Friday, May 30, 2008

Chemotherapy and Cancer Basics, part 2


So, where I left off on the last post (below) was where I was getting ready to explain why chemotherapy does what it does. First, let me reiterate that "chemotherapy" is a term used for many drugs that are used to fight a multitude of cancers. Cancer is a very complicated subject matter with each cancer have various types within the type. It can be overwhelming for the patient, that is why it is important to have doctors who are up-to-date on the meds.

I spoke in my last post about Herceptin. Herceptin is a targeted therapy that goes after a specific type of cell. Another name for this drugs and others of this type are called monoclonal antibodies. Avastin is another monoclonal antibody that goes after her2neu cells. These drugs are like heat-seeking missiles. They look for a cell with her2neu on it and try to destroy it with various chemical methods. Tykerb is another drug that goes after her1 and her2.

The distinctions between the above-mentioned drugs and chemo are many, but the summary is that monoclonal antibodies target a specific type of cell and chemotherapy goes after fast-growing cells. As each chemo is different and I am not a chemist, I can not really do a good job of explaining the method in which they go after these fast-growing cells. I could try, but I wouldn't get it all right. But, I will tell you that chemo is able to go after cancer because those cells are fast-growing. Other fast-growing cells are those related to hair growth and the mouth and digestive tract through the stomach. This is why I am losing my hair and why my mouth tastes raw....like a battery. ICK!

There are many things the docs can do to help with these side effects, but some of the side effects are just things we have to endure. Since the chemo ignites inflammation in my body for the battle against cancer cells, I often find that I am fatigued on and off throughout the day. My hair is shedding slowly, but it all is coming off. I assume I will shave it off this week, but I am holding out as long as Morgan will let me. She really wants to shave it. As far as nausea goes with the stomach, there are so many amazing meds out there now to address this issue that chemo is not what it used to be. I can tell you I have only thrown up once after a chemo session...in all my rounds of chemo. Pretty amazing. Most of the time, I don't even feel nauseous. If you know someone who is going through chemo and has lots of issues in this regard, then we should talk because there are meds that can help to make the process easier.

I find, more than anything else, that the side effect that hits me hard is the frustration of an interrupted life...whether it be less energy to get on my bike, go to the gym or play with the kids These are the personal things that help me feel normal, alive. I am working on my patience with not having as much energy. I know the side effects are temporary, but my life is like a marathon. I am constantly conditioning for my next move against cancer. These are good lessons. Patience is a good lesson, too. I also know new drugs are in clinical trial all of the time. Herceptin has changed my story and the story of many other women. There is no telling what they will come up with next, but I have my eye on many relevant clinical trials that are extremely hopeful. So, as always, I am filled with hope.

Thanks for reading and for the continued encouragement. Let me know if you have questions!

Blessings,
Lolo

Chemotherapy and Cancer....some basics!

I realized yesterday that I am so involved with my medicine and my medical team, that I probably have lost some perspective on how to explain cancer and the medicines I take. It is like when I was in graduate school and started to teach basic accounting classes to undergrads. I had to go back and look at all my old books to remember how to teach effectively.

The same is true of chemotherapy and cancer. I have spent a lot of time on this site explaining cancer so that everyone can understand that it is just an erosion of cells. If a person were to live a lifetime of approximately 90 years, they would have a 1 in 2 chance of getting cancer if they were a male and a 1 in 3 chance of getting cancer if they were female (per the American Cancer Society). This is not meant to scare you because let me assure you that if you get cancer at the age 90, your cells are growing and dividing at a snail's pace so you could live a long time with the disease and hardly have it affect you.

One of my big problems is that I am young so my cells grow and divide at a much faster pace than an older person. Honestly, this is not a bad thing unless the body gets in the habit of growing something it shouldn't...like cancer cells. Our immune systems can normally destroy a cancer cell before it gets out of control, but for some reason...my cells weren't communicating that effectively so cancer was not halted when it should have been.

That is when chemotherapy and other drugs are utilized. I would like to make the distinction that chemotherapy is a term used for a multitude of drugs, probably hundreds. Just as each cancer is unique, so are the chemo drugs. After a cancer diagnosis is made, a pathologist(a special kind of doctor who examines tissue) will spend some time running tests on cancerous tissue. The purpose of these tests are to figure out what kinds of medicines will work best for the cancer. Once these assessments are made, drugs are usually selected along with surgery or radiation as other options.

