blessings,
Lolo

Hurry up and wait!

2008-09-25T19:44:00.004-05:00

Alright, friends, we are now just waiting to hear form the drug company to know if we will make the trial. However, all signs look good that I will make the trial. I didn't get any new count updates today, but once they get that information, they will send it in to the drug company. We should know by Monday. We have an appointment scheduled for Tuesday in Jeff City at 10am for the trial to move forward. So, that is what I am going to focus on. I am going to just look toward the appointment and believe it will happen. I will write about and focus on other things, but will appreciate any positive thoughts and prayers you send my way. Life is good and I am healing!

It is all about the journey, I am slowly starting to figure that out. It is not about the end of the trip, it is what you learn along the way. I have learned that so many people love me and care about me and that I am worthy of it. I have accepted that I am an eccentric, tomboy, writer. And, I love my family with all of my heart. Though the cancer has been treacherous, at times, it is the burden that I have dealt with because I had to...a means to true understanding in this world. However, not much longer, because we are blasting this cancer out of me. We already have done so much, but there is much left to do.

Just think these new meds will allow my hair to grow back in, my weight to normalize out and I will be able to get back on the bike. Slowly, but surely, the journey is bringing me to a wonderful place.

Blesssings,
Lolo

Another adventure!

2008-09-25T08:00:00.003-05:00

So, Michael and I are headed to Jefferson City today to get my official blood counts for the trial for this new medicine. We are still not sure if I am going to "Make the cut". On all, but one criteria, I hit the mark. My liver is functioning pretty well. My counts, at least, seem to indicate this. I must admit that I don't feel overwhelmingly wonderful all of the time. I think it will just take time for me to start to feel good again. Every time I eat, I feel the digestive process going on in my body. It is a bit wild. It is not necessarily bad, just a new normal that I need to get used to.

Overall, I feel better and I think my body is metabolizing food and medicine more efficiently. My bilirubin count is in ideal range, which says a lot about the liver. It is a resillient organ...an amazing one at that. It has stem cell functionality and can regenerate. How bizarre. Regardless, my liver is getting used to the stint and I am able to eat better and my coloring is back to normal. My peach fuzz hair is growing in. And, I am going to be starting a new medicine.

If, for some reason, I can't get into this trial now...we will just start on another medicine. It is not a one-medicine world. And, of course, if the clinical trial people push back on me about the trial, then Michael and I are ready and willing to argue and petition to see if we can get in. But, if it doesn't work, we have our alternative medicine ready to go and we will just keep moving forward.

I will keep you all posted about our road trip today when I get back!

Blessings,
Lolo

Whirlwind of a week!

2008-09-23T14:35:00.002-05:00

So far, this week has been a whirlwind. I imagine the bulk of October will be like this with so many upcoming breast cancer awareness events. I am think I am starting to feel better with the outpatient surgery behind me. Sometime over the next couple of days, I will get confirmed blood counts on my bilirubin and liver enzymes. If all goes well, which it should, then I should be able to head to Jefferson City to have them do my counts and start me up for these new medicines next week.

I have to do my official counts on site at the Jefferson City location. This is because the drug company dictates that all test results must be done on the clinical trial site. I have officially been off meds for over 21 days now. I have to be off the medicines in order for me to qualify for the trial. There are so many little hoops that you have to jump through in order to qualify for a trial. I had no idea before I starting to researching this medicine that literally one small criteria can bump you from trial consideration.

However, once you meet the qualifications, then you are in the trial. It is strange to have this purging of medicine, though. I have been on medicine for so long that it has become a security blanket for me. With every little ache or pain that I have had, I have wondered if it is the cancer. Even though this last set of chemotherapy really did a lot of good in my body, I still worry that a small break from any medicines would cause me major harm. However, this trial seems to be the right medicine so taking a break is just what I have had to do.

Like I said, we have this last criteria of the liver enzyme count coming into check in order for me to qualify. The reason the number has been high is due to the scar tissue in the liver. Furthermore, I had the stint issue where my bile blockage was taking place. Now that the large stint is in, the inflammation from scar tissue should subside. They gave me a steroid in order to reduce the inflammation also. We will get the official word on all of this over the next couple of days.

So, what happens, if I don't make the cut in terms of these numbers? Well, my oncologists think this is highly unlikely, but we have options in terms of other medicines to use. However, I believe my body will be ready so that I can start another wonder-drug. If so, then I am hoping I might be able to document the trial on video so that you all can see what it is like to go to these treatments...and break down the fear of cancer.

Blessings,
Lolo

Jana Peters Life Is Good Award

2008-09-20T19:10:00.009-05:00

(A picture of me and my friend and co-writer, Tina Herold, at the In Living Pink event last night)
So last night, I won the inaugural Jana Peters Life Is Good Award at the In Living Pink event last night. This event was sponsored by Young Survival Coalition and Ribbons of Pink. I can only tell you that the night was a total blur. I know I wrote about this in my last post, but I wanted to write a little more today. I wrote and rewrote my speech over and over, but in the end, I was so honored and humbled by winning the award...I am not really sure what I said. My main thing is that I wanted to honor Jana. I truly feel as though I am a conduit, a flow-through to share information. Though I don't want to discount my accomplishments, my goal is not to achieve awards or recognition...and certainly, I did not believe I would get this award in Jana's honor.

Jana was one of the co-authors of Nordies at Noon. She and her co-athors, Kim Carlos, Patti Balwanz and Jennifer Johnson paved the way for an advocate/writer like me. They published their book while Jana was still alive. Unfortunately, Patti had already passed away from this wretched disease. Jana was diagnosed with metastatic disease just 18 months after her initial diagnosis. It is right the way this disease steals away the life of the vital and the young.

Though I have combed through Jana's website (ribbonsofpink.org) and the Nordie's web site (nordiesatnoon.com), I still find myself wishing that I had truly KNOWN Jana....that there had been time for us to meet. I had read and re-read her sections of the book so that I could be sure to prepare for the event last night. I wanted to make sure to capture her spirit during my speech. She strove to educate others while keeping cancer at bay. She had a wonderful relationship with her husband, Chris. They lived the last two-and-a-half years in her life in San Francisco, which was a dream of theirs.

When I was told I received the award, I could not believe it. I felt unworthy and as I went back to research Jana more, I connected so much with her as a fellow writer. I still felt unworthy when I accepted the award and gave my speech. Yet, I know her better now and that will help me to better advocate for others, to educate people on cancer and to write my story. Look at the impact her one life had on me, I only hope that I can help others in the way that she did.

Jana wore Life Is Good hats during and after treatment and truly believed that life is good, just like I do. Regardless of Stage IV status, my life is still good. The committee gave me beautiful pink flowers and a wonderful engraved pink statue. They also gave me a pink Life is Good shirt which I have been wearing all day. I am trying to embrace the pink and keep on keeping on!

I am truly honored to even know of Jana. Please check out the websites above if you want to learn more about the other Nordie's at Noon girls. I can't guarantee that you won't shed a tear, but I can guarantee you will be better for the experience. I will also add links to the right.

Blessings,
Lolo

So, all this good karma keeps coming my way!

2008-09-19T10:13:00.002-05:00

Alright, one of the things I don't really like about cancer is that it has compelled me to tell my story. That is why I blog, because it helps me get rid of this energy and desire that dictates what I need to say. I don't like talking about myself. If given a chance, I would much rather talk about any of you and all the wonderful things you are doing. Yet, in order to advocate for others, I have to share about myself. I hope that never seems braggy. I always try to approach it with humility, but I also want you to know the good things that can come from this disease. There are many unexpected gifts along the way.

Tonight, I will be accepting an award for my advocacy efforts at the In Living Pink dinner. The award is in honor of Jana Peters, who was a breast cancer survivor and co-author of Nordie's at Noon. Jana was a nurse and she was a fighter. After finding out I was so graciously nominated by my friends Rose and Tina...yes, I cornered them and made them fess up...I also immediately found out that I had won. The book Nordie's at Noon has done a lot of good for a lot of young women. It has helped many people to see that you don't have to actually get cancer in order to learn the wisdom of survivors.

Jana was like me. She was passionate about education. She was also Stage IV from very early on like me. She was an advocate for herself and for others. She advocated for women to do self-exams and she started the Ribbons of Pink organization that focused on educating young women to do self-exams and actively advocate for themselves.

After the nomination, I read and re-read her sections of the book in order to prepare for my acceptance speech. I was pleasantly surprised at how much we all have in common. There were many times when I was reading her and thought..."those very words have come out of my mouth before". Eerie. I must admit I don't feel worthy of the award, yet I will glad accept it. The reason I don't feel worthy is because I am alive and here and I get to live out my passion.

My passion is to help all of YOU! My passion is to educate people through my writing and other communications so that other people don't have to get a disease in order to find joy in their own existence. My passion is that you will appreciate those small moments in each little day be reading this blog or some of the other stories I am working on.

I remember when I was young, people would always say..."well, you always have your health" when things didn't seem to be going my way. Yet, now that my health seems a little shaky, I still have so much more than I ever thought I did. I have a voice in my existence and an effect on this world. Jana did too. Reading about her and just knowing of her existence really helped me to do many of the things that I am doing. She paved the way for me to survive and thrive with this disease.

Unfortunately, Jana lost her battle with cancer a couple of years ago. I hate to say it that way because it really connotes that cancer had a victory over her, when I believer she and her legacy are the real victors. I know she is missed, tremendously, by her friends and I wish I had known her personally because I get the impression we would have been great friends. She was a spit-fire like me, very spunky and vibrant...very full of life.

I have told you all that I consider my fight against cancer to be a full-time job and I take it seriously. I am still recovering from my surgery, but my bilirubin count is back in line! Yes, totally back in line. This permanent stint is doing its job. Though I feel uncomfortable throughout the day after eating, I know that my liver is healing. We still need one more liver count to come down so I can get on this trial. We believe that should happen over the next week and then I will be in the trial. I visualize myself in the trial as I can not accept anything less than that. I will meditate on my healing and believe we will get there. We have come so far.

So this awards ceremony is tonight and the wonder drug trial is around the corner. So many good things happening to me. I am truly blessed. I hope you feel the same.

Blessings,
Lolo

What to look for!

2008-09-16T16:40:00.004-05:00

This is the Redbook magazine that is coming on the shelf this week. I am on page 130! Still can't believe it, but wanted to share. I am grabbing up as many as I can, but I still need to get more. It is a really nice article and they were so kind to put our pictures and a snippet of our stories in the magazine.

Morgan was stoked to see her name in the magazine. She feels as though she is famous rock star already. :)

Blessings,
Lolo

Had my outpatient surgery.

2008-09-15T20:40:00.002-05:00

I had my outpatient surgery today. They were able to put a larger, more permanent, stint in my liver. I am already starting to feel better, but am tired from the medicines. It will take a couple of day do feel more normal. I am not sure if the Jeff City trial docs will want us to drive out there later in the week to do new blood counts, but my counts were already a lot better today...even before the procedure. Go figure. The body is pretty resilient, even under stress.

I am planning on going to bed soon, but just wanted you all to know that things went well and I am recovering well.

Blessings,
Lolo

New things.

2008-09-14T20:02:00.003-05:00

Added my other two Why Pink photos to the blog below on the right. I am working on finalizing some book signing events and awareness events for October. Though my treatment is still in full swing, there is still a need for advocacy! So, I will try to fill it. I will keep you posted on all these events. I will have my outpatient procedure tomorrow and will write when I am back at the house and recovered from the loopy pain meds!

Have a wonderful Monday!

Blessings,
Lolo

Lolo Update!

2008-09-13T13:41:00.005-05:00

Well, Michael and I spent Thursday and Friday in Jefferson City. We met with the doctor and his medical team Thursday and they ran various medical tests on me. Then I had scans run on me on Friday. I had four scans...an ECHO for the heart, a CT, a brain MRI and a bone scan. I took a sedative because the MRI is pretty traumatic. Even if you aren't claustrophobic, it is hard not to be when you have your head in a cage and a lot of metal sounds on the outside of the machine. It literally sounds like heavy artillery being shot at me in a random fashion. Horrid! They even give you head phones, but it doesn't matter. The only thing that helps is semi-sleeping through it so that is what I try to do.

I think we have jumped through most of the hoops to get on this trial. We had a series of questions for the doctor there, the main thing being that he would be comfortable with working with my oncologist here in KC. I want my medical team to expand, as it needs to...I don't want to have to exclude my old team. In fact, I just won't do it. The trial may be run be a site here in Overland Park, yet they are wanting me to transfer everything to them for a year and basically not keep contact with my oncologist. Not sure that I understand that.

I had our insurance company try to make me switch last year also. They said he wasn't on our plan. So, we have forked out a lot of our own personal money to keep this team because, quite frankly, they have proven themselves several times over to SAVE MY LIFE! I am not really putting that in all caps for you all, but for the doctors or the insurance companies who would try to make me switch for sub-par medical care. I am not sure they realize this, but my life is hanging in a delicate balance right now. I can not get my choices wrong. So, I won't.

My story is not about dying from this disease, but about living with it until I can find that magic bullet to blast it out of my body for good. That does not mean I don't have bad days. To be honest, this week hasn't been very good. I have had digestion issues because the benefit of my stint is wearing off. It is a small stint so we did not expect much from it, yet it is horrible to feel as though you are hungry, yet you are not sure what a food you are eating is going to do to your digestive system.

Anyway, because of this problem, my bilirubin count was high when we went in for the bloodwork on Thursday. However, this is not a non-starter. This does not mean I can't get in the trial. Besides this residual liver issue, I have never really had been symptomatic with my disease. I have endured side effects from medicines, but my actual cancer has not caused me many, if any symptoms. Funny, huh? I am a great candidate for this trial. My heart is good and I tolerate meds with minimal side effects. It is a targeted drug that goes after my type of cancer...so what are we going to do about the counts?

