Almost one week after my first chemo treatment, I'm feeling pretty good. My biggest issue right now is bone pain from the Neulasta shots that are given to help boost my white blood cell count. Neulasta is generally given 24-72 hours after each chemo infusion, as a subcutaneous shot. It makes its way to the bone marrow, and somehow helps it start producing white blood cells. I got my shot on Thursday, and Friday I started feeling pain in my low back and hips. I was pretty good over the weekend and this morning, but then it started - and intensified - this afternoon and evening. I took tylenol at 6:00, then moved to something stronger at 10. I'm still waiting for the pain reliever to kick in. The pain is weird - any time I make any slight move, I get intense waves of pain coinciding with my heart beat. I think it's better when I walk. Bending over or squatting is bad.
Thursday evening I was feeling pretty good and decided to try a spin class. The pain from the pneumothorax prevented me from being able to bend over the handlebars - I spent the whole class upright like I was riding a unicycle. I guess it's just walking for me for a while yet. I see the surgeon Friday, but I may call his office tomorrow to see what they say about ski practice.
Wednesday I got my hair cut. It looked pretty shocking at first, especially since it got extra curly - I thought I looked like a lamb. It's definitely a lot easier to style! I will post a picture if one can be taken of me where I keep my eyes open! I'm told it will be 2-3 weeks before my hair falls out, last night my scalp started feeling kind of itchy, turns out it could stay itchy until it starts hurting, that's when I know it's time to get out the shaver. I did buy a wig, I initially planned to have it just for work and travel functions, but I think I may end up wearing it more as it may be nice to have the sense of normalcy. I did find a website with some cute hats and headcoverings (headcovers.com) for women experiencing hairloss, and my good friend Ramona has offered to host a "Hat Party" for me. Stay tuned.
Other than the pneumothorax and the bone pain, side effects have been pretty minimal. No nausea, no major fatigue, maybe some heart burn and fluid retention. I think I would rather have the pain than the nausea. Tomorrow I'll have my fourth acupuncture session.
Monday, December 19, 2011
Monday, December 12, 2011
Surgery Update
Surgery went well, they took one lymph node. It was very clear this was the one sentinel node, based on how it took up the dye. I guess you can also use the dye to make a guess about cancer in the lymph node, and everything looked good for me. Of course, pathology is the final assessment - it will take a day or two to get those results.
The incision is small and doesn't hurt - I can't even tell where in my armpit it is. As for the port, that's starting to hurt a bit as the meds wear off.
I had the choice to not go under general anesthesia, so did that. I didn't notice any difference. (;
One of the final things they do prior to discharge is a chest x-ray to check the port placement. And turns out I have a pneumothorax - they punctured my lung with a needle. Which meant I couldn't go home. Off to the 7th floor, where I was admitted for overnight observation.
Picking up where I left off last night. The pneumothorax has not shrunk, and has maybe even gotten a bit bigger. My oxygen saturation is still high (upper 90s as opposed to 100 prior to surgery), but it's not very comfortable when I move around. The armpit incision also started hurting, but that was taken care of with a bit of vicodin.
Pneumothoraxes (pneumothori?) can resolve on their own, or they can insert a tube in your chest to suck out the air. I'm currently waiting for the surgical team to stop by during rounds to see if yesterday's surgeon thinks a tube is required. Also if it will impact chemo, which is scheduled to start at 8:30 this morning.
Already I'm behind on my meds - I was supposed to start a steroid yesterday to help prevent nausea. You take it the day before, the day of, and the day after each chemo infusion. I also haven't eaten anything for about 30 hours, first due to surgery prep, and now in case I need surgery again. My stomach is rumbling as I write.
Hopefully I will get some more news soon.
The incision is small and doesn't hurt - I can't even tell where in my armpit it is. As for the port, that's starting to hurt a bit as the meds wear off.
I had the choice to not go under general anesthesia, so did that. I didn't notice any difference. (;
One of the final things they do prior to discharge is a chest x-ray to check the port placement. And turns out I have a pneumothorax - they punctured my lung with a needle. Which meant I couldn't go home. Off to the 7th floor, where I was admitted for overnight observation.
