Was it last month that I threatened to write a book? I began by trying to organize and categorize essays I've already written. This did not go well, since I quickly realized I had material for many books, not just one. Perhaps when I am old and grey and nodding by the fire I will dictate my memoir, Strange Journeys, to my grandchildren. This will include the different phases of my life that seem so disparate but may someday reveal a linear dimension. For now, I will write about leukemia. God, I hate that word.
Now that I've been a guinea pig for nearly four years, I thought it time to record my journey through Cancerland so that others--current and future patients, caregivers, family and friends--can get an idea of the day-to-day challenges of the disease and its treatment. Not that all paths will follow mine, but thematically there will be much overlap. I'm hoping this will be a helpful guide to others walking in these crappy shoes.
Yesterday, I finally started writing the first chapters. Some of it I had already been written so I spent a lot of time weaving the new and the old together. I find this much more difficult than writing from scratch but since memory is fickle, it's beneficial to have journals and notes and writing exercises and blog posts to refer to and borrow from.
Writing about my illness is cathartic in many ways. This is what happened. This is how I coped. This is how I fought back. All very courageous and uplifting. The downside is having to relive the darker memories and try to make sense of them. Anxiety sneaks up from behind and screams: Boo! There are drugs for that.
I will be in need of a good editor, not to mention a publisher, but for now I'm going to fasten my seat belt, let the words flow and see where they take me.
Thursday, December 31, 2009
Saturday, December 26, 2009
Ups and Downs
The problem with being a transplant patient is you're never sure if a sniffle is the first sign of pneumonia, or whether stomach pain is graft-versus-host disease or just something you ate. I spent much of the week feeling blah, and not sure how much I should worry about it.
Any symptom is a sign and it's always bad. You blow your nose and are startled by a bit of blood on the tissue. Oh no, my platelets are low, so low I might be relapsing. If you were a rational person you'd chalk it up to the season's low humidity. You forget what it's like to be a normal healthy person who gets colds, aches, pains and other minor conditions that don't portent life-threatening diseases.
I spent all Thursday night moaning and groaning, getting up in the icy cold, chugging Mylanta. At one point I even vomited. That hasn't happened in a long time and was all very reminiscent of how I was feeling in the fall. At that time, my doctor said it might be gut gvh and we should keep an eye on it. The symptoms disappeared one day, and that was the last mention of gvh. When they came back the other night, I was miserable. By the way, a little gvh is good for you because it means your donor is actively hunting alien cells such as residual leukemia. Some of your good cells also suffer but there are drugs for that. A lot of gvh is bad, even deadly. The trick is to recognize it and treat it in time. It's a delicate balancing act.
Twenty four hours after my guts started churning, I began to feel better. I guess I had a run-of-the-mill virus after all. Today I feel fine, except for being a little tired. I'll take it.
Any symptom is a sign and it's always bad. You blow your nose and are startled by a bit of blood on the tissue. Oh no, my platelets are low, so low I might be relapsing. If you were a rational person you'd chalk it up to the season's low humidity. You forget what it's like to be a normal healthy person who gets colds, aches, pains and other minor conditions that don't portent life-threatening diseases.
I spent all Thursday night moaning and groaning, getting up in the icy cold, chugging Mylanta. At one point I even vomited. That hasn't happened in a long time and was all very reminiscent of how I was feeling in the fall. At that time, my doctor said it might be gut gvh and we should keep an eye on it. The symptoms disappeared one day, and that was the last mention of gvh. When they came back the other night, I was miserable. By the way, a little gvh is good for you because it means your donor is actively hunting alien cells such as residual leukemia. Some of your good cells also suffer but there are drugs for that. A lot of gvh is bad, even deadly. The trick is to recognize it and treat it in time. It's a delicate balancing act.
Twenty four hours after my guts started churning, I began to feel better. I guess I had a run-of-the-mill virus after all. Today I feel fine, except for being a little tired. I'll take it.