Sometimes, the cancer cells can develop resistance to drugs over time because our DNA is way to smart for us. Just as normal cells can evolve for the good, so can cancer cells evolve for the bad. I believe this is one of the reasons I am still dealing with cancer. I have a cancer that was not fueled by estrogen or progesterone, but was fueled by an oncogene called her2neu. This gene sat on the outside of my cancer cells and fueled their growth.

One of the drugs I take is called Herceptin. It targets her2 cells and tries to destroy them. There are other proteins like her2, there are actually her1, her3 and her 4. I take another drug that tries to wipe out the her1 and her2 in a different way than Herceptin. It is called Tykerb and it actually goes inside a cancer cell and works to destroy. However, there is some line of thinking that my cancer may still be able to use her3 or her4 to grow. So, on the horizon are drugs that tackle her1 through her4. There is one, in particular, that is in clinical trials right now. These drugs are called targeted drugs as they only go after specific characteristics such has her1 or her 2. They are not a chemo.

Gotta go for a bit, but my next post will explain why chemo takes your hair, causes nausea, etc.

Hope this helps explain some things!

Blessings,
Lolo

Wednesday, May 28, 2008

Growing flowers, not cancer.

So I decided to take on the project this year of growing flowers. I figured this would help my mind-body connection to adapt to growing something other than cancer. I have a small area of land in front of our house that is shaded by the trees and difficult to plant things in. I have tried each year to put something in there. My preference would be tulips, but those require full sun and my front yard is mostly shaded. Last year, I planted four hostas and the lady at the store told me that if I couldn't grow hostas...then I couldn't grow anything. We both laughed at the time, but I knew those darn hostas weren't going to grow. They didn't.

This year, I went for impatiens. I went through a couple of rounds of them, but I now have pink and purble impatiens in the little garden. We will see how they grow. I know I have not been good at growing anything green, but I am never afraid to try to new things and work on being disciplined. AND, I need to grow something other than cancer. So, I water my plants every day...when it is not already raining and I try to help them grow. They seem to be doing pretty well. I have much hope that they will thrive, just as I have much hope that my body can halt the growth of new tumors and/or destroy the tumors that have been there. There is much hope!

Have a wonderful night!
Lolo

Monday, May 26, 2008

Chemo and how it changes things.

So, I am halfway through this eight week process of chemo. Keep in mind, that things can always change. The doctors could want me to do more chemo. but I bet my liver is in check and we can move forward and do a clinical trial when this is over. Just as things can turn bad, they can also flip to the good.

As far as my tolerating this chemo, i have had to alter my diet a little. Before chemo, i was going for a vegetarian approach. i will continue that after the chemo...but not only are my taste buds changed, but my body is tolerating food differently. I am not sure why, but it seems that I have a better ability to digest meat than I did before. I just realized that this week after I kept trying to push veggies, but I wasn't getting enough food.

I had a freak out moment when the nurse asked me to get on the scale and my weight was very low. I know most women would be excited about this, but for me...weight and nutrition are imperative to healing. When I get sick, I have a tendency to lose weight. That is how it has been since I was a kid. The same is true for episodes of depression. I can easily lose my appetite and often have to eat regardless of if I am hungry. I find that life and everything else can get in the way of me eating. I can often go long periods of time forgetting to eat. I know most of you would think this is crazy and it is. It really is.

However, I have worked on my nutrition and even though I like to exercise because it takes the edge off of my anxiety, I have found it difficult to find foods that can help me feel strong and work on getting stronger. I have difficulty getting enough food. So, I thought I would let you all know I have gone back to meat for a while. A big confession, but it has allowed me to put a little more weight on and feel stronger. Who knows, maybe the chemo puts more acid in my stomach causing me to digest meat better. Regardless, just doing veggies alone has been a problem for me while on this medicines. It was making me not want to eat, which isn't good. So, I am living like a carnivore for a while.

As far as everything else, my taste buds are kind of shot. Chemo goes after fast-growing cells and the mouth is a target in this process. Lemon drops help so i bought some over the weekend. Though I got a break from chemo last week, the fatigue is building over time so it has been difficult to exercise. I did walk yesterday...about 3 or 4 miles which was nice. I plan on getting back out on the bike once the hair loss is done. My scalp is pretty sore still and probably will be for a while. The thought of putting a helmet on my head is not appealing, yet helmets are important...so I will wait a little longer. It is hard for me not to be on the bike. I am addicted, but patience is a virtue that I need some work on...so I will work on it.

Overall, I feel pretty good. My comments above are not meant to be a complaint, just a status report. Each day is a blessing to me regardless of chemo.

I hope each of you had a wonderful Memorial Day!
Lolo

Sunday, May 25, 2008

Pictures of hair status...