Picking up where I left off last night. The pneumothorax has not shrunk, and has maybe even gotten a bit bigger. My oxygen saturation is still high (upper 90s as opposed to 100 prior to surgery), but it's not very comfortable when I move around. The armpit incision also started hurting, but that was taken care of with a bit of vicodin.
Pneumothoraxes (pneumothori?) can resolve on their own, or they can insert a tube in your chest to suck out the air. I'm currently waiting for the surgical team to stop by during rounds to see if yesterday's surgeon thinks a tube is required. Also if it will impact chemo, which is scheduled to start at 8:30 this morning.
Already I'm behind on my meds - I was supposed to start a steroid yesterday to help prevent nausea. You take it the day before, the day of, and the day after each chemo infusion. I also haven't eaten anything for about 30 hours, first due to surgery prep, and now in case I need surgery again. My stomach is rumbling as I write.
Hopefully I will get some more news soon.
PET Scan Results
Of course, the doctor called while I was taking the garbage out this morning, but in her message she said they DID NOT see any other signs of cancer in my body. She is supposed to call back later to go over the results, but I'm so glad she did say that about the no signs of cancer - RELIEF!
I am going in for surgery at 10:30 today, so will update my blog as more information becomes available and I have time to do the update. I will be under general anesthesia, but not admitted - I hope to be home by dinnertime.
I am going in for surgery at 10:30 today, so will update my blog as more information becomes available and I have time to do the update. I will be under general anesthesia, but not admitted - I hope to be home by dinnertime.
Sunday, December 11, 2011
A New Diagnosis
It's been a while since I posted, but not for lack of news.
On November 16th I learned that I now have breast cancer. I had started getting mammograms and breast MRIs a few years ago due to my increased risk after the total body irradiation. I received my annual reminder letter in August. As you may remember, at that time I was going through radiation for my arm. I made sure that I could have the testing while undergoing radiation, that my insurance (which had changed since the previous year) would cover it, and then I sat on it. I finally scheduled everything for November 3rd. Then, November 1st I found a lump.
An MRI, mammogram, ultrasound, and needle biopsy later, I received my third cancer diagnosis of 2011 (I had a basal cell carcinoma removed in September). The tumor is fairly small (1.3 cm - Stage 1), the lymph nodes looked normal on MRI (but a biopsy will be done to make sure they're clear), and the prognosis is good. However, the suggested treatment regimen includes chemo, followed by lumpectomy plus radiation or mastectomy.
There are multiple types of breast cancer, which vary in their responses to treatment, in their aggressiveness, and are actually thought to be different diseases. My type is referred to as triple negative, as it is negative for estrogen receptors, progesterone receptors, and Her2/neu. Triple negative breast cancer is more common among younger women, is considered to be aggressive, does not respond to hormonal therapy, but responds well to chemo.
Because much of my anxiety post-diagnosis was regarding the fact that this happened so quickly after the MPNST treatment, I was scheduled for a PET scan. A PET scan looks for possible cancer cells in the whole body - radioactive glucose is injected into the body prior to the scan. Because cancer cells have a higher metabolism than other cells, they take up more of the radioactive glucose and are visible on the scan. It's commonly done when metastasis is suspected, so not standard in my case if it was the breast cancer alone. The PET scan was Friday; I was hoping to receive the results yet that day but didn't hear anything. I'm trying to stay positive.
Chemotherapy will include four rounds of the drugs cytoxan and taxotere (CT), given three weeks apart. I am going to receive chemo prior to surgery to remove the tumor; this way, they can use MRIs to assess whether the tumor is responding the the chemo (chemo is given to kill any "micrometastases" that have broken away from the primary tumor - if the cells of the primary tumor respond, then these cells are likely responding as well. If the tumor is removed prior to chemo, you can't know this). If the tumor doesn't shrink, they can change my drugs. Best case scenario is that the tumor disappears. (I would still have surgery - a little metal clip was placed in the tumor during the needle biopsy, and the surgeon would remove this clip and the surrounding tissue.) I am starting chemo Tuesday, December 13th (yes, two days from now).