Well, this is what happens when you have a great medical team (and a great husband). While I was in scans Friday, the Jeff City doctor's office got a new appointment for my next bile duct stint, which was very kind of them. However, none of us were happy with the lateness in appointment (about 10 days out from now) because this would push my being on the trial out for a bit longer. We have to give the liver some time to work the excess bile through my body before we do blood counts again.

So Michael called my oncologist at KUMED to see if he could help because he knows my the surgeon. Michael left messages with everyone on our doctor's team and told them of the dilemma and they were able to work with the bile stint surgeon (real title, unknown to me so I hope that does not sound insulting - he is a guru to me) to get me in this MONDAY morning at 9am. Yes, I said Monday morning at 9am! There was a late cancellation so the pushed me right into the appointment. (On a side note, I am not sure how you could cancel with a doctor like this because there is usually a need for the procedure, but I will not question it too much.) Michael and I were so ecstatic because, mostly, this will minimize my days of discomfort. But, if things go like clockwork I could start the trial without a glitch in Jeff City, MO the following week. There would be no delay from our original plan.

We will call our team in Jeff City on Monday to let them know of this change in scheduling. They are very kind and courteous, hardworking. We can tell they want me in the trial because they want to help me. They were never possessive of me, even offered to let me come back to KU once they are able to get the. However, the drug company would not allow that. This is okay because Michael and I are not immune to weekly travel. The infusion time is short and I owe my life to Genentech. They created Herceptin, which has helped me and so many of my friends. You know there used to be so many stories and movies about young women getting breast cancer and dying young because there is nothing they could do for them...well, Genentech is one of the drug companies who has changed my story and the story of many of my lovely friends. They are running this trial and if they want me to stay in a specific spot, I am fine with it.

So that is my plan and that is what I will pray for and meditate on. Sometimes, these bends in the road (like with my bilirubin) are actually just bends in the road, not ends to them. Sounds cheesy, but it has been true with me. There is always an option...sometimes you just have to do the hardwork to get there. Thank God, I am a hard worker, huh? :) Because the Jeff City site is one of the first places to get this trial going, I could be the first woman in America to be on the trial. How cool is that? I can put that on some credentialing list for advocating for my own health. Now, keep in mind, I would much rather have good health than to have credentials in fighting so hard for it, but that will come in time. I am sure of it.

If I am a little quiet over the next couple of days, it is because I don't feel great and/or I am recovering from this surgery so don't read anything bad into it. There is nothing bad about it. We are chasing this cancer out of my body and that does not come without side effects. I will definitely write when I can and I will be as open and honest as possible. But, God has made my body resillient and I will be back in action as soon as possible.

Oh, and the Redbook is out...the one with me in it! Yikes! I will post the cover in another post...if I can figure out how? Diane Lane is on the cover, but I am in the middle! ME! So exciting and humbling. Thanks for reading the blog and ask as many questions as you would like.

Blessings,
Lolo

Here is the book I am in!

2008-09-09T13:33:00.006-05:00

I have attached an image of the book that one of my short essays is in. The book is coming out tomorrow and I am working on coordinating some book signings during the month of October. My story is called My Third Lung and is listed as the second story in the book, as I was first runner up in the contest. So exciting! The first place winner and I, along with the second and third runners-up. will be featured in Redbook in October. Very cool!

I will keep you posted when I get book signings set up so hopefully some of you can come to the event!

Blessings,
Lolo

Update!

2008-09-08T20:46:00.004-05:00

So, I have found two other locations that my trial might be taking place at...so my researching continues. These two locations are here in KC so it would be much easier for me to juggle my life and treatments if one of them works out. I am trying to get in contact with those locations to determine if either of them could take me on the trial. In theory, it is the same trial as in Jeff City, MO so they should be able to take me. It is just that getting in touch with all the right people and getting things coordinated can be a bit chaotic, but I will keep plugging away and keep you all posted. I plan on being on this medicine at one of the facilities! I am determined.

I am still a little sore and I am having some digestion issues. Yesterday, I was down-and-out...so to speak. I barely made it through church, just felt bad the whole time. Then, I came home and slept quite a bit. However, I think I have realized that this stint I have in is pretty small. They plan on going in and changing it to a larger stint in a bit, but for now, I will just have to be kind to my digestive tract. I am going to try to juice veggies once a day to help with this.

Sometimes, I think all of this is such a pain and I do get down. Yet, I have no other choice. I am alive and am able to spend my days with my family. I live a pretty good life for someone who is technically "unhealthy". The road back to good health will be a long, but that doesn't mean I need to feel defeated on this journey. I have decided to that I will do whatever it takes...so if that means I need to juice veggies and avoid certain foods, then I will just have to do it. All in all, I don't really care too much about food. I just want to eat to be healthy.

Today, my sister, my mom and my friend, Jennifer, came over to help clean my house. Because I have had such low energy while winding down on this chemotherapy and having to do the bile duct stint surgery, they have decided to help me keep the house clean. It was just so kind of them. Even though I was still in my jammies, Jennifer let me lay on Morgan's bed and tell her what to toss or to give away or to keep. Then, we moved on to Jack's room. My sister folded laundry before her animal advocacy meeting and my mom cleaned out our playroom and cleaned up the rest of the house after Jen and Heather had to leave.

I am amazed at the love that was shown to me by these three women who I admire, just when you start to get down...three angels come your way and raise your spirits. That is what they did for me. They expect nothing for it, just for me to get well. So, that is what I will do.

Blessings,
Lolo

Feeling better...

2008-09-06T18:56:00.002-05:00

Hi friends, just wanted to let you know I am feeling better. It takes time to recover from bilirubin issues, but I am getting there. I am on task to go to Jeff City later this week to get scans for this trial. I am stoked! I really want this medicine, can you tell? Anyway, I have been relentless about my medical care since the beginning so I guess there is no reason to stop now.

There is a possibility that the study will be available closer to us so I will look into that, but for now, I am just glad that I made the first hurdle of acceptance with the clinical trial coordinator and now they have booked scans for me. All scans have to be redone for the trial, it is like anything else at other facilities don't count. So, I will have a CT scan of my chest/abdomen and pelvis, an MRI of my brain (ick!) and a MUGA scan, which is a scan of the efficacy of my left ventricular function of my heart.

I despise scans, but I am becoming friends with them. After all, they have saved my life many times over and I chose to go to a facility that uses them for staging cancer so it is my own fault. I am proud of myself in that I asked for sedation on the brain MRI because it is pretty scary. This is the one where your whole body is put in a tube and scanned for about 30 minutes. The scan is very noisy, it sounds like heavy artillery is being used on the outside of the MRI machine so it is very hard to relax. I am not normally claustrophobic, but even the bravest of souls would be claustrophobic in this setting...so I am opting for a little sedation to help me relax and I would recommend it for anyone who ever gets a full MRI.

Alright, I will write more later. Right now the kids are settling down to watch a movie and I am going to try to relax. Please be sure to check out my new picture from WHY PINK? I have a couple of others to upload to the web site. They did a great job on my photos. Very exciting!

Blessings,
Lolo

Fatigue.

2008-09-05T08:30:00.002-05:00

As I am coming off of the major side effects of chemo, the one side effect that lingers is fatigue. Sometimes the fatigue makes me feel bone-tired, and I truly mean I can feel tired in my bones. I am sure there is a medical reason for this, but I don't really know what it is.

Today, I feel much better...however, every so often, a cloud of fatigue sits over my activities. It threatens to overtake my day, but I just keep moving forward and pull myself through it. On days like yesterday, my legs feel like lead weights and every activity requires a significant amount of energy on my part.

I can tell you that I know this will change. What is happening is that the fatigue is the one characteristic of chemo that build over time. So, even though I am getting this last chemo out of my system, the fatigue will stay around for a while. It will probably be a day-by-day thing. For instance, yesterday was a bad day, but today seems to be better.

It will probably take a couple of months for me to feel normal, but I will just live how my conditions are in the current day. I will let this energy dictate what I should do during the day. I will accept the help of others to keep my house clean and to get my mailing out and to do all the things I need to do. This is because part of my journey is about letting people in, about accepting love from others. So, I do my best to accept the current conditions of my body.

So, for today, I am going to work on writing and preparing for the "pass it on" campaign. I am also going to meet with some people regarding an upcoming speaking event in relation to breast cancer awareness. Life keeps moving and I will move with it.

Blessings,
Lolo

Fighting cancer like it's a full-time job?

2008-09-03T19:12:00.003-05:00

So I have come to the realization that my fighting cancer nearly takes the attention of a full-time job. I am not complaining as there is nothing productive that can come from that type of behavior. I am just letting you know that I approach my disease as I would any job....with professionalism, completeness in care and thoroughness in research.

With the pending change in medicine approaching, I spent last weekend researching clinical trials that might affect my health. There is a new drug being tested called DM1. I assume if this drug is successful, then it will get another name that is far more difficult to pronounce. :) However, until then, DM1 is the name.

We tried to get me on another version of this trial about four months ago. However, we were not successful because my liver enzyme counts were out of whack from the cancer that had grown on it. Over time, my liver enzyme counts have gotten better. This bile duct surgery that I had recently should help to bring most of those counts down for good. However, the liver enzymes are extremely reactive...to everything. So, my counts were always high while on the chemo and that is typical. My counts switched from being high based on cancer to being high based on the chemo.

Regardless, I felt slighted because I didn't make the cut in this first trial. I am so competitive. I try not to show it to the outside world because it can be an unattractive trait, when out of balance. However, this is me. I am competitive at my core and I don't like getting a bad grade or being rejected on a clinical trial. I like to be the best that I can be and I want the best medical care.

Let me stop and clarify that I absolutely believe I have the best physician for me. He is so thorough and kind. He has hundreds of patients, yet he always gives me his time and 100% of his focus. If I send him information about research, he will always follow up. If I need other doctors, such as in the bile duct surgery, he sends me to the best one he knows and asks them to expedite the surgery as best they can.

I believe in him and trust him implicitly because over time, I have learned that he believes in me. He is always up-to-date on the latest medicines and pursues optimal health for me. All that being said, sometimes the best medicines are not always available in all facilities.

With DM1, it is doing so well, that the drug company has opened up a new trial. I found the trial on clinicaltrials.gov, which is a web site my oncologist told me to view. The original trial was closed while I was on this last set of chemotherapy so I didn't think I would get in. However, this new trial opens things up for me. It is so new that the web site doesn't really indicate where the trial is available.

So, I spent the weekend trying to figure out the closest location for the trial. I found a co-survivor who is on the first trial and she told me this second trial might be available in Jefferson City, MO....about two-and-a-half hours from me. She found me the contact information and I called the doctors office on Tuesday. I got as much documentation from them and handed it over to my oncologist on Tuesday morning.

This is how you know you have a good doctor...when you give them information about a competing facility that has the right medicine for you and they encourage you to pursue the medicine. So, our next steps are on hold right now until I figure out if I make the cut for this trial.

My oncologist's office is forwarding all relevant health information to the Jeff City office. Once they review things, and if I make this first cut, then I will go to Jeff City next week and they will do scans, bloodwork, etc. Trials are very specific...in most instances, all work on the patient must be performed in a specific facility. So, even though I had scans three weeks ago, those won't count for the trial. It is fine. I don't really care because my family and I will do whatever we can to get me the best treatment.

People often think you have to go to MD Anderson or Sloan-Kettering to find the best medical care. This can be helpful, but is not always necessary. The purpose is to find good care in a quality physician who knows how to tap into the right resources and has time to research. I also think it is helpful that my oncologist is ONLY focused on breast cancer. Each cancer is so unique and complex. Just focusing on one cancer is still overwhelming, but this type of approach ensure that you are getting someone who focuses on your disease.

So, the plan is to pursue this trial. The medicine is chemo-powered, but is only tagged for her2neu cells. What this means is that it has the power of a chemo, but will not kill good cells in my body with the bad. There are her2 cells on the heart that can be affected, but that is the only other concern when dealing with her2neu drugs.

If, for some reason, I don't "make the cut", then we will continue with another milder chemotherapy and the two maintenance drugs I am currently on, Herceptin and Tykerb> See why this cancer-fighting business seems like a full-time job. Whew, so many drugs to consider, so many effects to consider.

Regardless, with any of the drugs in my future, my white blood cell counts should normalize, my hair will grow back and I will not be anemic anymore. With my bile stent, my digestive system is getting back to normal and I am feeling better.

I am not delusional, this year has been a difficult one. However, my story is a testament that paying attention to your health and being in charge of your medical team can make a difference. I don't really mind focusing on my cancer like it is a full-time job. I wouldn't know how to approach it with any less zeal than if I were getting paid for it.

Please take charge of your health now because it matters. You can make a remarkable difference!

Blessings,
Lolo

Thought I should clarify...

2008-09-01T11:08:00.003-05:00

Attached, is a photo taken of me at our recent "Pass It On!" photo shoot. I am not sure if I am going to use this specific photo in the campaign, or just use it on the web site and for other things. Regardless, this is what I looked like a couple of weeks ago. This is what a cancer survivor looks like. I am a little down on my weight because of the last bit of chemo, but I am starting to have more energy. It will take time, but I will get back to a normal version of me.

Sometimes, cancer interrupts. It takes over my world and demands attention, yet other times I am able to manage my disease well and keep it stable. When it is like that, our life is pretty normal. I can work out a lot and I have great energy, which helps. Working out while on meds helps because it helps my body tolerate the side effects very well. For the most part, I do handle the side effects very well. I can live a very normal life where I can be a part of the kid's days in a major way.

