Saturday, August 30, 2008

How cool are my cousins?

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

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

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

Blessings,
Lolo

Happy Saturday!

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

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

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

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

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

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

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

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

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

Happy Saturday!
Lolo

Friday, August 29, 2008

The little things...

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

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

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

Blessings,
Lolo

Wednesday, August 27, 2008

Another day of rest...

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

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

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

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

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

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

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

Blessings,
Lolo

Tuesday, August 26, 2008

Surgery done and am recovering.

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

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

Blessings,
Lolo

Saturday, August 23, 2008

Did I tell you?

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

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

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

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

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

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

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

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

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

Have a wonderful and bright Saturday!
Lolo

Friday, August 22, 2008

A little under the weather...

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

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

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

Blessings,
Lolo

Wednesday, August 20, 2008

Scan results are good.

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

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

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

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

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

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

Monday, August 18, 2008

Check out the new pictures!

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

Big day!

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

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

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

Blessings,
Lolo

My three-day team!

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

Blessings,
Lolo

Sunday, August 17, 2008

Chiefs!


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

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

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

Blessings,
Lolo

Saturday, August 16, 2008

Why Pink?

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

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

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

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

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

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

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

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

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

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

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

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

Blessings,
Lolo

The kids and me, being our goofy selves!


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

Lolo

Wednesday, August 13, 2008

Hiya, again!



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

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

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

Blessings,
Lolo

Tuesday, August 12, 2008

Everyone Deserves a LIFETIME!


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

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

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

Blessings,
Lolo

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

Monday, August 11, 2008

TMI

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings!
Lolo

Booie!


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

Blessings,
Lolo

Sunday, August 10, 2008

My team finished the 3 day walk!

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

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

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

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

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

Blessings,
Lolo

Saturday, August 9, 2008

40 miles down, 20 to go!

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

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

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

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

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

More later...
lolo

Thursday, August 7, 2008

Two sisters.


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

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

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

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

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

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

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

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

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

Blessings,
Lolo

Wednesday, August 6, 2008

Peace!


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

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

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

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

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

Blessings,
Lolo

Monday, August 4, 2008

How much longer?

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

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

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

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

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

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

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

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

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

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

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

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

Blessings,
Lolo

Sunday, August 3, 2008

Sometimes, I wonder...

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

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

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

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

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

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

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

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

Saturday, August 2, 2008

I am a little tired today.

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

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

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

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

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

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

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

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

Please have a wonderful Saturday.

Blessings,
Lolo

Friday, August 1, 2008

Heading to the pool.


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

Have a wonderful day!
Lolo