First, though, I am having surgery to place a port and to do a sentinel lymph node biopsy. A port is a little catheter placed under the skin underneath the collarbone that allows IV medicines to be given without the need for multiple needle sticks. It will look like a little button sticking out of my chest. For the lymph node biopsy, a blue tracer dye will be injected into the breast, and followed to the first (or first few) lymph node it reaches. This lymph node will be removed and examined for any signs of the cancer spreading. I think 1-3 lymph nodes are typically removed, a lot less than before the sentinel procedure was introduced and thereby reducing the risk of lymphedema. Surgery is tomorrow (Monday, December 12th).
The days since November 1st, when I found the lump, have flown by, while at the same time I freak out about six weeks passing between discovery and start of treatment. There were a number of people with whom I wanted to speak in person before updating this blog, which took a lot longer than I expected. Plus I've been spending a great deal of time reading, on the internet, on the phone, and at doctor appointments. Once again, I'm realizing that battling cancer can be a full time job! The last few days I've been trying to get stuff done so I can get it out of the way prior to chemo, when I don't know how I'll feel.
One of the things I've done is purchase a wig. I didn't think I'd wear a wig again, but then I started thinking about work travel, and meeting the staff at my study sites. I don't want baldness to be the first thing they notice about me. As for the rest of the time, I'm looking for cute hats, have some turbans that I bought back in 1989, and would use scarves if I can figure out how to tie them! After trying on wigs, though, I thought maybe I would wear the wig more than I first thought - it's nice for bestowing a sense of normalcy.
I also had my first acupuncture session. The possible side effects of chemo include fatigue, loss of appetite, edema, constipation, and diarrhea (sorry if that's TMI), and vary among individuals. A few things I've heard about getting through chemo: hydrate, hydrate, hydrate (one of the metabolites of cytoxan is toxic to the bladder, plus the more you drink the faster you get all those toxins out of your body), understand your side effects so you can be prepared for them the next round, exercise (which is the one thing scientifically shown to help combat fatigue), and consider acupuncture.
I will try to update this blog more frequently the next few days as I learn the results of the PET scan, the lymph node biopsy, and go through my first chemo infusion.
On November 16th I learned that I now have breast cancer. I had started getting mammograms and breast MRIs a few years ago due to my increased risk after the total body irradiation. I received my annual reminder letter in August. As you may remember, at that time I was going through radiation for my arm. I made sure that I could have the testing while undergoing radiation, that my insurance (which had changed since the previous year) would cover it, and then I sat on it. I finally scheduled everything for November 3rd. Then, November 1st I found a lump.
An MRI, mammogram, ultrasound, and needle biopsy later, I received my third cancer diagnosis of 2011 (I had a basal cell carcinoma removed in September). The tumor is fairly small (1.3 cm - Stage 1), the lymph nodes looked normal on MRI (but a biopsy will be done to make sure they're clear), and the prognosis is good. However, the suggested treatment regimen includes chemo, followed by lumpectomy plus radiation or mastectomy.
There are multiple types of breast cancer, which vary in their responses to treatment, in their aggressiveness, and are actually thought to be different diseases. My type is referred to as triple negative, as it is negative for estrogen receptors, progesterone receptors, and Her2/neu. Triple negative breast cancer is more common among younger women, is considered to be aggressive, does not respond to hormonal therapy, but responds well to chemo.
Because much of my anxiety post-diagnosis was regarding the fact that this happened so quickly after the MPNST treatment, I was scheduled for a PET scan. A PET scan looks for possible cancer cells in the whole body - radioactive glucose is injected into the body prior to the scan. Because cancer cells have a higher metabolism than other cells, they take up more of the radioactive glucose and are visible on the scan. It's commonly done when metastasis is suspected, so not standard in my case if it was the breast cancer alone. The PET scan was Friday; I was hoping to receive the results yet that day but didn't hear anything. I'm trying to stay positive.
Chemotherapy will include four rounds of the drugs cytoxan and taxotere (CT), given three weeks apart. I am going to receive chemo prior to surgery to remove the tumor; this way, they can use MRIs to assess whether the tumor is responding the the chemo (chemo is given to kill any "micrometastases" that have broken away from the primary tumor - if the cells of the primary tumor respond, then these cells are likely responding as well. If the tumor is removed prior to chemo, you can't know this). If the tumor doesn't shrink, they can change my drugs. Best case scenario is that the tumor disappears. (I would still have surgery - a little metal clip was placed in the tumor during the needle biopsy, and the surgeon would remove this clip and the surrounding tissue.) I am starting chemo Tuesday, December 13th (yes, two days from now).
