Cheer

This week has been good. I feel happier and more hopeful than I’ve felt in months. It almost feels like I’m waking up… like I’m opening my eyes and looking at the world the way that I used to. I feel so relieved. There have been some days so dark in the past few months that I thought I might never come out of it. But being sad is so damn exhausting! It’s not like I’ve had some sort of enlightenment. I’m still pissed off and feeling sorry for myself to some extent. But at some point you just have to put those feelings in a box and close the lid. I’m finally starting to feel like I can do that… like I can have some control over how I feel and when I allow myself to feel it.

I even feel like being social! Which I haven’t felt in months. I’m so lucky to have friends who wouldn’t let me sit in my apartment and sulk the way that I wanted to at times. My friends are kinda the best. Kinda = Completely.

Not being able to drink has been another major reason I haven’t been wanting to socialize. It’s been much harder for me than I thought it would be. I knew that I would miss it, but I didn’t realize how much I used it as a social crutch. I guess because I drank so moderately, I didn’t think I depended on it that much. But really it only takes a glass or two to make a difference. When I go to parties now, I’m entertained for about 2 hours. Then about the time that everyone else is lit, I’m burned out. And of course it’s harder to be silly.. for me anyways. So I guess that’s something that I’m going to have to work on and hopefully one day master, because silly is my favorite state.

My friend Robert has vowed to not drink for 2 months, to show his support. He even sealed it with a pinky swear, which I take very seriously. It means a lot to me, especially considering that I know how much the boy likes to drink. So if you see this man with a drink in his hand, please tell him to be a better person.

I’m sure there will be times when I won’t be able to keep the lid on my box (I think that came out wrong). But with practice I hope to be able to live in blissful blissful denial as much as possible.

Descendents – Cheer

Survivor: The Workplace

Well, I survived another round of layoffs. I lost some of my closest working buddies, but I’m still standing (for now). Keeping a job has become extremely important to me since being diagnosed with CML. I can scrape by without money, but I can’t scrape by without insurance. If you don’t believe that you have to be rich to stay healthy in this country, consider me. I think the people who know me would agree, I’ve taken pretty good care of my body. I’ve never smoked a cigarette, drank moderately (usually 1 glass of wine a night), abstained from drugs, exercised regularly, etc etc.. But I’m on my second cancer. Yes, second. I was diagnosed with thyroid cancer about 3 years ago and had to have my thyroid removed and received radioactive iodine treatment. So through sheer bad luck (as far as I can tell), it’s mandatory that I have health insurance. My leukemia medication alone runs around $3,000 a month! For the next five years I’m on a study that covers this cost, but after those five years… ? Let’s hope that Obama can play god the way we’re all praying that he can.

Vote Obama grafitti snapped in SLC, Utah last autumn

Learning from My Father

The last week has been super hard for me. I don’t know exactly why. It’s not like anything new has happened. Friday night and Saturday I just couldn’t stop the tears. I keep wondering when it will get easier. So far its only gotten harder. I feel frantic to accomplish all of the things that I want to accomplish. But instead, I feel so stunned and depressed most of the time that I have a hard time socializing and living my life the way I used to. I feel like a deer in headlights. If I’d just move, I might be able to save myself from some pain. But I’m stuck in the road and have no idea which way to go.

I’ve been thinking about my dad a lot lately. He was in his early forties when he died. He had type 1 diabetes (which consequently took his eyesight in his early twenties). He was an incredibly adaptable and positive person. I’m understanding that more than ever now.

He used to always say “Life is good!”. This was his mantra, all the while knowing that his body was deteriorating and that he probably wouldn’t live long enough to see his youngest graduate high school. He rarely complained about his physical condition, the diabetes or the blindness. He got around like a seeing person and it was easy to forget that he took daily injections, because it wasn’t something he brought up. Everyone that knew my dad commented on what an incredibly fun, wonderful and light person he was.

I always miss him and I always wish he were here. But lately I feel like I’ve needed him more than ever. Not just because I could use his support as a father, but I just wish he were here to show me how to do this. To teach me how to do this without self-pity. How to navigate my new existence with hope and happiness. To teach me how to get beyond the fear and start living again. Instead, I just try to remember how he lived his life and know that it is possible to dig my way out of this burden.. his was bigger than mine and he did it.

To end on a lighter note, here’s a pic of my bunny, Radar, taking a piece of lettuce from me. She’s a lettuce junkie. I really should capitalize on that and teach her to jump through burning hoops. Also, I wonder if this is going to become a trend… slapping a pic of a rabbit on the end of any post that makes me feel exposed.

A+B = Cure

This was posted back in June, but I find it fascinating and thought I would share.

Math Could Help Cure Leukemia
When kids complain that math homework won’t help them in real life, a new answer might be that math could help cure cancer.In a recent study that combined math and medicine, researchers have shown that patients with chronic myelogenous leukemia (CML) may be cured of the disease with an optimally timed cancer vaccine, where the timing is determined based on their own immune response.