I will tell you that I can't always get everything done, like house cleaning. It tends to go to the wayside because the kids come first. Michael and I focus on them as much as we can. However, I do have a point. I will finally get to it!:)

I just wanted to clarify that all the cancer I am dealing with is breast cancer. It gets really confusing once cancer starts affecting other organs, but the cancer that I have had on my liver is actually breast cancer. That is the only cancer I have. I thought this would be a good thing to point out because I forget how confusing this disease can be from an outsiders perspective.

What happens is that cancer originates in one area and is named for that area. There are sub-categories of breast cancer and various types within the type...so it gets pretty confusing. However, all of it is breast cancer. What happened with me is that breast cancer originated in my left breast. Small cells broke off from that primary tumor and moved through my blood stream. Breast cancer likes to travel and "stay" on the liver, lungs, bone and brain. That doesn't mean my little cancer cells didn't go to another organ, it is just likely breast cancer would not grow on another organ like it has on my liver.

All cancers are unique and each person is unique. So, doctors try to speculate, based on clinical trials and working with colleagues, to figure out what meds will work great for what type of cancer. However, cancer has DNA just like any other cell in your body and the problem takes place when the DNA in cancer cells evolve and work around the medicines to find other ways to fuel the disease.

What does this mean? For example, my cancer is not fueled by hormones, but it is fueled by an oncogene. An oncogene is a protein that is found on cancer cells that allow it to multiply out of control. It is the gasoline for the car. My oncogene is "her2neu"...we will abbreviate this as "her2". I take a targeted drug called Herceptin that tries to squash this protein from developing new cancer cells.

For me, my cancer has a potent amount of her2..which means it is an aggressive cancer. I have known this from the beginning and have just decided that this is just information. I don't give it any more power than it needs...because having this characteristic also helps my doctor feel comfortable with us trying certain meds. These meds are focused on attacking her2. For the most part, these meds have done wonders for me....truly, they have saved my life.

But...remember that cancer has DNA and it is smart. Cancer can find a way to go around the her2 cell to fuel growth and it can use her1, her3 or her4...which are other oncogenes similar to and present with her2. I don't really understand the cell biology, I just know we need to shut her 1 through her4 down. Untiil then, I believe we will be on meds for about three to six months and then will make switches.

My own speculation is that after about three to six months my cancer cells find a way to work around the meds and find a new way to grow a little. This last string of meds really shut the cancer down in many ways, but it is still on the liver. Please know that with breast cancer, the goal is to shut down growth...not necessarily for cancer to disappear. It would be nice if it would totally go away, but it will take time for that.

I am always hopeful regardless of this aggressive disease. We are contemplating new meds right now. I will stay on two drugs that block her1 and her2. We are just trying to figure out what other medicine to get on for now. The purpose, once again, is for no new growth and I think we can do that. I know we can.

There is a new drug being studied right now that shuts down all four her proteins. I believe I will eventually be on this medicine. It is not available on the market yet, but if the study goes well...it will be available in a year or two. Also, there is another drug that has the power of chemotherapy, but is tagged for only her2neu cells. It is being studied now too.

FIve years ago...or even just before I got diagnosed with cancer, which was three-and-a-half years ago, these drugs were not even available. They were only in clinical trial. But, Herceptin became available to me immediately during treatment. I believe it is one of the tiny miracles that have taken place in my life to prolong and ensure healing.

I have always believed my story is about healing...about living with cancer. I plan on living a long life and I also believe this cancer will be deemed "stable" consistently over time. We may have some more bumps in the road along the way. But, I am young so my cell division process moves pretty quickly right now. Eventually, that will change too...which will slow growth.

Alright, enough with the confusing medical information. Let me know if you have questions.

Blessings,
Lolo

How cool are my cousins?

2008-08-30T13:29:00.006-05:00

So Monday night Barack Obama made a stop in Kansas City to watch his wife deliver a speech at the Democratic National Convention. Michael and I were watching the convention while I was mildly drugged up from the surgery. At the end of the speech, the camera went to Barack who was sitting there in the house of my older cousin, Alicia! She was there with her husband, Jim, and their three girls...Hannah, Lindsay and Grace. I consider Jim my cousin, too, even though we are not blood-related. That is how family works.

It was so cool to see them at the convention on the BIG SCREEN with a Barack Obama sitting in their home...that I have been in several times over. They are the nicest family, the whole crew is so amazing and unique. Their oldest two daughters, Hannah and Lindsay, were in Michael's and my wedding while the youngest, Grace, was in Heather's wedding. They are wonderful kids. We were so happy to have them be a part of our special days. Anyway, if you hit the title to this post, it will take you to the pictures of my cousins. There is a strong family resemblance between all of us, must be the Irish in all of us. Not sure.

Anyway, I do not pretend to take credit for all the hard work they have done for Barack Obama's campaign....or for any of the hard work they have done in life. I just try to pick up little tips from the good that they do. I am also NOT trying to push a political agenda. I will not comment on my own political views. I just think it is really neat to see good things happen to really good people who inspire ME. I am proud of them, though. I will take credit for that.:)

Blessings,
Lolo

Happy Saturday!

2008-08-30T13:14:00.002-05:00

I am starting to feel much better as my bilirubin is getting back to a more normal range. The whites of my eyes are still yellowish, but my skin has returned to the ashen grey that can be attributed to chemotherapy! Yeah!

Anyway, Jack and I are running errands today while Mo and Michael take it easy. I truly consider it a privilege to be able to have enough energy to run an errand that I would like to be involved with. That may sound silly, but cancer can strip you of your energy...or actually, my medicine has done that. So, it hasn't given me much ability to be a normal person.

I know I am not really normal anyway, I am an eccentric writer and breast cancer advocate. I am very cool with that, as long as I have enough energy to be the crazy gal I like to be. I am trying to consider these last four months on chemo as a way to purge the cancer from my body and have a new beginning. I get to start all over. I GET to start all over. I am pretty lucky, blessed.

We will start a new chemotherapy on Tuesday, but it is not like this last one. All chemos are different and all chemos work on people uniquely. Abraxane, which was my last chemo is extremely hard-hitting, but that is what we needed. Those types of chemos make you lose hair and all the other major side effects. Navelbine is the next chemo I will be taking. It is a chemotherapy in that it goes after all fast-growing cells, but it is not as ferocious as Abraxane. That is why I should be able to get a lot of my energy back.

Another reason I will get my energy back is because of the stent they put in my liver. For now, they put a small stent in, but they will go back in in about six weeks to put a larger one. Already, I can see the physical benefits of this procedure. However, because of this blockage and the build up of bile, my body has had difficulty metabolizing all the nutrients of food. Therefore, my weight has remained extremely low and there is not much I can do about it.

The procedure has opened up the bile duct from the liver and is allowing the waste product not to stay in my body...but to expunge itself from my body. Yes, this is a serious problem so you should be thankful for your liver and good to it...because it is probably the most important organ you have. My liver has been through a lot, but like me it is resilient. The liver actually has some stem cell functionality in that it can repair itself. Pretty cool.

My liver still needs help to keep my cancer stable, but I can tolerate meds pretty well. I am sure you have figured that out. I figure we will be on navelbine for a while...maybe four to six months. I am not sure if this is the type of drug where my hair will grow back, but I think it is. I am also going to resume some nutritional supplements that would be helpful to my liver. And, I am going to resume juicing vegetables at least once a day. My liver will like that.

If you are starting to get the picture that I will be on meds forever, you are correct. We have achieved the ultimate goal of stability and we want to maintain it. There are other drugs on the horizon that will probably be available to me over the next year or so, but for now...navelbine and my two targeted drugs should help me remain stable. Stable is good when it comes to stage IV breast cancer. In fact, that is all that really matters to oncologists. I could live a long life with tumors in my body...as long as they don't grow. That is what matters.

I will write more about breast cancer later. It is a unique cancer, but all cancers are unique. Not only are there categories of cancers that are named based on where they originate in the body, but there are so many subcategories that doctors evaluate in order to determine the best treatment. It is amazing. I pinch myself every day to be alive and getting better. I know I am on the mend and am confident to continue down this road.

Happy Saturday!
Lolo

The little things...

2008-08-29T08:28:00.002-05:00

I guess it truly is the little things in life that can bring us the most joy. Yesterday, I was feeling good enough to get Morgan off of the bus and have a relatively normal evening with the family. I am still not fully recovered,but am on my way. Today, I got to take Morgan to school and she was so happy that it was me doing it. She start school two monday's ago, but this was the first time I got to take her because I was feeling so bad. I am still tired and weak and all that stuff, but I am going to work on to erase the side effects of this last chemotherapy and get back to being my old high energy self.

I realize I will have to pace myself, but also I will try to continue to recognize joy in the small things. Today, I have one-on-one time with Jack and that should be fun, too. Living with cancer is not always easy, but it is doable.

I hope each of you find joy in your day! I will write more later...

Blessings,
Lolo

Another day of rest...

2008-08-27T20:30:00.002-05:00

So, although the surgery is over, my body is still adjusting. The name of the procedure they did was ERCP, not sure what any of these initials mean, but the procedure was in the Endoscopy Center at KUMED so I figure I know what the "E"stands for. I have been really sore today and yesterday because they went into my throat in order to access the bile duct. So not only did they have a breathing tube in my throat for me, but they put the tubing through my throat, into my stomach, my small intestines, etc to get access to the blocked bile duct in the liver. Then they did some testing to ensure they knew where the blockage was. After that, they began to put the stent through my body to keep the bile duct open coming from my liver.

So, what does this all mean? Essentially, the chemotherapy turned some of my cancer into scar tissue while some of it disappeared. There is still some cancer on the liver that we need to deal with and I am not sure if we will be doing more chemo or using maintenance meds to do this. The only location that I have known tumors in my body is the liver and this chemo has been working really well on all of it. The jury is still out on whether I will resume chemotherapy. I assume if my bilirubin count is still high then we will refrain from making that decision until it is back in normal range. To give you an idea of how I have felt, I probably not felt good in a week-and-a-half. Because of this blockage, every time I have eaten anything, I have been so uncomfortable. My skin turned yellowish and so did the whites of my eyes. My digestive process nearly shut down so thank God for these modern procedures that can turn things around. I am a walking experiment of science and I owe my life to modern medicines and treatments.

Since Monday, my skin is less yellow, but the whites are my eyes still have a tinge of yellow to them. I am digesting food better, thankfully! There is nothing worse than being hungry and not being able to digest food. This last weekend was the worst with me not even wanting to eat at all. However, Michael kept pushing me to eat because I had no energy. I really wanted to fast and if I had been by myself, I might have done it. But it wouldn't have done me any good. I would have had to just sleep all day.

I think the gastrointestinal surgeon wanted to put a larger stent into me so I may have to wait a week or two and do this procedure again. I am not sure what my oncologist will think of all of this. I will see him tomorrow for a maintenance treatment and he will either weigh in his final decision on chemotherapy or wait. My thinking is he will wait until I have the more permanent stent put in to make that decision. For those of you who aren't used to oncologists, they are the most cautious of doctors...often weighing in a multitude of opinions before actually making a decision.

Regardless, they deemed me stable for now and I am thankful. I know I can do more chemotherapy if they want me to...and if my doctor wants me to do it, then I will. No questions asked. However, I do wonder when I will have freedom from this disease. I do wonder when having made all the "right" decisions...all the "hard" decisions will pay off? My goal from the very beginning was to make good decisions so this disease wouldn't be chasing me down, yet I still seem to be racing with it. I wasn't supposed to get this disease and even when I did, my doctors told me I was stage I or stage II. Thank God, I am paranoid and got a second opinion because I was stage IV! And, knowing that from the beginning has made all the difference in my prognosis.

So, once again, my friends I am going to encourage you all to take charge of your health. It may seem like I am in a pickle of a situation, but I didn't do anything wrong to get here and I have been in relentless pursuit of good health for as long as I can remember. And it is because of these things that we have had good treatments, such as this chemo, in our arsenal of weapons. We have choices and they are amazing choices.

I know my life will get back to normal where my energy will resume and I can get on the bike. I just have to be patient for now and wait on my healing from this minor complication AND the verdict on my chemo. I guess each of us only have the day we are currently in so I will try not to wait to begin life when I know more. I will do what I can right now so if that means rest, then I will be the best "rester" possible.

Blessings,
Lolo

Surgery done and am recovering.

2008-08-26T10:24:00.002-05:00

Looks like they were able to go into my liver yesterday and put in a stent to my bile duct. WILD. They had to go in through my mouth so my throat is pretty sore. I am also tired, but that is to be expected. My skin is getting less yellow. The same is true for the whites of my eyes.

The doctor said this blockage caused my elevated liver enzyme counts as well as the elevated bilirubin count. Over time the bilirubin will leave my body, as it should, and I will start to feel a look more normal. Until then, I am just taking it easy. I am thankful that the issue could be resolved and was so fixable.

Blessings,
Lolo

Morgan on Chief's RED Friday for school!

2008-08-24T14:16:00.005-05:00

Did I tell you?

2008-08-23T11:22:00.003-05:00

Did I tell you that the spot of cancer on my left lung is GONE? Did I tell you that a lot of the cancer in my liver has either diminished in size or power and/or is now scar tissue? Did I tell you my doctors now consider me stable? "Stable" is a big deal when it comes to stage IV cancer. It is a golden ticket to Willie Wonka's factory as far as I am concerned?:)

Anyway, I know I haven't talked about the scans much because I am not feeling well. The reason for that is because the scar tissue in the liver is causing me problems with digestion. Though it is not a major long-term problem, it is causing me a lot of discomfort. This week was Morgan's first week of school and I wasn't very involved in it because I thought I had the stomach flu.

But, my brilliant oncologist figured out from my scans that one of my bile ducts was being blocked. Yes, I said bile. Not sure what bile is and I am a little too tired to wikipedia the word right now. In essence, they are going to go in on Monday and put a stint in so we can reroute my bile. Such an attractive thing to say on a blog, huh? But, there it is.