Friday, December 18, 2009
Weekly Reader
I'm taking a page from my friend Ann's blog by recapping the past week's events. There weren't any, which is how we like it around here.
After receiving a transfusion last week, most of my annoying but unimportant symptoms slowly disappeared. Night hunger continues to plague me but I just send Marty down to get me a light snack. I walked 2 miles in the blustery cold the other day, cursing myself as I plodded on. But I was so glad I'd done it after the ordeal was over. I'm getting stronger every day. Being cold all the time, indoors and out, is no fun, but I wear huge sweaters and always sit in front of a heater. I haven't been outside since Wednesday and don't plan on going out until the temperature rises above 30. Unless, of course, it snows, in which case I'll at least take a trip to the mailbox.
Marty is picking up Mark today in NYC and they're driving down to the Phillie area for my niece's baby-naming ceremony. That means I will be free to commit numerous transgressions while he's away. In theory, Mariel (who arrived home yesterday) and Harry are my caretakers, but if I can't outsmart a high school and college senior, I've completely lost my touch.
Am I rambling?
I fill my time with knitting many scarves (four down, two in the works), reading an inscrutable novel (2666) and watching Wolf Blitzer in the Situation Room. Yesterday, I sat down and wrestled with the CSS Profile which I have to fill out for Harry. It's a financial aid form that I've filled out many times in the past, but usually sometime in February when I have more tax data. 2009 was a pretty pathetic year for us in more ways than one. Having to record the misery in cold hard numbers almost made me weep. Still, we are luckier than many of our fellow Americans who are losing their homes and health insurance.
Today's agenda includes seeing Marty off, knitting, reading, eating and watching a little tube. Doesn't sound half bad, does it?
After receiving a transfusion last week, most of my annoying but unimportant symptoms slowly disappeared. Night hunger continues to plague me but I just send Marty down to get me a light snack. I walked 2 miles in the blustery cold the other day, cursing myself as I plodded on. But I was so glad I'd done it after the ordeal was over. I'm getting stronger every day. Being cold all the time, indoors and out, is no fun, but I wear huge sweaters and always sit in front of a heater. I haven't been outside since Wednesday and don't plan on going out until the temperature rises above 30. Unless, of course, it snows, in which case I'll at least take a trip to the mailbox.
Marty is picking up Mark today in NYC and they're driving down to the Phillie area for my niece's baby-naming ceremony. That means I will be free to commit numerous transgressions while he's away. In theory, Mariel (who arrived home yesterday) and Harry are my caretakers, but if I can't outsmart a high school and college senior, I've completely lost my touch.
Am I rambling?
I fill my time with knitting many scarves (four down, two in the works), reading an inscrutable novel (2666) and watching Wolf Blitzer in the Situation Room. Yesterday, I sat down and wrestled with the CSS Profile which I have to fill out for Harry. It's a financial aid form that I've filled out many times in the past, but usually sometime in February when I have more tax data. 2009 was a pretty pathetic year for us in more ways than one. Having to record the misery in cold hard numbers almost made me weep. Still, we are luckier than many of our fellow Americans who are losing their homes and health insurance.
Today's agenda includes seeing Marty off, knitting, reading, eating and watching a little tube. Doesn't sound half bad, does it?
Friday, December 11, 2009
Type A
It's finally happened: my blood type now matches my personality type, A. You've figured that out by now. Sure, living for six years in tropical paradise knocked me down to a B, but I lurched back into the A range within a year or so of returning to the US. Nothing is of course immutable, but I was pretty sure about blood type. Now, I match my kids. Can you imagine what living here is like?
On Wednesday, we drove up to Boston in a snowstorm. It took us three hours to get there, double what it usually takes. We didn't see my doctor until 1pm, and when he told me I needed red blood cells, I figured we'd be at the clinic until 7. He gave me the option of having a transfusion in Rhode Island, which seemed more reasonable. We didn't get back to our house until 4 as it was. Now I know what shortness of breath feels like.