A representation of my continued fighting spirit against cancer! I am goofy.
Me, in one of my new hats! It is terry cloth and soothing to my sore scalp.:)
Me, with about two day's worth of serious hair loss. There will be more!

Okay, so I wanted to show you some pix of my hair loss status. See yesterday's blog for the "emotional" update on my hair loss. Writing it helped me to set free all my frustrations regarding this process, or at least most of them. I am showing three pictures and the first one is meant to be a joke, it represents my stance on cancer. The second two just show me in one of my new hats and me with my new hair loss. These pics were just taken this afternoon. It is hard to tell, but I have lost a lot of hair. Oh, and I have my breast cancer advocacy logo t-shirt on! My sis and I are going to try to sell some for our Komen 3-day fundraising efforts. We are working on getting some black and pink t-shirts for everyone who donates. FUN!

I hope each of you have a blessed Sunday! I am going to walk my dog soon so that I can get some mileage in for training for the Komen 3 day walk!

Lolo

Saturday, May 24, 2008

The Yellow Wallpaper

When I was in college, I took as many literature classes as possible. I fell in love with English, as a major. I studied American, British and Greek literature...and any type of story I could get my hands on. I did not always understand what I was reading, but that was okay. I was learning and I realized early on that the rest of the class didn't always have a clue either. Everyone puts on an act, we all do it. I just decided that regardless of if I knew the actual meaning of the story, applying myself was part of the journey. In many ways, the journey was the lesson. I would often realize this after the fact, but I am trying to get better at figuring that out now that I am a supposed adult.

Regardless of my love of English, journalism, writing, etc. I had to be practical when it came to my degree. I also loved math so I became an accountant through a round-about way. I have no regrets as I met my husband through this process, but I wanted to share with you one of the stories that has stuck with me since my sophomore English class. It is the Yellow Wallpaper by Charlotte Perkins Gilman. If you haven't read it, you might want to look it up on the internet. The whole story is actually available for FREE. So cool! I love FREE. I remember reading it for the first time and thinking the narrator was captivating, yet her pacing was hectic and she was confusing. It turns out she is a bit crazy...to say the least and the yellow wallpaper in her room makes her even a little more nutty.

I am sorry to say it, but I have to spoil the ending in order to make my long-winded point...which is that she rips the wallpaper down piece by piece. I won't spoil the actual meaning of why she does it. You can read it if you so chose, but she scrapes at the wallpaper like the mad woman she is. She needs to get the wallpaper off of the wall. She can not help it. She is compelled. It is driving her mad. She thinks it will help if she keeps pulling so she lets her irrational desire overtake her.

This story and the madwoman is probably the best way that I can explain what it is like to lose my hair because of chemotherapy. I feel like that mad woman pulling the wallpaper off the wall, except the wallpaper is my hair and the wall is my scalp. I am compelled, driven by pain. At times I scratch it because the tingling is a raw ache. Once you scratch one area and get that resolved, another area picks up. It doesn't matter where it is, the dryness of the scalp can make a normal person go insane. Wherever you scratch, hair falls out. It is a bizarre experience, something no adult should have to endure.

The best thing to do is to shave it off, yet that does not get the hair out of the follicle. This separation must still take place; the shaving just helps with the weight of the hair. My scalp has been aching for a couple of weeks, but when the alopecia really kicks in, it is a bit unbearable at times. It has made me an irritable person, though I try to hide that. I don't like being cranky, I don't take my issues out on other people. But I find the only way not to be frustrated is to remove myself from the world so I can be the madwoman and rip out my "wallpaper".

Michael and I went out on a date last night and I got my short hair into a funky style, but I started to get too comfortable with my new look. That is when it happens, when the shedding takes place. After we got home and got the kids to bed, I laid down and could not get to sleep. I could not stop scratching. I got up and did just about anything I could to get the hair out of my head. I know that sounds insane, but it is an natural drive. It is like I have no control over it. If you itch, you scratch. I got a lot of the hair out, but was not really able to get to sleep until around 5am. The problem was every time I laid my head down on the pillow, the raw irritation would re-awaken....and I would scratch, scratch, scratch.

Today I took a shower with shampoo formulated for the dry scalp caused by chemo and radiation. And, I pulled as much hair out as I could. I know that sounds crazy, again, but it is what it is. Morgan and I went shopping for Michael's birthday(tomorrow) and I got some fun hats to help my inner diva come out. I have a wig, too. I keep preparing, but there is no real way to get comfort around losing all your hair. It is impossible to accept, yet a necessary part of the game for me.