In the June 20 edition of the journal PLoS Computational Biology, University of Maryland associate professor of mathematics Doron Levy, Stanford Medical School physician and associate professor of medicine (hematology) Peter P. Lee, and Dr. Peter S. Kim, École Supérieure d’Électricité (Gif-sur-Yvette, France) describe their success in creating a mathematical model which predicts that anti-leukemia immune response in CML patients using the drug imatinib can be stimulated in a way that might provide a cure for the disease.

“By combining novel biological data and mathematical modeling, we found rules for designing adaptive treatments for each specific patient,” said Levy, of the University of Maryland Center for Scientific Computation and Mathematical Modeling. “Give me a thousand patients and, with this mathematical model, I can give you a thousand different customized treatment plans.”

Math and Leukemia
While the marriage of math and biology is only beginning to catch on in science, there have been other attempts to use equations to understand how leukemia develops and evolves over time. Levy, Lee, and Kim‘s study differed in that it took into account the patient’s natural immune response in conjunction with the effects of imatinib, a drug that has been successful in putting CML patients into remission.

They wanted to see if they could develop a mathematical model, or set of rules, that would increase chances for long-term remission in individual patients. Over four years, Lee’s laboratory collected data from CML patients, measuring the strength of each patient’s immune response, in the form of the numbers and the activity of the anti-leukemia T cells, at different times during imatinib therapy.
“Our results suggest that it is not only the drug that sends the leukemia into remission, it’s also the natural immune response,” Levy said. “After starting imatinib, the anti-leukemia immune response gradually increases. However, it begins to weaken after it reaches a peak. This typically happens well into the treatment.

“Leukemia cells are still present, but in relatively low numbers that causes the immune response to wind down. Unfortunately, this is an ideal time for the cancer cells to develop drug resistance and render the therapy ineffective.”

Best Time for Immune Response
Incorporating Lee’s clinical data on immune response, Levy’s model suggests that the immune response of the patients should be boosted at the time when their immune response starts weakening.

The authors suggest that such a stimulation can be provided in the form of “cancer vaccines,” in which pre-therapy blood taken from patients is irradiated to kill active cancer cells, then introduced back to the patient. A strong stimulation of the immune system was shown to be active in vitro in Lee’s lab experiments.
“The mathematical approach showed that it is imperative to connect the timing of the cancer vaccine with the individual profile of the immune response of each patient,” Levy said. “The mathematical simulations suggest that a vaccine administered within the initial months of the treatment will have no effect on the progression of the disease. On the other hand, a well-timed vaccine can potentially cure the disease.”

Individual Therapy Plan
But the dynamics of each patient’s immune response differ. That’s where the math comes in, says Levy. “We can find rules for application to a specific patient. We can measure each patient’s parameters to find when the dosage will be most effective. Mathematics provides the tools that are necessary to tailor the treatment to the patient.”

“While some parameters can be measured in the lab,” said Levy. “The mathematical model helps us understand the mechanisms that control the disease and show how to use this knowledge to our advantage.”

Levy and Lee are currently conducting further extensive study to expand on the results of this research, to prepare for possible experiments on animal models and conduct clinical trials.

The research was funded by the American Cancer Society, by the National Cancer Institute, and by the National Science Foundation.

Variables

One of the hardest things I’ve had to deal with since being diagnosed with CML is making peace with the unknown. I think my struggle is illustrated fairly well by the fact that I’ve felt suicidal a few times since July. The idea never lasted long and I was always able to push it away quickly upon realizing the irony of the sistuation: I’m afraid of dying, so I’m going to kill myself. How absurd. I know that plenty of people with chronic ailments “off” themselves, but usually it’s because they are in physical pain. I’m not in physical pain, so what is this all about? I’m guessing it’s about control. It’s about knowing (or falsely believing that you know) your future. The following are a few of the major question marks bouncing around in my skull.

#1 – How will I live my life

This one is the easiest because it is the only one in which I feel I have any control. However, I’ve been surprised at just how hard it has been to decide what I value most. I mean, don’t we think about this on a daily basis? Aren’t we constantly searching to understand what will make us happy? Yes, I think we are. But sitting down and saying, “If I have 2 years left, what do I want? If I have 5 years left, what do I want? If I have 10 years left, what do I want?” is much more difficult. Yet it has been the only way, I’ve found, to really prioritize. And still, I struggle daily to determine what I value and to what degree.

#2 – Will the rest of my life be painless

This is one of the things that disturbed me most about Dawn’s blog (as mentioned in my first post). She had become resistant to leukemia meds and had to receive a bone marrow transplant. She died soon after that. Bone marrow transplants are always dangerous to survival and only become more dangerous as you get older. The age of 32 is considered old by transplant standards. The pictures in Dawn’s blog show  a happy lively girl transform into an unrecognizable version of herself, sick and zombie-like. It seems ridiculous to me now, but I never actually considered that this could happen to me.