In the short-term, I look a little jaundiced but whose counting appearances when you weigh 100 lbs and you have no hair?:) A little yellow hue to the skin and they whites of the eyes might make me a little more attractive? I am laughing right now and I hope you are, too.

The truth is that I am all-too-human and if that once-cutie George Stephanopoulos had not already taken that book title, I might consider it for my book. I have also considered NINE LIVES because, let's face it...I have had numerous miracles along the way, which I will credit in the book. However, I must admit that all my serious book titles are under wraps because they are that good!

Anyway, Michael and I both got the sense from my oncologist that we might be getting off the chemotherapy after this outpatient surgery on Monday afternoon. However, nothing is certain until the doctor writes the orders for the medicine so don't hold me to that.

This digestive issue has been causing me a lot of discomfort for a while and it has been the biggest issue when dealing with this chemo and keeping my liver enzyme counts high. I am pretty resilient when it comes to surgery. For those of you who haven't been followers of my story from the beginning, I was able to walk two miles a day while recovering from lung surgery. I bounced back from my double mastectomy and got right back into work. I bounced back from my earlier liver surgery pretty quickly. So, basically, I am telling you this because my doctor may decide that I can do a little more chemo once this bile duct issue is resolved. Who knows? Once I know more , you will know more.

My ultimate plan is get into the gym this Fall. I plan on strength training two days a week and spinning three to four days a week. My sister and I are also planning on doing yoga every once in a while. I crave the hard workouts and I miss my bike. But, I am about 75% healed and am still on the mend. I am alive when a mom in my shoes twenty years ago would not be facing such a bright future.

I guess I said I wasn't going to write much this weekend, but I am starting to feel a little better. That helps.

Have a wonderful and bright Saturday!
Lolo

A little under the weather...

2008-08-22T10:20:00.002-05:00

Hi friends, though my scans were good this week, I have been feeling a little under the weather. As a side effect of the chemo, I have scar tissue in my liver that is slowing down my digestion process. This makes things more than a little uncomfortable. So we are going to have an outpatient surgery next week to bypass the scar tissue and make me a happy person.

Regardless, I have not been feeling well. I also have little energy so I have not been writing much. Fortunately, this issue is fixable and it will get fixed next week. So until then, if I am not posting on the blog much....don't read too much into it. I am telling you the absolute truth. If I would admit to this slow digestive process on a blog, then you can bet I am an honest person.:)

I will keep you all posted once I get the appointment scheduled and know more.

Blessings,
Lolo

Scan results are good.

2008-08-20T18:16:00.002-05:00

We got a call from my oncology nurse and it looks like my scan results are good. Not only is the cancer taking up less of the glucose solution, but they are deeming me "stable" as there has been no new growth. What does this all mean? I am not totally sure because cancer is such a complicated disease. I do know the chemotherapy we have been using is taking away some of the power of the cancer, which affects its ability to regenerate. I do know we have had shrinkage in tumors and I do know that being considered "stable' is a good thing.

Because there are so many viable medical options with breast cancer, we will meet with my oncologist tomorrow to discuss what we will do next. We may decide to stay on the medicine longer or to change to something else. Either way, this is all to be considered a big success in the fight against my disease. I can not tell you what it means to me to have the weapons to fight against a disease that surely would have taken my life without them.

That is why I still want to encourage each of you to take charge of your health...to not let your fear stifle your ability to preserve your life. Throughout this journey, I am scared many times. I truly despise that I have still have breast cancer when others don't have a speck of the disease in them. I do not wish the disease on anyone, but I also don't wish it on me. But, me facing my disease has only led to this being a story about living with and healing from cancer.

Knowing exactly what I have going in my body can drive me crazy, at times, yet it is the only way to win. I do lots of things to preserve my sanity along the way, but still, I can have melt downs. But, the melt downs don't compare to actually being a living, breathing person who can care for my kids. That is priceless, my friends.

I will keep you posted as I know more about medicines.

Blessings to each of you on this wonderful day in which my continued healing is confirmed!
Lolo

Check out the new pictures!

2008-08-18T19:03:00.001-05:00

There are new pictures all over the blog! Check it out! Lolo

Big day!

2008-08-18T08:59:00.003-05:00

Today was Morgan's first day of second grade. She did so great. Michael and I have a lovely daughter who has an internal clock that is programmed like a college student. What I mean is she barely sleeps, she usually goes to bed late and gets up late. But, last night she said she wanted to get up early and take a shower and she did it gracefully today. We had some great mother-daughter time while I combed the tangles out of her hair and she looked so pretty. I am not feeling very well so Michael took her to school and walked her in. She did a great job and was ready to go. She also asked if she could ride the bus this year instead of me picking her up in the afternoon. So, that is something new for today also. We will see if she likes the bus, but for now I am so proud that she is growing up and feeling more confident!

This afternoon I have my regular two month scans and I am feeling confident that they will show regression in the cancer. It is amazing what a full life I can live while on these meds. Now, don't get me wrong. I can't live a typically full life for me. Like today, I was going to go to the grocery store, but I am not feeling well and I have to fast four hours before my scans so that will make me tired. So, I am going to try to run to one store then rest and read before my scans. Jack will play with his cars at my mom and dads. I will take him there so I won't have to worry about his day being compromised because I am not feeling good.

It is all about balance. I want to keep the balance in my family while getting healthier every day. I think this is happening. My kids seem to be showing signs of maturity and of contentedness. I guess the scans will let us know how my health is, but I also trust in my body that it is on the mend. The response to these meds last time was astounding. I can only assume this will stay the same. We will have confirmation of this sometime over the next couple of days. I will keep you all posted.

Blessings,
Lolo

My three-day team!

2008-08-18T08:35:00.005-05:00

(Amy Galey, Heather (Walsh) Johntz and Terri Irons)
(Heather, Any and Terri)
Here is my Komen 3-day team who walked in Chicago this year. They were so amazing! Terri just sent these pictures so I wanted to let you all see my team.

Blessings,
Lolo

Chiefs!

2008-08-17T12:27:00.006-05:00

After our fun photo shoot yesterday, Michael and I got to go to the Chief's game with some friends in the evening. We have a friend who works there who was able to get us field access while the Chiefs warmed up. It was so cool. One of our friends who was with us is dating a Chief's Cheerleader and she and her friend took a picture with me (above). They were taking pictures with everyone in the group so I thought...why not me?

The old Laura might have been too intimidated by these pretty girls and would not have approached them. I would have been to shy to speak up or ask to be included in the fun. I know that sounds funny to hear a woman saying this, but we are sometimes intimidated by people of the same sex just as much as the opposite sex...maybe more. Regardless, these girls were very nice and approachable. They were happy to take a photo with me. I am glad I spoke up because it made for a FUN photo.

So, if you ever have a friend or family member wonder what it is like to live with Stage IV cancer, just send them to my blog so they can check out my photo with the super athletic cheerleaders. They will see that fighting cancer is doable. Life is good.

Blessings,
Lolo

Why Pink?

2008-08-16T14:08:00.006-05:00

(Picture of me, writing on the blog.)
Today, my survivor friend Tina and I took our families to Unity Temple to get our photos taken with an organization called Why Pink? Initially, I saw this organization on facebook and I must admit I loved the name. For a long time, I have wondered the same thing...Why Pink? Why pink for breast cancer instead of some other color? I do love that there is one color that is linked to my disease because it helps people know about it and remember it. But, I have to laugh because pink is one of my worst colors, especially when on chemotherapy. When on these heavy drugs, most people look ashen and tired. They either lose weight or gain weight. Either way, they don't really look full in color to absorb the radience of a pink item of clothing or a pink hat.

I was diagnosed at the beginning of 2005 and it has taken me this long to start to embrace my inner and outer pink! I have decided that I will take on the color as a badge of courage and I will claim it. It is not as if I can hide from being a breast cancer survivor anymore. For a long time after my first diagnosis, I didn't want to wear any pink. I wanted to blend into the background again, be a normal person. When I bought my road bike, I had the option between a white bike and a pink bike. I chose the white bike because I liked her better. Her model name is the Contessa so I do call my bike "her". The pink bike was a great bike, but I didn't even consider it. I didn't always want to be associated with pink because of my disease.

Granted the pink bike cost a bit more than the road bike I purchased so that helped my decision, too. But, I felt most at home with the modest, light weight white and silver bike that I have come to know and love. Ironically, I would always avoid the pink cycling gear too. Baby blue was my color. I would buy blue any day, but I didn't want my cycling team to think I was all about the Pink. I don't always want people to think about my disease every time they see me. Some people have a hard time accepting me living with cancer, and I understand. It is not that they want me to die, it is just that it is hard to accept that your friend has a disease.

However, things have changed over the past year. Not only has my cancer interrupted my life with chemotherapy, but I am sharing this experience with all of YOU!:) I can't hide anymore. The truth is that I always thought pink was for the girly-girls. You know, the really pretty ones who always know how to wear the right outfit and the right make up and the right everything. Pink was not for a tomboy like me, even though I do love fashion and a little bit of glitz.

Yet, I think if you have to embrace the bad about this disease, then you should get to embrace the good of breast cancer. So, I have decided pink is one of the good things. I have decided to embrace the color even though I am pale. I am finding ways to group it with other colors to make it easier for me to wear. I have also decided that I will help others embrace their inner pink by feeling beautiful on the inside regardless of how they feel about the outside.

That is why I am so impressed with the Why Pink campaign. I put a link to their web site to the right. Trevor and Amy Goodwin are photographers who want to lend their talent and expertise to helping women celebrate their breast cancer experience. They are not survivors, themselves, but they just feel connected to this cause and want to make a difference. Pretty selfless of them and touching for a survivor like me. The photo experience can be for survivors, family members, friends, etc. Anyone who wants to celebrate breast cancer can do so through these lovely photos. The main photos you purchase will be black and white, with pink being the only color that shows up in the photo. Very clever and beautiful.

They asked me if I wanted to come do a photo shoot and I felt honored. At times, I can still crawl back into that shy little sister mode, the awkward tomboy. I can wonder why me? Or in my head I begin to wonder if I am worthy of the opportunity, but I am trying to diminish that shy girl voice in my head because it gets in the way of the good I can do. The photo shoot is about finding strength and power through your survivorship experience. So, I brought along my friend Tina who is also a young survivor. She empowers me, we help each other. She is into fashion like me and she and I laugh a lot together. I thought this would make for some great photos.

I must admit, I felt silly at times having my picture taken. That is just because I feel vulnerable and flawed as a person going through treatment. But, I put my favorite wig on and got my favorite fashion items...some were pink,some black, some earth tones. Tina brought items from her closet as well. We are both red-heads who have both been empowered by our breast cancer experience. We did take a few pictures without the wigs on, which was fun. I did have a do-rag on and Tina has a pixie cut. Very cute.

Tina is opening a wig shop to help women feel beautiful while going through this experience. Tina actually loves wigs so much now that she cuts her own hair short and wears wigs all of the time. She is beautiful. I have Pass It On to work with advocacy, but I am also interested in designing some products to help people accept breast cancer...to embrace their inner beauty. I don't want anyone to be ashamed because they have breast cancer, I just want to help them work through the emotions so they can fight, fight, fight!

I thought Trevor and Amy did such a great job today. They made us feel comfortable, they let us be ourselves. I even got to wear my cycling gloves in a couple of pictures. These are my news ones I bought for the photo shoot and they are pink! It looks like I am growing up. These will be the same gloves I wear to my scans, which will be this Monday. Yikes! The gloves help me feel tough, vibrant and healthy. I am glad I have pink ones now. I got some good photos of Michael and the kids as well.

Right now, Trevor and Amy are processing the photos and they will eventually have our pictures on their web site under the survivor stories. I am also hoping to use some of their pictures for the Pass It On campaign. Michael and the kids were in a couple of them with me with their Pass It On shirts on.

I have come a long way...from being a newly diagnosed girl who couldn't stand pink to embracing the new me, which includes this radiant color of pink. I am not sure why pink was chosen or who chose it, but I am glad they did. You should check out Trevor and Amy's website at www.whypink.org. There will be more pictures over time as they are currently working on the campaign. I am sure their photos will be thought-provoking and the women who invest in this process will feel beautiful! Tina and I did.:)

Blessings,
Lolo

The kids and me, being our goofy selves!

2008-08-16T14:05:00.004-05:00

We just got back from a photo shoot that I am going to write about (above), but thought I would put this photo in first before I begin to blog. Mo and Jack and I are a wild crew...not sure how Michael puts up with us, but he does! Thank God!:)

Lolo

Hiya, again!

2008-08-13T21:43:00.005-05:00

My nephew, Thatcher, and my daughter, Morgan are getting their new belts at Taekwondo in the first photo! Jack is back-to-back to Morgan in the second photo with Thatcher off to the right. They were so happy to be getting their new belts. Thatcher was getting a new version of his orange belt, which included an orange headband with chinese writing on it. Morgan and Jack were getting orange belts, which is one step up from a white belt.

I must admit that it is so sweet to see Thatcher's enthusiasm at TKD...or Morgan's focus...or Jack's squirelly nature being honed into a more focused four-year-old. TaeKwonDo has been great for them. It has instilled confidence and given them a voice. Jack still struggles with speaking directly to his teacher. He wants to shy away, but he is trying...which is wonderful.

The sport teaches discipline and respect for your peers. What a wonderful opportunity to teach your kids life lessons. Michael and I really appreciate seeing our kids working on this discipline. It is basic and difficult and very sweet.

Blessings,
Lolo

Everyone Deserves a LIFETIME!

2008-08-12T13:21:00.004-05:00

My big sis just got back from the 3 day walk in Chicago. She got me this shirt. She said their slogan was "Everyone Deserves a Lifetime". I just figured out yesterday that this "everyone" even means ME! :) It just hit me. I need to do a better job of accepting that I am a breast cancer survivor. Even though I deal with my disease well, I have trouble "realizing" that breast cancer is my disease...that I belong among the sisterhood of survivors. Part of my problem is I never liked PINK. But, I can embrace hot pink and I am even working on breast cancer pink. I will get there.