First, though, I am having surgery to place a port and to do a sentinel lymph node biopsy. A port is a little catheter placed under the skin underneath the collarbone that allows IV medicines to be given without the need for multiple needle sticks. It will look like a little button sticking out of my chest. For the lymph node biopsy, a blue tracer dye will be injected into the breast, and followed to the first (or first few) lymph node it reaches. This lymph node will be removed and examined for any signs of the cancer spreading. I think 1-3 lymph nodes are typically removed, a lot less than before the sentinel procedure was introduced and thereby reducing the risk of lymphedema. Surgery is tomorrow (Monday, December 12th).
The days since November 1st, when I found the lump, have flown by, while at the same time I freak out about six weeks passing between discovery and start of treatment. There were a number of people with whom I wanted to speak in person before updating this blog, which took a lot longer than I expected. Plus I've been spending a great deal of time reading, on the internet, on the phone, and at doctor appointments. Once again, I'm realizing that battling cancer can be a full time job! The last few days I've been trying to get stuff done so I can get it out of the way prior to chemo, when I don't know how I'll feel.
One of the things I've done is purchase a wig. I didn't think I'd wear a wig again, but then I started thinking about work travel, and meeting the staff at my study sites. I don't want baldness to be the first thing they notice about me. As for the rest of the time, I'm looking for cute hats, have some turbans that I bought back in 1989, and would use scarves if I can figure out how to tie them! After trying on wigs, though, I thought maybe I would wear the wig more than I first thought - it's nice for bestowing a sense of normalcy.
I also had my first acupuncture session. The possible side effects of chemo include fatigue, loss of appetite, edema, constipation, and diarrhea (sorry if that's TMI), and vary among individuals. A few things I've heard about getting through chemo: hydrate, hydrate, hydrate (one of the metabolites of cytoxan is toxic to the bladder, plus the more you drink the faster you get all those toxins out of your body), understand your side effects so you can be prepared for them the next round, exercise (which is the one thing scientifically shown to help combat fatigue), and consider acupuncture.
I will try to update this blog more frequently the next few days as I learn the results of the PET scan, the lymph node biopsy, and go through my first chemo infusion.
Saturday, October 22, 2011
Is This It?
Since learning the good news about my MRI results, I've had some strange emotions - maybe a bit of guilt mixed with fear that the treatment wasn't aggressive enough. I feel like I got off too easy - ok, all those appointments and the talk of amputation back in May did suck, but I ended up with just a few surgeries and radiation. I didn't have chemo, I didn't lose my hair, I didn't lose my arm. My arm's here - I'm here. Minus some scarring, a hand that doesn't work quite right (I've realized recently that buttons are difficult as well), and an itchy arm, I'm not much the worse for wear. There's this feeling that I didn't do my time.
This might sound crazy to many people - why not just be happy and rejoice that I'm well, and that I didn't have to go through worse treatments to get here? I think to understand, you have to know a bit about leukemia and leukemia treatment a bit (sorry if I'm neglecting other cancers and their treatment, I just don't know them as well).
Chemotherapy often involves drugs that are extremely toxic to normal, healthy cells in addition to the cancer cells. Because they target fast-growing cells, the drugs especially affect the lining of your stomach and your hair cells (which is why you lose your hair). When I received my first dose of chemo back in 1989, the nurse who came in to deliver it wore a yellow haz-mat suit (ok, I'm sure that's not what the medical establishment calls it). It took just moments for the nausea to start - and I don't think it stopped until the chemo stopped a week later. After that came two weeks of the chemo effects - losing my hair, low blood counts, fever, etc. I lost 12 pounds in three weeks.
The idea for the bone marrow transplant was born out of the frustration that higher doses of chemo couldn't be given to kill all the leukemia cells, as they would kill all the bone marrow cells and be fatal. If some of the bone marrow could be extracted, not exposed to chemo, then given back to the patient after the final chemo dose, these otherwise fatal doses could be administered.