#3 – How long will I live

The medications that are currently used for CML are being touted as huge medical “miracles”. Gleevec is only about 6 years old and my med, Tasigna, is about 1 year old. Before these meds were on the market, a CML patient could expect to live roughly 5 years. With these medications a CML patient can expect to live…. nobody knows. This, of course, is the one question that I badgered my oncologist about most. Her answers were always vague, “we hope that you will live a long life” or “you will probably live much longer than you would have  before these medications were invented”. At first, this vagueness allowed me to believe that I would live to be an old eccentric woman with a house full of rabbits. When I happened upon Dawn’s blog, I realized that this is probably not the case. And that “much longer” is still undefined. For now, I am a guinea pig. I take some comfort in knowing that my experience will help future patients have some closure on this issue.

#4 – What is waiting for me on the other side

I’m not going to talk much about this one, for two reasons. One, I think this is a question that people deal with their whole lives, sick or healthy. Two, I’d like to go into more detail about my thoughts on this issue in a future post. I will say that having a chronic illness has given my brain permission to visit this question quite a bit more than I ever have before. I suppose there are the religious types who believe that they know, without a doubt what is on the other side and that it is a wonderful, utopian place. Unfortunately (and fortunately), I am not one of those people.

Introductions

I guess to start I should introduce myself. My name is Carmen. I’m 32 and have a long list of hobbies that include: animal documentaries, finding new music, cuddling my pet bunnies (or attempting to), hiking, camping, biking, reading science magazines, rollerskating, watching roller derby, traveling and hanging with my wonderful friends. I also have CML (Chronic Myelogenous Leukemia).

I was diagnosed in early July, 2008. I ended up in the ER with a (still) mysterious and unrelated stomach ache and was told that my white blood cell count was at around 65K when normal is somewhere in the neighborhood of 5K-10K. From there I was admitted to the hospital and the rest is history. The stomach ache was a godsend, since CML has little to no symptoms in the chronic (first) stage. Many people are diagnosed when they have moved onto the accelerated or blast phases, which makes treatment much more difficult.

My chromosomes 9 and 22 got stuck to each other like a couple of prepubescent kids making-out while wearing braces

For the first 4-5 months after my diagnoses I was doing a real bang-up job of living in denial. I recently stumbled upon a blog belonging to a girl named Dawn. She was my age and diagnosed with CML just a few months before me. She died last month. Needless to say, it rocked me pretty hard and.. well.. normal will never be the same. So after weighing the different options I had for keeping my sanity (therapy, support groups, drinking myself delirious, jumping into an active volcano), I decided that writing a blog of my own would probably be the best way to organize my thoughts, document my journey and ooze my bad emotional mojo onto others instead of holding it inside. Lucky you.

I thought today would be the perfect day to start considering that I have something to celebrate! A few weeks ago I had my 6 month follow-up, which included a bone marrow biopsy (if you haven’t tried it, I highly recommend one.. haha!). My oncologist called me tonight and explained that my results after 6 months were where they hope to have them by 1 year. The PCR test (scroll about halfway down) checks to see how many cells contain the chromosomal abnormality called the Philadelphia chromosome, which is responsible for the excess number of white blood cells found in a person with CML (or at least that is how I understand it). My test showed zero. She explained that there is another test that is still being processed that will give a more exact result, since a CML patient will always have a few retarded cells bumping around. But the gist of the matter is that almost all of my white blood cells are healthy, active little dudes. I never knew I could love the absence of something so much!

So apparently those chemical nanobots that I swallow twice a day are doing their job. Good job, little cancer ninjas! I’m on a study drug called Tasigna (Nilotinib).  Tasigna is already approved as a second line of defense, to be used when a person becomes resistant to the usual first-defense drug (Gleevec). The study allows me to skip Gleevec. The hope is to find a drug that the body won’t become resistant to, resulting in remission as long as you take the pill. My side-effects thus far have been hair loss (which almost drove me mad, but has since subsided), a rash on my arms and legs and minor liver damage (sadly I’ve had to say “good day, sir” to alcohol). Still, I feel quite lucky when I read about some of the folks on Gleevec who have had pretty severe fatigue and bone/joint pain. Aside from timing pills and using a blog to relax instead of a glass of wine, I feel pretty normal.

I don’t plan on being this long-winded every time. And I certainly do not plan on talking CML every post. I’m hoping that this blog will grant me fun and expression as much as it documents my battle with leukemia. With that said, I would like you to meet my favorite internet phenomenon, Oolong. Oolong is no longer with us. I doubt he died from something as boring as cancer. He probably died of cuteness. Which is really the way we all want to go. I’m sure he’s guarding the pearly gates with a cloudcake balanced upon his head.