I have decided that I need to do more with survivors and when I am feeling better next year...my sis and I are already brewing plans for a 3 day walk in which I will be able to participate and feel the positive energy. But, for this year, my sister told me all about it. Her team even got a pink shirt for me and had it signed by people on the walk on the last day so I would feel like I was there. One of our teammates' sisters gave me a goodie bag with a beautiful survivor bracelet, which I am wearing right now. I am also going to do the local Race for the CURE. I know that chemotherapy got in the way this year and I accept it, but I hope and pray and envision that next year won't be chemo year...that there will be no need anymore for it.

I am all decked out in 3 day gear today with my skull and crossbones do-rag. We are heading to my mom and dad's and then I am going to Wal-mart. I may scare a few people, but I am a petite person so my do-rag shouldn't be too scary. I just want to be empowered by my sisterhood of survivors...so I will be bold today, just like the Komen 3-day walk says.

Blessings,
Lolo

P.S. My face above is a smirk because I think I look ridiculous in these blog pix, but I want to show you all a picture of me at least once a week so you know I am still survivin' and thrivin'.

TMI

2008-08-11T22:21:00.003-05:00

So, three letter acronyms are kind of "The Thing" right now. Because of text messaging and instant messaging, these little acronyms have come about. Of course, I love text messaging and it is because I am not a phone talker. I don't like chatting on the phone a lot because it takes away from the life I am living right here. Plus, since I am a blogger now, I tend to share my random thoughts with all of you and I try to stay off the phone.

Text messaging fits in handy, especially with my friends. I understand what TMI means...only because someone cooler than me told me. For those of you who don't know, it means "Too Much Information". I am not cool, but I do know this three letter acronym. It is the subject of the blog tonight because I wanted you all to know that although i am a fully "aware" member of my medical team, I decided a long time ago to not get bogged down in the detail. What I mean, is that I choose to be the have an executive's mindset when it comes to my health.

I used to work for many executives in the business world and I know what this means. When I worked at an accounting firm, we would keep all our bullet points on any presentations to a maximum of three points. (OR at least this is how I remember it.) We would try to keep the positive points high, with the suggestions very limited and focused. The executive's had busy schedules. They were leading their teams and we were giving them the detailed information to make them better. We gave the detail to those who worked for the executives and we gave the executives the high-level overview.

Now, I don't want to equate myself to an executive in terms of accomplishments. That is not what this post is about. As far as I am concerned, titles don't matter when it comes to me. I learned a long time ago that "Stages" and "Titles" are just labels. I give people time to show themselves. I figure out through their actions that I can or can not trust them.

What I did learn from my business experience was that executives tend to be pretty wise people. Most execiutives have paid their dues and they spend a lot of hours keeping their fingers on the pulse of the business. But, they make it look easy. They make it look easier than what we realize. I also learned that the executive's mindset of keeping their hands in the business, but letting others give them high-level reports was probably a good way to do things.

I have applied this mindset to my medical team because I know I can trust them. I believe in them and they believe in me. I learned a long time ago that I can trust my oncologist. He is best and the brightest, as far as I am concerned. He has saved my life multiple times over. Because he passed all of my various tests, I do trust him. I trust his decisions and I trust his information that he gives me when it comes to the scans.

Please don't get me wrong, I do my own research. However, he always accepts any ideas I give him and he follows through. You all should know that I am a neurotic patient. I constantly scan my blood counts and ask questions. I am always looking into research. Though I am heave on the praise, I fully believe I could be annoying with another physician. But, my doctor always accepts my questions and he answers them.

One of the best things I have learned as an adult is that it is far better for someone to say they don't know the answer and do research on the subject, than to feign knowledge about a subject matter when they are not 100% sure. My doctor has made numerous phone calls on my behalf, spent countless hours with colleagues at other facilities or at KU Med Center on my behalf and truly cares about me.

Because of his proven integrity, I trust him to carry the weight of the details when it comes to my health. What I mean is that I let him have the detail while I try to have an executive's mindset. Anything more than three points with me can cloud my brain and make me lose information. Though I am ferocious with research, I know that I am only human. I can only carry SO much detail about my body.

My oncologist, who is amazing, carries that detail for me. I do not think this is an ignorant way to live...in fact, I think it helps my fight. I know I have cancer on my liver that is breast cancer. I know I have one spot on my left lung. Is there anything else a human needs to know? That is definitely overwhelming information for me if I sit down and think about it so I will tell you what I do.

I try not to think about it. I try not to let the "TMI" get in my way. I know I have an arduous battle with cancer, but I didn't invite this disease in my life and I had NO known risks for breast cancer. I am the most unlikely candidate for this disease. I ascribed to clean living, as best I could. But, I still got this disease.

I want all of you to know this so that you don't get bogged down in the detail of your daily life. Sometimes the detail is just detail. It doesn't help us do any better in our fight, it just drags us down. Now don't get me wrong. I went to more than one oncologist and I made all my physicians prove themselves to me. I am kinda a tough cookie when it comes to that stuff. However, once a doctor proves themselves...and proves their integrity over and over, I let their actions speak to me and I begin to trust.

So, if you ask me details about my cancer I don't answer, let me just let you know that it doesn't matter how many tumors I have on my liver. The fact that I have one is all I need to know. The fact that my liver function is IDEAL, even with all this chemo is amazing. The fact that my detailed liver counts are coming around and looking normal is amazing. I am battling a ferocious disease, but I am empowered by my team every day and I am empowered by the people who love me and believe in me. That is ALL OF YOU!:)

Sometimes the detail is just information...that is all it is. Don't let the TMi get you down. I try not to and I am healing because of it (and many other healthy reasons:).

Blessings!
Lolo

Booie!

2008-08-11T11:56:00.005-05:00

Jack loves "Woody" from Toy Story, but he calls him "Booie" (pronounced like BOO-EEE). Michael and I don't really know how to spell his variation of the name, but we did our best. So here is my blue-eyed Booie! He wore this costume just the other day so Michael took a quick snapshot. I am going to take Morgan and Jack to Wonderscope today because they are stir crazy. I am already feeling WAY better than I did over the weekend. Each day is a new day with chemotherapy so I just accept how I feel and keep moving. I am very glad I get to still be pretty active with the kids, such a blessing. Wonderscope is a kid's museum here in KC, very interactive. It will keep them from beating eachother up today or beating me up! I will write more tonight! I have a lot to say, as always!

Blessings,
Lolo

My team finished the 3 day walk!

2008-08-10T21:06:00.003-05:00

My sister and our team finished the three day walk today in Chicago. Heather called to tell me how cool it was to finish. They were all such a team. All the women walked into Soldier Field together, after the last woman finished. Such a sisterhood. Very cool!

Heather and I talked about how I would like to do it in the future, but it was the right decision not to go this year. My chemotherapy wiped me out this morning. I slept late, very late. I was able to get up and take the kids out for some fun and then head to evening church. I just have to take it easy on chemotherapy weekends, but believe me...I am waiting, patiently for this chemo to be over so that I can get back to being athletic. I will always be on medicines, though, and I am okay with that.

For now, I will have to live through my big sis and all of you who were able to do the Komen-KC Race for the CURE today. Over 22,000 women were in that walk. Such a wonderful turnout. My plan is to be in the 3 day sometime over the next couple of years and to do the KC Race for the CURE from here on out. I also have other plans for athletic events in the upcoming year. Most of them are for my disease of breast cancer, but others are for other people's diseases because those matter too. We all matter.

So many women have come before me to pave the way so that my disease could be tolerable, treatable. Because of this, I try never to complain, but always to accept the road I am on. I know it will get easier in the future.

I am going to go back and watch the Olympics with Michael and the family!

Blessings,
Lolo

40 miles down, 20 to go!

2008-08-09T20:45:00.002-05:00

My sister and our Pass it on 3-day team have completed the first two days of the walk and are probably resting for the last day of the race, which will be approximately 20 miles. They are so impressive. Heather said the second day was better than the first, but the weather in Chicago is cooperating for them so that is nice. They three wonderful girls who are generous at keeping me posted and telling me about the event.

It is best that I didn't go to the walk because today I was super tired, slept most of the afternoon. Saturdays and Sundays are usually pretty hard on me after chemotherapy. This morning, Morgan and I got up at 6:30 to cheer on our girlfriend in her first triathlon. It was all women, so inspiring. Our friend completed her first triathlon with a smile on her face.

I saw all those girls on their bikes and I started to salivate for my bike. I just wanted to get my bike and go. But, this year is about healing and I have learned the hard way that if I don't let myself fully heal, I may have to sit things out next year and I don't want to do that.

I have big plans for when I get off this chemotherapy in the Fall. I want to train for a triathlon, starting with taking swim classes in the winter. I will spin all winter, too. Spin, means cycling inside. But, for now I must accept my plight...I must rest.

I have to get off the computer so Jack can play webkinz.

More later...
lolo

Two sisters.

2008-08-07T09:10:00.006-05:00

Today, my sister left for the Komen 3 day walk for the CURE. Heather is my big sister, just a year older than me. When we signed up for the walk, it was going to be both of us. We were going to walk with two other girls from our hometown who were forming a team. The Susan G. Komen for the CURE organization is so amazing. They raise so much money and attention for breast cancer. I can not fully articulate the value of an organization like this to a girl like me.

Not only is this organization built on a promise between two sisters, but it was built around the life of a young survivor who didn't have the medicines that I have today to fight. She was young, just 33 when diagnosed. She died three years after her diagnosis. She was lively and vibrant and interesting. If you ever have time, you should go to www.komen.org. Click on the picture of the two sisters on the left and read Susan and Nancy's story. It is powerful and personal.

I must admit I go there every once in a while to be reminded of the difference they have made in my life. I was 32 when diagnosed, I am 36 now. I have been in a battle, but I have so many more treatment methods in my arsenal to fight than anyone did 25 years ago. There is also a multitude of knowledge out there now regarding my specific type of breast cancer. When I read the story about Susan and Nancy, I am also reminded that I have an amazing sister. We Walsh girls are not huge complainers. We like to tough it out like a "boy" would. We don't want to complain or create a bump in the road. Because of this, I have difficulty asking for help. I am getting better at accepting it, but it is still hard for me to ask.

My sister, Heather, always just pitches in. She knows I have difficulty asking for help...especially when it comes to the kids. I don't want their lives to be interrupted by my disease. I want them to know about it and accept it. We talk about it when they ask questions, but I don't want them to fear it. I always want them to see me from a vantage point of empowerment, not weakness. My sis will just call out of the blue and recommend suggestions to help with the kids. When I have had to do surgeries, her husband and her will always offer to watch Morgan and Jack. They will always be delicate and respectful to Michael and me. They will also make it seamless to the kids so that it does not disrupt their lives.

My sister has graciously taken a back-seat to my cancer. It is funny. I spent my whole life tagging on her coat tails, idolizing her. And when I go through something difficult, she is still my hero. She easily takes the burden off of me so that I can fight. For those of you who have never experienced something like a chronic illness, it is an exhausting battle...not only mentally, but physically. It is also not only the patient's battle, but it is the family's battle. The family is whoever fits into your personal posse, this could be friends or family or people you feel comfortable with letting in. So, it is not just my battle, but my sister's as well.

Even though I am not going to be able to walk in the 3-day in Chicago this weekend because of my chemotherapy limitations, my sister and the rest of our team will be there. They are walking for women who have battled this disease, they are walking for me. Sometimes I forget that I have breast cancer. That must seem funny to some of you. It just seems like a bad dream that I will be able to wake up from someday. I spent 32 years of my life healthy and four unhealthy so that is why I forget sometimes. The shock of the diagnosis still has a reverberating effect on me.

But, it is true. I do live with cancer and I will survive it. Like putting on a pair of shoes, I put on my SURVIVOR label every day. It is part of who I am. I will get "healthy" again, but I will always be considered a survivor from here on out. I am getting acclimated to it and am definitely proud of being associated with so many amazing women.

I wish I could be at the walk this weekend, but I am proud that our little team of four tenacious women raised over $12,000 for my disease. To be honest, I am not sure if I would have registered for the walk or raised the money because the goal seemed daunting. I didn't want to ask people for money or ask for help. I also wanted to spend all summer riding my bike. However, I have learned a lot by being a part of this 3-day process. I thought it would be a good experience for me to give back to an organization that has given so much to a small-town girl like me. It was my sister's idea and it was a great idea!

Heather is still doing the walk, of course. She trained all summer and she will trudge her way to 60 miles in Chicago in support of me. I will call her during the evening to see how she is doing and we will celebrate her efforts when she gets home. Funny how it seems that she is still the athlete and I am still her fan from the sidelines. I am totally okay with that, fully accepting of it. I am proud of her doing this walk and I will imagine her walking to a victory, just as I am doing with my treatment. The journey will be long for both of us, but a powerful one for two sisters.

Blessings,
Lolo

Peace!

2008-08-06T22:02:00.007-05:00

Some might think it hasn't been a banner year for me. Sometimes I must admit, I have that feeling...that my year has been wasted because chemo has sidelined me from cycling and from feeling like myself. I had so many plans for this Fall. I was going to do the Komen three day walk this weekend in Chicago, and the MS150 for multiple sclerosis and a 220 mile bike ride for young breast cancer survivors such as myself.

But, it is as people say...life is what happens while you are planning. It just seems that the "why" is not always a question for me to ask. I don't know why I got this disease, but I also know that so much goodness has come to me as a result of being a breast cancer survivor and accepting this role in the world. So, I am learning to accept it. I am finding my way in life and I can assure you through every negative I have experienced from this disease there have been a multitude of positives that have arisen.