I was happy to have the transplant. My alternative was "maintenance chemo:" pills and a weekly shot for three years, accompanied by annual doses of stronger IV chemo. The weekly shots made me sick, and the annual chemo would make me lose my hair each time. I was entering my senior year of high school, and I couldn't imagine the next three years of college with annual hair loss and spending Friday evenings throwing up, recovering the rest of the weekend. I would rather get the higher doses, and have it all done in a matter of weeks. And the transplant worked!
But you can maybe now imagine why I associate cancer treatment with horrific experience. While I really sailed through chemo and transplant - remission after one round of chemo, no relapses, no life-threatening infections - and have forgotten much of it thanks to drugs and the healing power of the mind, it really was awful and not something I'd like to repeat. It also doesn't help that in the years since my transplant and ensuing cure, I've learned of many people who weren't as fortunate as I was. To me, the responsibility of cancer survivorship is to remember that and to live each day mindful of my good fortune (some days I do better than others).
The cancer survivor club - a club you don't really want to join (unless you receive a diagnosis, that is): some of us got here through experiences like mine, others have cancers for which they don't receive treatment and are just monitored. More recently, drugs like Gleevec and Sprycel have made it possible to join the club by not going through the hazing rituals of toxic therapy. While I'm very happy for these medical advances and hope that all cancers will eventually be treated by drugs with minimal side effects, I do feel a twinge of resentment that we all hold the same membership cards - as if I, by virtue of going through full-strength chemo, am different from survivors who received diagnoses just as traumatic and life-changing.
While perhaps this mostly just sounds really f-ed up, I write about these feelings in order to understand myself, to tell myself that it doesn't matter how we all got in the club, what's important is that we're in it. That I didn't have to go through chemo, lose my hair or a limb to be a survivor - that I can lose my guilt and my fear and keep all the joy and the gratitude.
This might sound crazy to many people - why not just be happy and rejoice that I'm well, and that I didn't have to go through worse treatments to get here? I think to understand, you have to know a bit about leukemia and leukemia treatment a bit (sorry if I'm neglecting other cancers and their treatment, I just don't know them as well).
Chemotherapy often involves drugs that are extremely toxic to normal, healthy cells in addition to the cancer cells. Because they target fast-growing cells, the drugs especially affect the lining of your stomach and your hair cells (which is why you lose your hair). When I received my first dose of chemo back in 1989, the nurse who came in to deliver it wore a yellow haz-mat suit (ok, I'm sure that's not what the medical establishment calls it). It took just moments for the nausea to start - and I don't think it stopped until the chemo stopped a week later. After that came two weeks of the chemo effects - losing my hair, low blood counts, fever, etc. I lost 12 pounds in three weeks.
The idea for the bone marrow transplant was born out of the frustration that higher doses of chemo couldn't be given to kill all the leukemia cells, as they would kill all the bone marrow cells and be fatal. If some of the bone marrow could be extracted, not exposed to chemo, then given back to the patient after the final chemo dose, these otherwise fatal doses could be administered.
I was happy to have the transplant. My alternative was "maintenance chemo:" pills and a weekly shot for three years, accompanied by annual doses of stronger IV chemo. The weekly shots made me sick, and the annual chemo would make me lose my hair each time. I was entering my senior year of high school, and I couldn't imagine the next three years of college with annual hair loss and spending Friday evenings throwing up, recovering the rest of the weekend. I would rather get the higher doses, and have it all done in a matter of weeks. And the transplant worked!
But you can maybe now imagine why I associate cancer treatment with horrific experience. While I really sailed through chemo and transplant - remission after one round of chemo, no relapses, no life-threatening infections - and have forgotten much of it thanks to drugs and the healing power of the mind, it really was awful and not something I'd like to repeat. It also doesn't help that in the years since my transplant and ensuing cure, I've learned of many people who weren't as fortunate as I was. To me, the responsibility of cancer survivorship is to remember that and to live each day mindful of my good fortune (some days I do better than others).
The cancer survivor club - a club you don't really want to join (unless you receive a diagnosis, that is): some of us got here through experiences like mine, others have cancers for which they don't receive treatment and are just monitored. More recently, drugs like Gleevec and Sprycel have made it possible to join the club by not going through the hazing rituals of toxic therapy. While I'm very happy for these medical advances and hope that all cancers will eventually be treated by drugs with minimal side effects, I do feel a twinge of resentment that we all hold the same membership cards - as if I, by virtue of going through full-strength chemo, am different from survivors who received diagnoses just as traumatic and life-changing.
