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.
Saturday, October 22, 2011
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).
Friday, October 14, 2011
Cancer Free!
Saw Dr. Ogilvie this morning, and got great news. The first thing he said was that he was very happy with what he saw on the MRI - which was no sign of cancer!
The nurse who brought us into the exam room brought up the MRI images before she left. I saw some big white blob and mentioned it to Scott, who just said "Wait for the doctor." Turns out it was my stomach (from the CT scan I'd had a few weeks ago). (>8
Dr. Ogilvie went through the MRI images with us, and pointed out where the tumor had been, the inflammation from the surgery (still!), and how he determined that there wasn't any (macroscopic) tumor present. We also discussed my hand strength and sensation (or lack of) - it could be as much as a year out of radiation for those to start returning, getting drugs for my next MRI, and full travel clearance for work.
Next step: Arm MRI and chest CT scan in January. I'll have those every 3-4 months for the next two years, then less frequently for a few more years after that. Hopefully all quite boring!
The nurse who brought us into the exam room brought up the MRI images before she left. I saw some big white blob and mentioned it to Scott, who just said "Wait for the doctor." Turns out it was my stomach (from the CT scan I'd had a few weeks ago). (>8
Dr. Ogilvie went through the MRI images with us, and pointed out where the tumor had been, the inflammation from the surgery (still!), and how he determined that there wasn't any (macroscopic) tumor present. We also discussed my hand strength and sensation (or lack of) - it could be as much as a year out of radiation for those to start returning, getting drugs for my next MRI, and full travel clearance for work.
Next step: Arm MRI and chest CT scan in January. I'll have those every 3-4 months for the next two years, then less frequently for a few more years after that. Hopefully all quite boring!
Thursday, October 13, 2011
The MRI
This week I finally deemed that enough time had passed and my arm had healed sufficiently to schedule the MRI that would tell us what my status is. I had the MRI last night.
I've never had anything but an arm MRI, so I don't know what they're like for other body parts, but for arms they suck. I was told last night that arms are one of the toughest areas to scan. I was scheduled for both a forearm and an upper arm scan, and it takes a long time because they're basically scanning microscopic cross-sections of my arm, from the wrist all the way up.
I'm usually pretty laid back about what's going on with me, but I will say that I've had a lot of medical procedures done. A lot - bone marrow tests (I can't even tell you how many, but I'm sure it's more than 20. One is enough to freak you out), two bone marrow harvests, chemo (hey, folks that are hesitant to donate bone marrow because you've heard it hurts I've done it TWICE (the first time they didn't get enough neutrophils because I hadn't been off maintenance chemo long enough) and chemo's worse), a spinal tap...you get the idea. So last night, I was high maintenance. I squeezed the little ball three times and had to come out of the machine because I was freaking out (and I had to pee - note to self: do not drink smoothies on your way to future MRIs). My back was spasming, I was getting heartburn, my breathing was getting confused - I didn't know if I needed to inhale or exhale (I'm pretty sure that's what they call hyperventilating), and I was getting dizzy.
Luckily, I had a very sympathetic MRI technician (she kept calling me "Darling" - and she was a tattoed 25-year old). Finally, when we were almost done, the machine stopped working. She said she'd gotten most everything anyway, and didn't think we needed to scan the very upper arm (the tumor only went a couple inches above the elbow). But when I left, I felt like I'd been violated. And it didn't even involve a needle or a scalpel (oh, wait, there was a butterfly needle and contrast involved). I went to the co-op, bought flower healing remedy, tapioca pudding (they were out of chocolate), and went home and drank holy basil tea (it's calming), ate the pudding (hey, it's better than drinking vodka, another option I'd been considering), and watched this season's three episodes of Glee all while curled up in a ball.
The worst thing is that I'll need MRIs (along with lung CTs) regularly for the next few years. When I see the doctor tomorrow (more on that in the next paragraph), I'm going to see if they can give me some anti-anxiety meds. Ativan, valium, whatever, I'll take it (and I'm usually the one who doesn't take pain meds!). And I'll take an antacid. And no smoothies beforehand.