Most recently, I have had so many kind people come out of the woodwork in my support. Tonight, I got to go to dinner with an old friend from highschool. She is so creative and fun and amazing. I always thought she was so wonderful and artistic...and she is supporting my Pass It On efforts. She even bought me this hat (above) to bring a little bling into my world, which it does. It is lovely and so is she,a person I have always wanted to be more like because she is so openly loving. I am excited to be reconnected with her and it has mainly happened because of my disease...because I slowed down enough in life to join facebook and she found me. We might have found our way back to each other eventually, but that doesn't matter to me. We are connected now and we got to make TODAY fun for each other.

Cancer has made me a better human, someone who is more accessible to people and able to see my flaws. I don't always like to laugh about my flaws, but I can accept them better now. It has made me take time out of the day to join communities so that I can connect with people, which has led my way back to my friend from high school. I had never had that type of behavior in my plans before. I never relaxed and enjoyed the day, I was always planning for tomorrow.

Now, I know the value of a peaceful day. I know the value of a good book and I know the value of a good friend. I am fortunate. I am also wiped out from chatting so much with someone who is high-energy like me, so I will head to bed. I will write more tomorrow, though. I have some fun things I have put on my list for upcoming posts. Thanks for reading.

Blessings,
Lolo

How much longer?

2008-08-04T21:54:00.004-05:00

This is a question I get asked often by friends, family, acquaintances. How much longer will I have to be doing this medicine? How much longer will I be on the chemo? I find it so interesting that as a society we are always concerned with next steps. We want to have a plan and we want that plan to move forward.

I remember this being true, even from the very beginning of my diagnosis. People would ask me how long I would be on chemotherapy when they found out I was doing treatment. I think, more than anything else, it is just a question to ask. People want to be thoughtful and act interested, but cancer is such a complicated disease that it is hard to relate to the situation if you are not on the inside.

However, let me assure you that once you make it to the inside, you are overwhelmed with information. It is disorienting at first. It is like finding out you failed an exam you didn't know you took. Not only do you find out you failed, but that you failed most parts of the exam so you flunked in a major way.

What can be done to repair such a failure? I think the only thing that can and should happen is to spend some time thoughtfully purging the disease from the body and then rebuilding the immune system. Sometimes the damage can be extensive, sometimes not. For me, I think my fast metabolism got in the way when my cancer cells were traveling.

Remember that each cancer likes certain organs. Breast cancer likes lungs, liver, bones and brain. It doesn't mean that it doesn't travel to other organs, it may not park itself there and begin to grow a secondary tumor. I feel blessed to have known our game plan from the beginning, to know my disease was limited but that it was on the liver.

In general, my short term plan will be to do these meds until we do the next set of scans at the end of August. I am assuming that we will continue to see regression in the cancer and will probably continue on the meds until the next round of scans. KUMED is getting a trial that I want to get on in the Fall so that is on my agenda to push for...once we get my cancer on the liver to an acceptable regression. This acceptable regression is not only for my oncologist to decide, but I am a part of this decison, too. I don't get buried in the details of the cancer. I let him deal with that so my mind can stay strong.

The trial could provide a supercharged medicine to do the dirty work for me while my body won't feel the effects of a chemo. Don't get me wrong, I would do this chemo as long as it works, but they usually have patients do them for about four to six months and then switch things up.

The DNA of cancer is also pretty sophisticated, meaning it can learn to fuel itself with other means. Right now, the her1 and her2 proteins are shut off to the cancer by Tykerb and Herceptin. However, her 3 and her 4 could still be available. So, if we start to see growth, my cancer may have formed a resistance to the drug already by using these routes. It takes a while for that too happen, but it could happen.

So, what do we do then? Well, there is another miracle drug called pertuzumab that blocks of her 1,2,3 and 4. It is still in clinical trial, but I believe at some point, I will be on this drug...with other maintenance meds. I also believe this is the drug that will stabilize my cancer for good.

Why is that? Because my cancer is fueled by the her proteins, her 2 being the most dominant. If doctors figure out a way to shut that down as a path for good, then the cancer cells could become necrotic (aka dead). I think that is already happening in my body right now with the meds we are on and I just want to keep pushing forward with that plan. I have a strong will to live with a lot on my agenda. I am okay with living with cancer, but I don't want it to sideline me anymore.

So, you see, I am a walking science experiment. I have always been of the mindset that it took about five years to build this cancer in me so it will take about five years to stabilize it. My five year anniversary will be Jan 3, 2010. I plan on being here and celebrating in a HUGE way. Life is a celebration, that is one of the things I have learned from cancer. There have been so many nuggets of wisdom that I have learned.

As far as the answer for how much longer, I can't tell you when I will get off of this chemo...probably some time in the Fall. But, I will just transition to another medicine, probably the clinical trial for a year...then onto super maintenance meds. My life is filled with a lot of super things going on. Healing from a disease such as this is amazing. It humbles me every day. I try to describe the experience I feel in this blog, but I don't think I am capturing the beauty of what it really means to experience restoration. I think I will get better at at is I continue to feel my health is more restored. But I wish each of you wonderful health!

Blessings,
Lolo

Sometimes, I wonder...

2008-08-03T15:55:00.003-05:00

if my hair will ever grow back? The funny thing about chemo-induced alopecia is you do get to a point where you are so used to having no hair...that it is no big deal. I can become lazy. All summer I have worn hats because they are easier and I don't have to mess with hair so I don't. I have also worn do rags although I have even gotten a little sloppy with tying them perfectly. Sometimes, I will look at myself in the mirror and laugh because my do rag is practically off of my head.

I am not bold enough to go without anything on my scalp unless I am home and it is just the four of us. I will also be that way around my parents or my sister, but the truth is the world is not ready for a bald woman. Sometimes I think the world is not ready for a woman in a hat.

We went to church today and I wore a hat with my outfit. It was cute, but the funny thing is that you can tell I don't have hair. Even though I had a scarf over my head, in between my scalp and the hat..you can still tell that I don't have hair. I think this is because my eyelashes and brows are starting to erode and I am taking on the look of a cancer patient. But, also, my head fits in a hat differently when I don't have hair to fill it out.

Though I like all my hats, I must admit that it can be unnerving when people stare at me or give me a double take when I wear one of them. I never really know why they are looking at me. It brings out paranoia in me, which I don't think is a good personal trait. But, if I am being honest, it does make me feel that way initially. Then I wonder if they are trying to figure me out...what is making me look different? It is hard to figure it out, at first, but the absence of hair can be a subtle thing. ...especially when someone is hiding behind a hat.

Sometimes, I want to rip my hat off and show them my bald head. Other times, I just feel like ignoring it. Then there are other times that I just laugh at myself because it is so self-centered to be THAT paranoid to think people are worried about what is going on with me. I have always been of the mindset that we are all just worried about ourselves more than each other. We are all just working through our own neurotic behavior to try to fit in this world. We are all doing the same thing, taught from elementary school to look like everyone else. And, when we think people are talking about us or staring at us...most likely, they are not.

However, the most important thing is that I know I am learning a lot from this life lesson. I also realize it is a lesson that I may have needed to learn. I would never force this on anyone and would wish that none of you ever have to endure chemo or its side effects. But, somehow I think I am a better person because I have had to go through this hair loss three times. It has made me more open and compassionate. If I see someone rockin' the bald look, I glance at them boldly and smile, but never stare. I also try really hard to make everyone feel comfortable with themselves regardless of what they look like. I tried to do that before, but I realize now I spent my whole life looking the norm and fitting in pretty well. Now, I can understand what it FEELS like to be different and I getting more okay with it every day.

I hope I continue to learn from my hair loss and become a more empathetic soul. I want to evolve, want to be better and truly see people for what they are on the inside all of the time. I hope I not only see when someone feels awkward in my social setting, but I hope I work to make them feel comfortable and connected to this world. I hope I get better at recognizing who I am on the inside so that I can stick up for others all of the time, so that I can be loving and so I can stop worrying what I look like to the world...and instead worry about how I can help the world. How I look does not matter as long as my health is good and I am evolving. That is what I will keep in mind the next time "I think" someone is staring at me. :)

Blessings to each of you...with our without hair!
Lolo

I am a little tired today.

2008-08-02T13:53:00.002-05:00

On post-chemo days, usually the first three days, I am tired off and on. Today is no different. I usually have groggy mornings with the afternoons. This morning was kind of a doozy, probably because I took the kids swimming yesterday when I should have been napping. But, the truth is that I just love being a mom and I want to do all the mom things I can. It is my first and most important job.

We did have fun at the pool, but I am still a little out of it today. Sometimes the anti-nausea meds do this to me too. It seems that most of them have a sedating effect on me. This can vary with each person, but they do seem to have this type of effect on me so that is why I try to schedule chemo near a weekend so Michael can be the primary person taking care of the kids or I can go to my mom and dads.

Mo was so sweet today. I don't know if this is sad or not, but I think it is truly special that she has adapted to this being in our life. She told me she wanted all of us to go swimming today, but that I did not have to get in the pool because I was tired from the medicine. She also said I had lots of things to do like write books, go on the computer, etc. We were just lounging around together watching a silly tv show and I just reminded her that my number one job is being a mom and it is my favorite job. She really seems to get it.

She is not afraid of cancer anymore like she used to be. She just gets that it is a part of our life. I am honestly in awe of what these medicines are able to do to this disease. I am excited for the day that I won't have to be on these particular medicines, mainly so my quality of life will return. In the meantime, though, I am constantly reminded by people around me that I can handle this. And, I truly believe I have never and will never be given anything I can't handle.

I speculate that we are probably looking at another year or so of hard fights against this disease, but I think the tables have turned and we have the cancer on the run. Before, when I would get scans, I was waiting for the bad news because I knew our meds weren't the right meds. Now, I know they are working. My little body is so sensitive, I actually feel them working in my liver. My liver will feel inflamed, at times, and will ache a little. This never happened before because my cancer cells, like most, are sneaky. They try to hide as they develop and simulate regular cells. This is until they get too big to ignore.

But, now when I feel the meds working, I know that is what it is. That it is striking out the cancer cells inside my liver. By the way, the miracle of the human body keeps my liver counts in check for the most part. It is amazing. My bilirubin count can vary, but it is always in the normal range. My detailed liver counts are coming down, which is a sign that the cancer is dissipating. We believe its power is diminishing and that the cells will either erode or turn into necrotic scar tissue. WOW. Amazing.

I am not sure how long I will be on these meds. I speculate for another two to three months. There is a clinical trial we are looking into that seems to be working on girls with similar cancer cells as mine. Remember, regardless of what my cancer does...I will always be on meds. The goal is to get me to a point that my cancer growth can be regulated via maintenance meds that increase quality of life. These drugs are being tested right now. I think I may even know which ones will work, but I will save that information until I get on them.

Don't get me wrong. Sometimes, I wish I could wake up from this cancer nightmare and go back to being the "Healthy" Laura. But, then I remember that girl has been altered in such a positive way from this experience. She is no longer there, a better version of her exists. I also then remember that this is not-so-much of a nightmare. The nightmare is when people don't have meds or procedures that can help them....when the screenings aren't there to allow for early detection. I know many of you have lived through family experiences like that and I grieve for you. I know I can't always relate to everyone's loss, but I try to be empathetic. I must always have a grateful and giving heart because I am alive and will be here for a long time. And, I have the benefit of going through a trauma and continuing to survive and thrive so I can share my perspective with all of you.

Please have a wonderful Saturday.

Blessings,
Lolo

Heading to the pool.

2008-08-01T15:08:00.003-05:00

I can't believe how good I feel today. I am a little tired, but the kids and I have been running errands and now we are going to go to the pool. So, I can't get out and exercise as much as I would like, but I still get to be a mom. Even on hard-hitting chemo, I can take my kids to the pool. What a luxury.

Have a wonderful day!
Lolo

Chemo day!

2008-07-31T07:31:00.002-05:00

Alright, friends. Today is chemo day so I will be a little out of it today and tomorrow. However, you know I am prolific and will be back on the blog as soon as my body will let me. In the meantime, I thought you all needed to see a cute picture of Jack. I will try to plant one of Morgan on here tomorrow. They are truly fun kids...a little high-strung with some high expectations. I have no doubt that both of them will be running companies sometime in their adulthood. But, if we have our say, they will be doing it with humility and kindness. :)

I need to take some more pictures of a chemo session. If I remember, I will try to do that today so you can see what it is all about. I know I try to convey how it is, but I will just say again that the actual chemo sessions are pretty doable.

Please have an exceptional day!

Lolo

Questions?

2008-07-29T22:14:00.002-05:00

Hi all! I added a post update (below), but wanted to make sure and let you all know that I LOVE questions and comments. I don't want to get too repetitive with my cancer 101 stuff or my nutrition 101 stuff so just let me know if you have specific questions. You can click on the COMMENTS button below to make a comment or question or email at loloplunkett@gmail.com. (The email address is listed at the upper right section of the blog as well).

Oh, and I don't have to "know" you in order for you to email or ask a question. It helps if you sign off with a name so I will have a frame of reference, but this blog is for anyone who wants to know about living with cancer and how it is done.

Have a wonderful night!
Lolo

Another anniversary!

2008-07-29T21:22:00.002-05:00

Tomorrow is another anniversary. Michael and I will have been married for nine years. We have known each other for much longer and we dated for about three years before we married. Michael, when I met him, was known as one of the smartest guys in our business school. I found him intimidating, in a good way, and interesting. He made me laugh and he still does. Regardless of all the cancer crud, he can still make me laugh and he can still make me believe in myself.

I visited with one of my good cancer survivor friends today and we were talking about scans and how those affect us. Some survivors call scan time "inscanity". I would use that term a lot more if I had made it up. I wish I had because it describes how scans make me feel, a little crazy. Most survivors have scans every six months and then move to every year after they had make the two-year anniversary without a recurrence. This two year mark is a coveted anniversary because most recurrences happen within the first two years.