While perhaps this mostly just sounds really f-ed up, I write about these feelings in order to understand myself, to tell myself that it doesn't matter how we all got in the club, what's important is that we're in it. That I didn't have to go through chemo, lose my hair or a limb to be a survivor - that I can lose my guilt and my fear and keep all the joy and the gratitude.
Tuesday, October 18, 2011
Team in Training!
After my diagnosis I received an outpouring of love and support from all my friends and family, including my friends from Team in Training (TNT) and The Leukemia & Lymphoma Society. In fact, the Minnesota Chapter of TNT has created their first ever cross-country ski team and has named me as their honored teammate.
So of course, I’m signed up as a participant as well! I will be training for the 25k City of Lakes Loppet, here in Minneapolis on February 5, 2012 (www.cityoflakesloppet.com). I do not know how to ski. I’m sort of a klutz and I don’t really like being out in the cold. But I live in Minnesota, and for the past few years I’ve been saying that I should get a hobby that gets me out and enjoying this winter wonderland. And it’s the TNT inaugural ski team and I’m ready to start giving back – how could I not sign up?
If you need more, here are a few more reasons I’ll be out there, freezing my you-know-what and hitting all my loved ones up for donations:
1) During my appointments, I saw so many other cancer patients less fortunate than me. For one appointment, we sat in the waiting room with pediatric cancer patients and their parents. They were bald, in wheelchairs, wearing masks, or any combination of those. Later, when I was going to radiation, I would often run before or after my appointments. Sometimes I would bike to the University. I would walk in to the waiting room in my exercise clothes, holding my bike helmet, while around me were people in wheelchairs, attached to IV pumps, wearing masks, holding emesis basins. I participate in honor of all these people.
2) There is a high likelihood that the MPNST was caused by the radiation I had for the bone marrow transplant I had in 1989 to treat leukemia. While I’m thankful for the 22 years of almost perfect health the BMT gave me, I don’t want others to have to go through a second diagnosis. I train in order to find a cure that doesn’t cause other problems down the road – and, hey, how about one that doesn’t make one sick while we’re at it?
3) While the money raised by TNT goes to fund research for a cure for leukemia and lymphoma, these treatments are often used for other cancers down the line. For example, Gleevec, a drug developed by Dr. Brian Druker to treat chronic myeloid leukemia (CML), is now being used to treat certain types of breast cancer and even a type of sarcoma, gastrointestinal stromal tumor (GIST). I recently learned that this is because leukemia and lymphoma cells are “free” in the blood, and therefore “countable” – it’s much easier to measure the effect a drug has on the cancer cells.
4) That being said, because blood cancers are not as prevalent as other diseases, it may be difficult to find the funding necessary for drug development. In fact, when Dr. Druker was developing Gleevec he encountered difficulty obtaining drug company support - the drug wasn’t a high priority since only 5000 people are diagnosed with CML each year, and proving that it was both safe and effective would require a substantial investment. LLS started supporting his research in 1995, clinical trials started in 1998, and in 2001 the FDA approved Gleevec to treat CML. So I’m helping to fund research for diseases that might not otherwise receive attention – and that, in turn, could help all cancers.
5) A cancer diagnosis is tough. This was my second time around and I work in medical research, and it was still overwhelming. LLS supports blood cancer patients not only by funding research, but by informing them, connecting them with the latest therapy options and blood cancer clinical trials, and also by providing financial support. As for me, I received love and support from the staff and from all the TNT participants whom I’ve met over the last few years. The people of TNT are amazing – of course I’d want to spend another season with them, training together in order to save lives!
I have pledged to raise $2000 for The Leukemia & Lymphoma Society - please consider making a donation. All donations are 100% tax deductible and approximately 76% of the funds raised will go directly to research. You can donate online on my Web site: pages.teamintraining.org/mn/cityofla12/celias
If you'd prefer to mail in a donation, let me know and I'll send you my mailing address.
GO TEAM!
So of course, I’m signed up as a participant as well! I will be training for the 25k City of Lakes Loppet, here in Minneapolis on February 5, 2012 (www.cityoflakesloppet.com). I do not know how to ski. I’m sort of a klutz and I don’t really like being out in the cold. But I live in Minnesota, and for the past few years I’ve been saying that I should get a hobby that gets me out and enjoying this winter wonderland. And it’s the TNT inaugural ski team and I’m ready to start giving back – how could I not sign up?
