Thank You Everyone!

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

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

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!

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

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...

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

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

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...

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!

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...

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!

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...

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!

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!

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!

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...

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!

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...

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.

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.

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...

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...

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...

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

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!

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...

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!

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!

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.

What is Pass It On!

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

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!

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.

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!

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...

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!

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

Lolo

Old friends feed the soul.

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.

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!

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!

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!

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

(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!

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!

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.

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.

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!

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