With me, because I have been stage IV from the beginning, I have scans every two months. As I improve, those will increase potentially to four months or six months, but it will take a while for me to get there. My good friend asked me how I get through so many sets of scans going on every two months and I told her that Michael is my biggest good luck charm. He gets all the results from the doctors and calls me...good or bad, he will take those results and call everyone in the family.

The truth is that we don't have a perfect marriage and we work on things all of the time. No one's marriage is perfect, but there is amazing room for love within the dance of marriage. We try to make eachother better and to understand each other as best we can. Sometimes we are right on track, sometimes not. But, I do know one thing...that I really got a great partner who knows how to deal with me and my disease. He knows how to accept the blows and celebrate the wins. I can't imagine anyone accepting me so well with all my scars, flaws and known tumors. He is okay with me and I am content with him. He really has the concept of being a teamplayer down...whether he learned that from his family or from being on an actual team, I do not know. But, having a good man believe in my ability to heal means the world to me.

He is a lot of other things, such as a strong leader and an amazing dad, but that is not what this post is about. This post is how he takes care of me and the truth is he does it much better than I take care of him. This nine years has flown. Even with the hardships of cancer, we still have an ability to see eachother for who we are in that moment and accept whatever that is. Of course, I read books about having a good marriage and keep trying to figure out how to get better...mostly myself. I just try to see my flaws before I see his and I think that helps me stay kind. I think kindness can only come from a loving heart and I always want to be loving toward others, especially such an accepting partner and friend.

I hope each of you feel truly accepted by someone in this world. My mom always told me that if I have even one or two good friends in this world, I should count myself lucky. I definitely do.

Blessings,
Lolo

Yesterday was a great day.

2008-07-29T07:25:00.004-05:00

On most days, I am sure I could spend the whole day at the computer either researching or writing. It is becoming my comfort zone. Of course, I love riding my bike and am trying to get back on the bike more, but I have found that life is about balance. Writing and cycling both keep me in balance. So do my relationships.

Yesterday, my sister and I took the kids on a tour of a police station. We have a good friend who is my nephew's personal hero and who is a policeman. He gave us a tour of a police station where he works. It was so cute to see Morgan (7), Thatcher (5), Jack (4) and Landrum (nearly 3) walk around the station. Mo, Jack and Thatch were ready. Landrum was a little hesitant about seeing a jail, though, in his playtime he even locks my mom up in jail. Too cute!

We got to see the dispatch and the jail and just walk around the station. They also got to see the police car with the lights on. They have all ridden in a car before, too. They LOVE the car. Thatcher, who has been anticipating this moment for about a year, had a prepared question. It was pretty adorable. I swear it is moments like this that keep me human and grounded. Like I said, if given the time, I could probably sit at my computer all day or just study and read all day. But, my kids and my nephews on both sides of the family are such a blessing.

I am sure most of you parents and aunts and uncles would agree that kids keep us young. I think they also keep us honest and they help us to be real people. My kids wouldn't let me be phony person if I tried. Morgan would have me pinned against the wall with her truthful personality and I am glad for it. I still can get lost in my writer's head. I can create theories and stories all of the time, but then they are can fly out of my head as quickly as they came in. Because I am so busy with the kids, I don't have a lot of time to write now.

But, the playing with my kids does feed my soul so that I can go back to the drawing board and rethink my writing ideas. I always talk about my book on this blog and elsewhere. Well, I have about three books in my head. I am actively working on one, but there are a couple of other ideas that have popped into my head. I usually wait to see if any idea keeps coming back to me. Right now, all three have come back to me and are waiting for me to do something with them. These are all books about my story, a breast cancer survivors story. They are just from different vantage points.

Today, I am going to brainstorm with a friend regarding one of these ideas. I can't really tell you about the ideas because I want them to be a surprise, but for now I am just excited that the ideas are flowing. Spending time with my kids and nephews helps me to feed the writing side in my personality. So does cycling and a variety of other things. The irony about my cancer is that it has made me slow down and, as a result, I am actually living my dream of being a mom and being a writer. Funny how that works, huh?

What is that old adage that life is what happens when you are planning! So true. I still plan, but I try to let life happen more than I used to. I am living in the eye of a storm called cancer, yet I am able to live a relatively productive and peaceful life. I am more content than ever before because of the love that surrounds me. Life is good. I hope each of you are surrounded by love and are living your dream!

Blessings,
Lolo

A quick picture.

2008-07-28T14:01:00.004-05:00

Here is a quick picture of me in one of my new hats. I have lost most of my eyebrows now and most of my eyelashes. In truth, you can hide looking sick if you have wigs, but it is hard to draw in the brows and wear fake eyelashes. It is not really my thing. I will do it on special occasion. The fake brows are way easier than the lashes...I imagine poking myself in the eye quite a bit. We will see how it goes when I try.

People have said they really like my hats, but once again, there is really nothing special to my hats. I avoid baseball hats as they make me look bad...in fact, it is hard to fill out a baseball hat with no hair on the top of the head. So that is why I avoid them altogether. Beach hats are great for anyone, the same with newsboy type of hats. Most of mine I have gotten at Wal-mart, Gordmans. I did splurge to get a couple at Nordstrom's when they were on major SALE. Otherwise, at hat look is totally achievable.

Blessings,
Lolo

Half a percent.

2008-07-28T08:44:00.003-05:00

So, in my laymen's understanding of cancer diagnosis, I will tell you that lymph node involvement with cancer CAN be a prognostic indicator that the cancer will recur in the body, but DOES NOT always mean this. This is where the adage "Everyone's cancer is unique" really comes into play. I think it is important to note that when physician's are using these indicators, a lot of times they are using standard studies that evaluate everything on a five-year length of time. That is why they tell you your odds of living in five-year terms.

Now, if you are a young person like me, you will find the odds of living beyond five years to be more than shocking and a little insulting. The same is true for any statistics regarding survival within five years. Once they gave me any number less than 100%, I told them I wasn't interested in the information. There is actually an internet tool that doctors can use to enter in your type of cancer and the meds that you use and your survival stats will shift based on the treatments you do. A bizarre way to manipulate data.

I remember being irritated with my first oncologist because regardless of the data he entered in the search engine, I never got to 100%. I was an A student my whole life, and just wanted a chance to get an A, but I was barely making a B in this classroom. So, I decided their measures were measures they would use for themselves and that I did not want to be involved with any percent survivals or any numbers anymore.

I am a numbers girl, at heart. Don't get me wrong. I love math and I loved my jobs that involved data management. Michael runs a company that does data management. We are a data geek house, yet when it comes to your own life...when do statistics matter? The only stat that I let affect me is that as a 32 year-old woman, I had a 0.4% chance of getting this disease. Half a percent.

This half a percent helped me to make the decision not only to have a mastectomy, but a bilateral mastectomy. The percentages of local recurrence increased year over year in the breast tissue. I can not remember the specifics, but all the percentages were bigger than half a percent. So, I didn't want any of that vulnerable tissue on my body even if it meant I couldn't nurse another child and that I would lose sensation. The risk was bigger than half a percent.

This half a percent helped me make a lot of decisions. It helped me decide to get genetic testing because they told me i only had a 7% chance of having the genetic markers for breast cancer. Seven percent seems small but it is a lot higher than half a percent. I had to know for my Mom, my sister and my daughter...it turns out I have none of the known markers.

Last but not least, the half of percent is my true gauge of survival. I know many people are told their stats for survival over the five year period and certainly I was at the beginning. However, once we confirmed my initial spot on my liver as breast cancer, that jumped me to stage IV status with my cancer. So, I told my doctor never to give me a survival statistic again because anything greater than half a percent would be fine with me. I could do it because that was my stat in relation to getting this disease.

Like I said, I am a math nerd...but I don't cling to the numbers anymore when it comes to my cancer. As far as I am concerned, any number greater than half a percent is something I can and will acheive!:)

Have a great Monday!
Blessings,
Lolo

The Anatomy of Hope.

2008-07-25T16:05:00.003-05:00

Today, I am a little bummed. Randy Pausch, the political science instructor from Carnegie Mellon who became famous for his Last Lecture, died of complications from pancreatic cancer. It is so bizarre to me that he died today and the internet already has the information. It is so quick. I know his cancer is different than mine and I know that I am doing really well, but it is hard not to feel the effects when someone great dies of your disease. Tony Snow died three weeks ago from colon cancer and now Randy Pausch. These people are great people who faced death in such a graceful fashion.

I bet you all didn't know that I do face my mortality every so often. I look it in the face and I deal with it. I respect the disease that I have, I also have a healthy fear of it. Yet, I also have hope. I have real hope based on meds and treatments and so forth. I am grateful, but that doesn't mean that other people's stories don't affect me. I process their passing as a grieving of a friend because I feel that I relate to them. It is hard to find people I can relate to in this wild cancer club, yet I look for it because it helps me cope. Their stories help me find my place in this world.

I try to view people like Randy Pausch or Tony Snow as cancer successes because they did have hope and they used their experience to help others. I can not change their diseases. If I could, I would. If I could take cancer off the face of this earth, I would figure out a way to do it. But, I understand these things are out of my control. In many respects, I am just glad I got to see a glimpse of their wisdom before their cancers over took them. I don't think they lost their battle with cancer, but, in fact, they won because it didn't affect their souls. They lived with the knowledge of what they were facing. They also lived with real hope and honest wisdom.

I have been reading this book recommended to me by a friend. It is called The Anatomy of Hope by Jerold Groopman. It has been a great book for me because it is really hard for me to describe why have hope and why I feel that it is real and tangible to me. Groopman is a physician and he takes you through his emotional evolution from being a newbie doctor to being a patient, himself. He is an oncologist. The first half of the book, he really describes these interesting experiences of people who either recovered from their disease or did not.

The ones who did recover often had a hope that was indescribable. One such situation was a colleague of his who had a terminal stomach cancer. His fellow doctors all believed he would succumb to the disease, but he didn't. Groopman met up with him years later and confessed to the fact that none of them thought he would live. The physician who was a stomach cancer patient knew that at time time, but he also felt he would survive. His wife, who was his strength, gave him hope every day. The patients Groopman highlighted who did not recover, were often situations where he felt ill-equipped to help them as a physician. He could help them with the medicines, but did not know how to give them hope in the situation. He later went through his own issues with chronic pain and that is when he really started to understand hope...that is when medicine became personal for him. That is also when he ran into a Hope Stealer.

Who are Hope Stealers? They are those people who take the wind out of your sails, or barrage you with negativity so that you can not achieve what you need to do. As a patient, I have had one or two Hope Stealer physicians and I can assure you that they have left a lasting mark on me, even though I consider myself to be mentally fit to take on this disease. I work on forgiving them, but I get angry because for whatever reason, they were so cold and aloof to me. One physician was pretty mean to me. I tried so hard, but I know I let his words sink into my skull and absorb into my brain. I breathed in that negativity and let it strip away my hope. This is because no matter how strong we are as people, I truly believe there is nothing worse than rejection from the medical expert. It is jarring and difficult to get over.

Regardless, I know that I had a part in letting that physician steal my hope. I let his words affect me. I let his actions chip away at the person that I am and that I know I can be. I would often say he made me mad because he abused his power with me and probably did with less confident patients. But, the truth is he just really attacked my ability to heal, which is a difficult thing to hear. So, I am working on forgiving and I am working being stronger in the future. I encourage each of you to recognize that you have a role in this process, too. When hope-stealers come your way and confuse, try to remember that things aren't always what they seem. Maybe their confidence is a cover for insecurity. Who knows why people do such mean things sometimes, but I always try to remember that it is not really about me. It is about them. I am just in the way at that moment. That is all.

Like I have said, I am a fan of thinking that life is good and that people are good. Ultimately, I will trust people until they prove me otherwise and I believe this optimism is a good thing. I have many lovely people in my life who are amazing and honest and good. I know that the Hope-Stealers are few and far between, but somehow we let them affect us more than the goodness that surrounds us. Or at least this has happened to me at times. So, this is one of the things I work on...constantly.

Groopman's book is great because at the beginning he reminds me of some doctors I have met that I didn't sync with. But then he evolves and a doctor rejects him, tells him that there is nothing they can do for his chronic pain. The doctor was an expert in his field so he believed him. Who wouldn't? Slowly, but surely, Groopman found his way to positive people who would help him heal. He fought very hard to get there, but he is now pain-free and overcome what some physicians would say is impossible. Healing from a chronic condition takes time, but it can happen.

I have really learned the hard way that when someone tries to steal your hope, they are just not the right situation or person for you. If a friend, a physician...whoever, doesn't support you when you are doing and believing good things and creating positive karma for this world, then it is okay to question whether they belong in your life. And, rarely, they may be someone that you need in your life for a while...like a physician or someone at work...so you may have to accept them without accepting their perception of you. This is not an easy thing.

That is why I am working on forgiveness and realigning my expectations with what is reasonable. Groopman's book has been a good tool to affirm whatever I already know...that my perspective is built on real hope with solid information that I am healing. If any of you ever want to take a chance on his book, I believe you won't be disappointed. His awareness of the biology of hope (explaining the mind-body connection) and the role of fatigue in chronic conditions is extremely enlightening. I truly appreciate and understand his perspective and evolution from doctor to caring physician.

I hope I have explained this subject matter well. i am not feeling well today and it has made my brain a little scrambled. I wish each of you a wonderful weekend! I will write more tomorrow.

Blessings,
Lolo

The lymphatic system.

2008-07-24T10:52:00.002-05:00

The lymphatic system is such a complicated subject matter. So, I am going to try to explain things as best I can while reminding you that I am not a doctor. Our bodies have a multitude of lymph nodes throughout the body. If you saw a map of the lymphatic system in the body, it would look like several branches with connective points (nodes) along the branches. The nodes collect lymph fluid from our appendages (arms, legs) and our major organs.