If you need more, here are a few more reasons I’ll be out there, freezing my you-know-what and hitting all my loved ones up for donations:
1) During my appointments, I saw so many other cancer patients less fortunate than me. For one appointment, we sat in the waiting room with pediatric cancer patients and their parents. They were bald, in wheelchairs, wearing masks, or any combination of those. Later, when I was going to radiation, I would often run before or after my appointments. Sometimes I would bike to the University. I would walk in to the waiting room in my exercise clothes, holding my bike helmet, while around me were people in wheelchairs, attached to IV pumps, wearing masks, holding emesis basins. I participate in honor of all these people.
2) There is a high likelihood that the MPNST was caused by the radiation I had for the bone marrow transplant I had in 1989 to treat leukemia. While I’m thankful for the 22 years of almost perfect health the BMT gave me, I don’t want others to have to go through a second diagnosis. I train in order to find a cure that doesn’t cause other problems down the road – and, hey, how about one that doesn’t make one sick while we’re at it?
3) While the money raised by TNT goes to fund research for a cure for leukemia and lymphoma, these treatments are often used for other cancers down the line. For example, Gleevec, a drug developed by Dr. Brian Druker to treat chronic myeloid leukemia (CML), is now being used to treat certain types of breast cancer and even a type of sarcoma, gastrointestinal stromal tumor (GIST). I recently learned that this is because leukemia and lymphoma cells are “free” in the blood, and therefore “countable” – it’s much easier to measure the effect a drug has on the cancer cells.
4) That being said, because blood cancers are not as prevalent as other diseases, it may be difficult to find the funding necessary for drug development. In fact, when Dr. Druker was developing Gleevec he encountered difficulty obtaining drug company support - the drug wasn’t a high priority since only 5000 people are diagnosed with CML each year, and proving that it was both safe and effective would require a substantial investment. LLS started supporting his research in 1995, clinical trials started in 1998, and in 2001 the FDA approved Gleevec to treat CML. So I’m helping to fund research for diseases that might not otherwise receive attention – and that, in turn, could help all cancers.
5) A cancer diagnosis is tough. This was my second time around and I work in medical research, and it was still overwhelming. LLS supports blood cancer patients not only by funding research, but by informing them, connecting them with the latest therapy options and blood cancer clinical trials, and also by providing financial support. As for me, I received love and support from the staff and from all the TNT participants whom I’ve met over the last few years. The people of TNT are amazing – of course I’d want to spend another season with them, training together in order to save lives!
I have pledged to raise $2000 for The Leukemia & Lymphoma Society - please consider making a donation. All donations are 100% tax deductible and approximately 76% of the funds raised will go directly to research. You can donate online on my Web site: pages.teamintraining.org/mn/cityofla12/celias
If you'd prefer to mail in a donation, let me know and I'll send you my mailing address.
GO TEAM!
Monday, October 17, 2011
The Emperor of All Maladies
According to Scott, I have too many books about cancer. Which is probably true. I think I own five, and have checked another ten or so out from the library at various times the last few months.
The Emperor of All Maladies, though, is different. Whereas the other books are all about how lifestyle and diet affects cancer, this one is a history of cancer. And I love books about medical history - my bookshelves are lined with books about the 1918 influenza pandemic, the natural history of the mosquito and mosquito-borne diseases, another about how medicine's impact on history (e.g., the role of typhus in Napoleon's unsuccessful Russian campaign), The Coming Plague, you get the idea. I learned about the book from another sarcoma patient, so the timing was related to my diagnosis, but I would have read this book at some point, no matter what my own situation.
The book is written by an oncologist, Dr. Siddhartha Mukherjee, and grew out of a question asked of him by a patient regarding what exactly she was battling. Its 500 pages go through the history of cancer - from ancient texts and Galen's "black bile" theory through the rise and decline of the super radical mastectomy surgery, the identification of the connection between tobacco and lung cancer, and the ensuing battle to regulate big tobacco, the "discovery" of chemotherapy and the chemo trials of the 60s and 70s, the rise of palliative care, the identification of oncogenes and tumor suppressor genes, and finally, the rise of targeted therapies such as Gleevec, the revolutionary drug that turned chronic myeloid leukemia from a deadly, chemo-resistant disease, to a chronic disease that is managed by a single pill.