So, what will I do? I will probably have Morgan and Jack shave it tomorrow after church, if I can make it through tonight with the pain. I would like one more day with bangs and hair peeking out of a hat. Then we will shave it and I will move on. I will accept it. I will talk about it with people to make them feel comfortable with me, to acclimate them to diversity and I will act like I am fine with it...because that is what I do.

Yet, every once in a while, when I have on an Audrey Hepburn hat and oversized glasses, the tears will form in my eyes and I will work to keep them back. I will try to forget that I am embarrased to be bald, that I have been proven to be "human" once again. However, I will then remember my sophomore literature class in college and think about the journey. I will try to remember that life is about the journey, not the end of chemo or when my hair grows back in. I can't hold my breath until that happens, I have to breath now.

I know I am fine. I know I am healing. I believe in my ability to respond to medicines. I know I am fierce competitor. So if losing my hair is part of the battle, I will do it so I can win the war!

I hope this gives you a peak into what this strange experience is like. Blessings to each of you!
Lolo

Thursday, May 22, 2008

Search for Meaning




No hair loss yet. Not sure why, it should be coming out by this weekend. I asked my hairstylist to cut my hair super short this week because it was already starting to ache. I am not sure why this happens, but when chemo-induced alopecia takes place on the scalp, it really hurts. I learned the last time that it is just best to shave it off once the floodgates open up. However, those gates have not opened yet so for now i am enjoying a little more hair than I will have in a week. Since she cut the hair off, there is less aching, which is nice.

I have promised both Morgan and Jack that they can shave my head when the time comes. This really helps younger kids to feel a part of the process and to somehow take control of it. It is the same for me. I look for things or situations that will help me feel empowered. Granted there are a lot of choices with cancer that are not really choices, they are "must-do's"...such as doing chemotherapy and/or a surgery. Sometimes the options are limited. However, even in those situations, I come to a place where I feel as though I am accepting the decision. I may not be in control of what is going on, but I can take part in acceptance...which is HUGE.

I have met many cancer survivors in my last three years who are really "survive and thrive" kinda girls. These are the ones who take charge of their medical team, evaluate their nutrition and take part in ALL choices associated with their disease. The come to the table with good questions and don't accept answers that don't make sense. They make the doctors explain things so they can understand. These women thrive through cancer, often find a real identity for themselves through this awful health issue. They find their voice and they start using it!

I have also met women who have what I like to call 'Be-my-brain syndrome". These are the ones who accept the doctors assigned to them and just try to close their eyes through the whole experience. There may be shame associated with the disease, their may be guilt. I do not fault these women for feeling this way. There are times that all of us feel that way. I would love for there to be a Laura Plunkett sitting across the table from me...she would be five years older than now and she would tell me all the decisions to make. But, that is not the way life works. We can choose to the let the doctors make all the decisions, but often we will find ourselves feeling powerless in the situation because we are taking a passive seat in the cancer car.

About three months before I got diagnosed, I read this book called "A Man's Search for Meaning" by Viktor Frankl. Frankl wrote about his experience in a Nazi Germany concentration camp. He was a psychiatrist, an observer. What he learned through his experience was that the people who could visualize themselves on the other side of the camp...the ones who found purpose in their situation were the ones who survived. The ones who took a backseat to the process and had given up hope, they were often the ones who did not make it through the camps for various reasons.

This book was so enlightening for me. It is still one of my favorites. It gave me tools to understand my cancer situation, to know that I must find a purpose and that I can survive this wretched disease. I have had a couple of times when doctors have stolen my hope or made me feel a lesser of a patient, but those situations are so few and far between. They are miniscule in relation to the wonderful, empowering medical team I have.

I have found purpose in my disease. I own it. I call it "my disease" because it is mine. I do not think it is ugly, in fact it is just a part of me. I face it daily and I work on every aspect of myself (including personality, mental health, emotional health, physical health, nutrition). I have transformed my life from the anxious girl four years ago to the woman who takes on cancer. There is no stone unturned from my end because I am in a battle for my life and I plan on winning. I also want to help each and every one of you address your own health issues. YOU are part of my purpose. I don't mind being the guinea pig with this and I know we have had a lot of downs on this journey that are probably easier to focus on than the ups. But, if you think of those downs, just try to visualize me as a 90-year-old scrappy grandma who is still riding her bike and teaching her grandkids to do the same. That is what I see in my future.

Find purpose in your health issues and recognize the small steps of progress that you make each day because they matter!

Blessings,
Lolo