I see Dr. Ogilvie at 8:30 tomorrow morning to discuss the results. I've realized I discuss and plan life around them not seeing any cancer in the MRI - what else can you do? I'm not going to plan my life around this disease. That's part of that whole kicking cancer's butt thing - not letting it affect my lfe (at least not in any negative ways). But...not until the scan was done have I really thought about the what if? What if it does show residual tumor? See? There I go.
Luckily my friend Pat is taking me to a movie tonight (50/50 - a movie about cancer, wouldn't you know - it was my choice) so I won't have too much time for my mind to wander. Please keep your fingers crossed, keep me in your thoughts and prayers (now that's a weird and demanding to ask for myself!), send good vibes and energy, whatever your personal beliefs have you do. Thanks for hearing out my rants!
I've never had anything but an arm MRI, so I don't know what they're like for other body parts, but for arms they suck. I was told last night that arms are one of the toughest areas to scan. I was scheduled for both a forearm and an upper arm scan, and it takes a long time because they're basically scanning microscopic cross-sections of my arm, from the wrist all the way up.
I'm usually pretty laid back about what's going on with me, but I will say that I've had a lot of medical procedures done. A lot - bone marrow tests (I can't even tell you how many, but I'm sure it's more than 20. One is enough to freak you out), two bone marrow harvests, chemo (hey, folks that are hesitant to donate bone marrow because you've heard it hurts I've done it TWICE (the first time they didn't get enough neutrophils because I hadn't been off maintenance chemo long enough) and chemo's worse), a spinal tap...you get the idea. So last night, I was high maintenance. I squeezed the little ball three times and had to come out of the machine because I was freaking out (and I had to pee - note to self: do not drink smoothies on your way to future MRIs). My back was spasming, I was getting heartburn, my breathing was getting confused - I didn't know if I needed to inhale or exhale (I'm pretty sure that's what they call hyperventilating), and I was getting dizzy.
Luckily, I had a very sympathetic MRI technician (she kept calling me "Darling" - and she was a tattoed 25-year old). Finally, when we were almost done, the machine stopped working. She said she'd gotten most everything anyway, and didn't think we needed to scan the very upper arm (the tumor only went a couple inches above the elbow). But when I left, I felt like I'd been violated. And it didn't even involve a needle or a scalpel (oh, wait, there was a butterfly needle and contrast involved). I went to the co-op, bought flower healing remedy, tapioca pudding (they were out of chocolate), and went home and drank holy basil tea (it's calming), ate the pudding (hey, it's better than drinking vodka, another option I'd been considering), and watched this season's three episodes of Glee all while curled up in a ball.
The worst thing is that I'll need MRIs (along with lung CTs) regularly for the next few years. When I see the doctor tomorrow (more on that in the next paragraph), I'm going to see if they can give me some anti-anxiety meds. Ativan, valium, whatever, I'll take it (and I'm usually the one who doesn't take pain meds!). And I'll take an antacid. And no smoothies beforehand.
I see Dr. Ogilvie at 8:30 tomorrow morning to discuss the results. I've realized I discuss and plan life around them not seeing any cancer in the MRI - what else can you do? I'm not going to plan my life around this disease. That's part of that whole kicking cancer's butt thing - not letting it affect my lfe (at least not in any negative ways). But...not until the scan was done have I really thought about the what if? What if it does show residual tumor? See? There I go.
Luckily my friend Pat is taking me to a movie tonight (50/50 - a movie about cancer, wouldn't you know - it was my choice) so I won't have too much time for my mind to wander. Please keep your fingers crossed, keep me in your thoughts and prayers (now that's a weird and demanding to ask for myself!), send good vibes and energy, whatever your personal beliefs have you do. Thanks for hearing out my rants!
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