The book does express cautious optimism, but also warns against arrogance and complacency. I loved the way he wrote, and found it pleasant to read this 500 page, nonfiction history book. Others must have found it compelling, interesting, and educational as well - it won the 2011 Pulitzer Prize in general nonfiction.
Not surprisingly, MPNST is not mentioned in the book. Sarcomas - especially GIST, which is now treated with Gleevec - do get a few mentions. So while it was close to home, it wasn't too close. (:
A worse choice was the movie 50/50, which I saw last week. I can't tell you if it was good or not - I maybe should have waited to see that one, at least until after the MRI results were in! Instead, I saw it on the evening before my appointment to learn about the results. I'm a crier in any movie, even, apparently, one starring Seth Rogen. The movie was billed as a "comedy cancer," with which I have no problem; in fact I like the idea. I just didn't find it very funny, which I think was due to the timing and my personal circumstances. The main character even had a cancer similar to mine, as far as I can tell - neurofibroma (benign tumor rising out of nerve sheath cells) sarcoma (tumor of the connective tissue) schwannoma (also relates to the cell type of the tumor - Schwann Cells. My tumor was called a schwannoma until they decided it was malignant, at which point they called it MPNST (I guess "malignant schwannoma" wasn't long enough)). Tumor location was different, of course.
My next movie will be the one about the birdwatchers (and yes, I've read the book that it's based on).
The Emperor of All Maladies, though, is different. Whereas the other books are all about how lifestyle and diet affects cancer, this one is a history of cancer. And I love books about medical history - my bookshelves are lined with books about the 1918 influenza pandemic, the natural history of the mosquito and mosquito-borne diseases, another about how medicine's impact on history (e.g., the role of typhus in Napoleon's unsuccessful Russian campaign), The Coming Plague, you get the idea. I learned about the book from another sarcoma patient, so the timing was related to my diagnosis, but I would have read this book at some point, no matter what my own situation.
The book is written by an oncologist, Dr. Siddhartha Mukherjee, and grew out of a question asked of him by a patient regarding what exactly she was battling. Its 500 pages go through the history of cancer - from ancient texts and Galen's "black bile" theory through the rise and decline of the super radical mastectomy surgery, the identification of the connection between tobacco and lung cancer, and the ensuing battle to regulate big tobacco, the "discovery" of chemotherapy and the chemo trials of the 60s and 70s, the rise of palliative care, the identification of oncogenes and tumor suppressor genes, and finally, the rise of targeted therapies such as Gleevec, the revolutionary drug that turned chronic myeloid leukemia from a deadly, chemo-resistant disease, to a chronic disease that is managed by a single pill.
The book does express cautious optimism, but also warns against arrogance and complacency. I loved the way he wrote, and found it pleasant to read this 500 page, nonfiction history book. Others must have found it compelling, interesting, and educational as well - it won the 2011 Pulitzer Prize in general nonfiction.
Not surprisingly, MPNST is not mentioned in the book. Sarcomas - especially GIST, which is now treated with Gleevec - do get a few mentions. So while it was close to home, it wasn't too close. (:
A worse choice was the movie 50/50, which I saw last week. I can't tell you if it was good or not - I maybe should have waited to see that one, at least until after the MRI results were in! Instead, I saw it on the evening before my appointment to learn about the results. I'm a crier in any movie, even, apparently, one starring Seth Rogen. The movie was billed as a "comedy cancer," with which I have no problem; in fact I like the idea. I just didn't find it very funny, which I think was due to the timing and my personal circumstances. The main character even had a cancer similar to mine, as far as I can tell - neurofibroma (benign tumor rising out of nerve sheath cells) sarcoma (tumor of the connective tissue) schwannoma (also relates to the cell type of the tumor - Schwann Cells. My tumor was called a schwannoma until they decided it was malignant, at which point they called it MPNST (I guess "malignant schwannoma" wasn't long enough)). Tumor location was different, of course.
My next movie will be the one about the birdwatchers (and yes, I've read the book that it's based on).
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