According to wikipedia, the lymphatic system has three major functions. 1) It removes fluid from tissues. 2) It transports and absorbs fatty acids and fats as chyle to the circulatory system (don't know what this means) 3) It produces immune cells, such as lymphocytes that fight off infection.

I would really like to focus on point 1 and point 3. Point 1 talks about the removal of fluid. With cancer treatment, doctors will often remove surrounding lymph nodes and test them to determine if the cancer has spread. In my case, they had a sophisticate test that could source the lymph nodes closest to my tumor on the left breast. Even so, they removed 5 lymph nodes, which is a small number in relation to my peers.

However, there is a risk that takes place because of this removal of any lymph nodes. The lymphatic system can become stressed because there are less nodes so when it comes to swelling of the arms, the process to bring fluid back in to tissue in the core of you body, the lymphatic system may seem more taxed. Many breast cancer survivors have to do preventive things to ward off lymphedema. This is a condition where the body has trouble removing the excess fluid from the arms and the arm that as affected becomes swollen.

So, what does this mean to me? Well, I have gone into an Occupational Therapist and done learned preventive exercises. I have not had any major lymph issues because I exercise and because I don't take any risks with my left arm. No blood pressure can be taken out of that arm and they can never take blood from that arm...so that limits some of my medical treatment. However, we have worked around it. I have a port in my right arm which the treatment meds go into...so no arms are available for blood pressure. They take blood pressure out my leg, which is funny to me. I am used to it by now.

When I have had to go into the hospital, Michael is always tenacious about making sure they put signs on the wall so that no nurse or assistant will take my blood pressure or blood from my left arm. They usually put signs up, but if they don't, he will make sure they get that done. It is important because my lymph system is already taxed from having 5 less nodes than before. Some survivors have up to or more than 17 removed.

I also got a compression sleeve that I wear at night sometimes. It helps to keep the flow of lymph fluid away from my arm. I can't wear the sleeve for long as it is pretty tight and I have the smallest size. However, I just wear it when I notice even the smallest swelling in my arm. This can be when it is hot out and we are more prone to swell. Because there is more fluid to extract from the arms, it takes longer for it to happen. So, I try to do things to help the process along...like stretching the arm and wearing the sleeve for a little.

Okay, gotta take a break. I will write more in a bit about lymph tissue and the warding off of infection factor.

Blessings,
Lolo

On the horizon...

2008-07-23T08:49:00.001-05:00

Was going to write this post this morning, but I have run out of time. I have to go to a writer's group and learn how to be a better writer! Anyway, when I get home, I am going to write about the lymph system and why we swell. Yes, I am sure you have wondered why edema (aka swelling) happens in your body. Well, I am going to tell you about it so I can then tell you about the importance of the lymph system! FUN! FUN!

More later,
Lolo

An anniversary.

2008-07-22T13:00:00.003-05:00

This time last year, I was in surgery. I was having my lungs operated on, with two small masses being removed and the bottom lobe of my lung excised for precautionary purposes. We just got back from Omaha and I have lots of cleaning to do, but I did just want to stop and take a moment and tell you all about this anniversary.

Though many people view surgery as a bad thing, a necessary evil. I view it as a tool for battle. Most of my surgeons have been extremely kind and thoughtful people who have pushed me forward on my pursuit of healing. This was true of my lung surgeon. Even when recuperating, he would remind me of the bike and that I needed to get up and get out of bed so that I could eventually get back on the bike. By the time I left the hospital, I was walking two miles a day around the hospital because I needed to believe I could do it.

The surgery is the source of the scene I wrote about with my daughter and me...that is the story MY THIRD LUNG. The surgery is also to be a source for at least two chapters in the book i am working on. The surgery got in the way of my bike training, but if I am looking at the big picture...it only helped me in the long run. It was a success. I skated through recovery, not because I am special, but because I believed I could do it.

Cancer has gotten in the way of my bike training this year, too, but it will not slow me down in terms of life goals. I may have to cut back on the races I wanted to be involved in because of the logistics with chemo. But, I plan to ride the bike tonight on the anniversary of my surgery and relish the fact that I can do this while on chemo. Resilience is really the theme for this journey, resilience and hope.

So, if I can ride the MS150 after this major surgery, then YOU can do whatever it is you want to do with your health. You have the power to make change. There is no difference between us in terms of capabilities. We are the same. You can overcome any obstacle and make positive things happen in your life! Believing in yourself is the first step. Just like I got out of the hospital bed and started taking those steps towards getting back on the bike....so can each of you!

Blessings,
Lolo

What you believe, you become.

2008-07-21T07:39:00.002-05:00

So, Michael, Mo, Jack and I are in Omaha. I am sitting in our hotel room while the rest of the crew is asleep and I thought I would write a post. We are mainly here because I bought tickets for Mo and me to see the Jonas brothers tonight. If you don't have a seven-year-old, or a Hannah Montana fan in your house, then you probably don't know who these kids are. Basically, they are three pretty talented brothers who are very cute and are on tour right now. They are very busy for young kids, but it seems like their parents are pretty involved with the process and the boys are very musically talented. They were just in Camp Rock, a Disney musical, and one of the girls from that musical is opening up for them in the concert tonight.

Anyway, Michael and I made the executive decision not to take Jack to the concert as he doesn't really like to sit for long. Actually, neither do I , but I am an adult and should act like one. Regardless, we are all heading to the zoo today, then we will break off into the concert group (Mo and me) and the Plunkett boys(I think you know who they are:). Some of the interesting things that have happened along the way so far....are that we went to the Omaha Royals game yesterday. We got their faces painted and balloon art for free. It is such a fun stadium, very kid-friendly. We also went to dinner last night and swimming. We all believe that the two mega-vans that are sitting outside our hotel room are for the concert tonight. Noone can really tell us differently at this point...even if we are wrong.:) Morgan, in particular, sat at the window last night and watched for Joe Jonas to emerge all night...this is the one she is going to marry.

I did get to break away and do a little shopping last night. I went into this earthy store called The Lotus and bought a necklace that has a quote from Buddha, "What you believe, you become." I have been reading a lot about the power of positive thinking, about the medical aspects of it. Of course, if you have read this blog before, you know that I have a desire to understand things at a cellular level because that is where cancer starts to break down the body. I have been researching mind-body connection, from a scientific viewpoint. I understand the mind-body connection at a spiritual level, but no everyone is that way so I thought I would explore some new books with unique perspectives and see what I come up with. In the meantime, I got this neckace to remind me that regardless of where anyone is in their faith, or what they believe, remaining positive and believing in the good aspects of life is where things are at.

There are many things I work on besides the cancer that I forget to share. I mainly work on trying to remember that my cancer is unique, that someone else's story of death does not mean it will happen to me. Sometimes, because I have cancer, people can share these stories with me and they always upset me because I am empathetic. I don't want anyone to die from cancer, yet I try to remember that I can be sympathetic to to others while believing in my capacity to heal. Cancer does not have cooties anyway. You and I can't catch it from someone else. Our own cells grow in our own way so if we get cancer, we have our own breed of a type of cancer.

I also work on forgiveness, a lot. I didn't realize I needed to forgive people, but mostly I need to forgive myself for being such a perfectionist and expecting too much of others. My forgiveness practices are just where I meditate or write about the issue and then give it away(in my mind). I always address my role in the issue and then I give it wings to fly so it won't upset me anymore. I have to do this several times before it is gone from my mind, but it does work. I also have an inner prayer life that I don't talk about much. This is not because I am ashamed, but because I promised this blog would not be about preaching to you. I love to share my faith,but I feel right now, my burden is to share my cancer experience with you all. Any other discussion, should probably go off-line as it is not the focus of this blog. Feel free to email me about it if you have any questions. Regardless, I did want to let you know that I do have an inner prayer life and my work on my spiritual relationship with God daily. I believe this is an important aspect of my healing.

I do believe that I can address my cancer through medicine. I believe it could probably stabilize alone with just the meds, but I know I need to be mental and physically armed for battle. This includes a complete approach with some of the things I have mentioned above. I will try to remember what else I do and mention them in another post. Mainly, I just try to be fair and good and honest with myself. I am have a long way to go before I am an adult, but I am working on it while I work on my healing. All is well, life is good.

I hope you all have a wonderful Monday. We are definitely going to have a fun day in Omaha!

Blessings,
Lolo

As promised, pix of old wig.

2008-07-19T10:20:00.006-05:00

Here is another series of pix of my old wig. I asked my hair stylist to trim the ends off. It is a real hair wig and I fried it a little by using my flat iron all the time last time I had chemo. Robin, my hairstylist, is SO good. She has cut this wig like three times and has always made it interesting. The difference between this one and the last ones I have shown is that I can use curling irons and flat irons on it. I can also using styling products on it. With fake hair, they tend to be a bit shinier, and you can only use wig products on them. You can not using any heating products on fake wigs because it will burn the hair. FUNNY.

Anyway, here it is. I always feel like making goofy faces when I take these pictures, but I don't because the purpose is to make people feel comfortable with the idea. Let me know if you all have any questions about wigs.

Bloody noses, battle scars and HOPE.

2008-07-19T08:40:00.006-05:00

Hi friends,

Just wanted to let you know I had chemo on Thursday and am doing great. I got my dose of abraxane, which is the chemotherapy. I also got two pre-meds for nausea and Herceptin, which is my targeted drug. I take another drug orally every night, it is called Tykerb. It is a targeted drug, too.

The strangest side effect I have at this point is related to bloody noses. I forget to talk about it, but they are daily and can last up to 20 minutes. One of the meds, Tykerb, really causes this condition that most people call "crusty nose". Pretty gross. Anyway, it is like each morning I wake up with my nose filled with gunk.

And when I try to resolve my issue, I blow my nose. The bloody nose then follows. The problem is that sometimes my hemoglobin is low and I can bleed pretty easily. Of course, it becomes this vicious cycle of me needing to blow my nose more so I can breath better and my nose bleeding more. Finally, when I can stop blowing, the bloody nose will continue for a while.

This process is an absolute mess. The only reason I am really telling you any of this is because I think it is kind of funny and makes me very human. Often, I write about overcoming fear with the HOPE that I have. I know my mindset and all that I have been through can make me seem a bit super-human. I am not at all. Whatever power I have in me to heal, so do you! We are all made of the same stuff.

I also know that my cancer can make me seem different from most people. I am not sure if it is a fear of me or a fear for me that I see in people's eyes sometimes. Regardless, I know most people are afraid of cancer. I don't blame them. I was afraid of it, too. At times, I am still scared. I try to transition that to respect of the disease, but sometimes it is still just fear. I wouldn't wish this thing on anyone, but I sure have learned a lot of wonderful things through this process. Most of the awareness has helped me to know myself better, to accept my own voice in this world.

I was talking to two of my favorite survivors this week and both of them uttered the same point to me. They are both strong, resilient and believe in their abilities to heal. They both, at times, fear the disease and get scared. But they both said to me that "Death is not an option." When I truly think about this, it angers me that we young girls have to face our mortality in this way. Yet, I feel the same way as they do. Life is the only option. I have people who rely on me and I am fortunate enough to have them.

I have a truly supportive husband and two wonderful kids. I am just starting to come into my own as a writer and an athlete. Cancer is a part of my daily life. We are still working towards stabilizing my disease. I imagine we will get there soon, but that we will always deal with this disease. It will ebb and flow until most of the cancer cells are dead. I don't seek out some dream state where there is no more disease. I do believe I will have complete stability over the cancer, at some point, but it might not look perfect. In fact, I am sure it won't be pretty. I have scars all over me already. My stability could mean there will be tumors in my body, but they just aren't growing. It could mean they are made of dead tissue or are indolent. I don't know and I try not to worry about the small steps in the journey. They don't matter as much as the overall goal.

Whatever the case, the battle scars will be there. They already are...and I am totally okay with them, even a little proud of them.:) Okay, gotta take Mo to Wal-mart so we can get some Jonas Brother's stuff for the concert we are going to on Monday. Yes! Mo and I are going to the Jonas Brothers concert...pretty fun. I have a kick-butt plaid fedora hat that I am hoping she will let me wear...we will see. Life is really good, even for those of us on chemo!

Blessings,
Lolo

A legitimate writer, featured in REDBOOK!

2008-07-16T20:43:00.003-05:00

So here is a picture of me with a check for my FIRST published story. I won first-runner up in this contest and am going to have my picture, name and a snippet of the story featured in the October 2008 Redbook. Yes, THE REDBOOK! So cool. The contest was for a publication in a book, called a Cup of Comfort for Breast Cancer Survivors. Then Redbook hooked into the contest and decided to feature the winner's story, in full, and the three runner's up in the way I mentioned above. I really can't believe it. I keep forgetting to tell people because I really can't believe it. So if you have gotten a random email from me about the contest win, it is because it came to my mind at that moment and I had to share.

For years I have known I would write stories. I have always talked about it, but I thought I would write fiction. But, cancer got in the way and I took an early retirement from working and my need to write my story took over. I don't have much time during the summer to write because I am so focused on the kids, but my plan is to have my book fully outlined in the Fall so I can start submitting to publishers when the Redbook and the Cup of Comfort book comes out.

Michael and I are going to scan this check and frame it. Writing helps me to make sense of this cancer journey, it helps me to help other people and pass on what I know. I am sure it helps me more than any of you, but that is just the way it works. Giving is a gift, in and of itself.

I will remind you all about the Redbook, and the COC book as we get closer to publication. I would be honored if an of you read my story...or bought the Redbook when it comes out! (It is called MY THIRD LUNG and it is a story of Morgan and me in my recovery from lung surgery. It is from her eyes.)

Blessings,
Lolo