Bright and early on Thursday, we headed up to Memorial Hospital where my local oncologist is head of the Cancer Center. They crossed and typed my blood, and Marty and I went out for breakfast since it takes a couple of hours to get the blood ready. We went to a nearby diner, which was quite a Rhode Island experience. It deserves its own post, so you'll have to wait for the story.
Back at the hospital's infusion lab, I was told my blood type had switched over from O to A. My blood arrived, and I spent the next 5 hours knitting, dozing, reading, watching my soaps and chatting with Marty. Tanked up, we left around 4, another long day devoted to transplant fallout.
I'm happy to report that the vampire in me is fully sated. I'm re-energized, breathing normally, and can now cultivate my A personality to its fullest and sickest.
On Wednesday, we drove up to Boston in a snowstorm. It took us three hours to get there, double what it usually takes. We didn't see my doctor until 1pm, and when he told me I needed red blood cells, I figured we'd be at the clinic until 7. He gave me the option of having a transfusion in Rhode Island, which seemed more reasonable. We didn't get back to our house until 4 as it was. Now I know what shortness of breath feels like.
Bright and early on Thursday, we headed up to Memorial Hospital where my local oncologist is head of the Cancer Center. They crossed and typed my blood, and Marty and I went out for breakfast since it takes a couple of hours to get the blood ready. We went to a nearby diner, which was quite a Rhode Island experience. It deserves its own post, so you'll have to wait for the story.
Back at the hospital's infusion lab, I was told my blood type had switched over from O to A. My blood arrived, and I spent the next 5 hours knitting, dozing, reading, watching my soaps and chatting with Marty. Tanked up, we left around 4, another long day devoted to transplant fallout.
I'm happy to report that the vampire in me is fully sated. I'm re-energized, breathing normally, and can now cultivate my A personality to its fullest and sickest.
Thursday, December 3, 2009
Infidel, a Review
Throughout my nearly 4-year leukemia journey, I've always rejected the question: why me? Why not me? I had lived a privileged life until leukemia derailed me. Fear, pain, guilt have wracked those 4 years, but there were some extraordinarily happy times sprinkled throughout the ordeal.
I just finished a memoir written by a Somalian woman, Ayaan Hirsi Ali. What this gutsy woman experienced her entire life makes my misery ridiculously short-term. Hirsi Ali is the kind of person I was thinking about when I rejected the "why me?" question.
The major themes of the book are Islam, women's rights and politics in Africa, Holland and the United States. Hirsi Ali, now employed by the conservative think tank American Enterprise Institute (Washington, DC), tells the jaw-dropping story of her Somalian, Ethiopian and Kenyan childhood, her escape to Germany (to avoid an arranged marriage to a Canadian Muslim) and eventually, asylum in Holland. Her time in Holland radicalizes her. Everything works; everyone, including refugees, are accorded basic human rights and then some; violence is uncommon. Most puzzling is that Hell is nowhere to be found. She begins to see Islam through Dutch eyes, becoming a citizen and then being elected to serve in Parliament. Violence re-enters her life when a colleague with whom (Theo van Gogh) she makes a short film is murdered by an Islamic extremist. A fatwa is issued against her, and she spends months in hiding, heavily guarded. The memoir ends with her moving to the United States and writing Infidel. She returned to Holland in 2007. Death threats are still tossed her way.
Hirsi Ali and I were both dealt fates we wouldn't wish upon anyone. Our battles are ongoing, but she carries a lifetime of scars, abject fear, and confusion on her shoulders. She defines bravery. As a 4-year leukemia survivor, I just try to put up a good front.
I just finished a memoir written by a Somalian woman, Ayaan Hirsi Ali. What this gutsy woman experienced her entire life makes my misery ridiculously short-term. Hirsi Ali is the kind of person I was thinking about when I rejected the "why me?" question.
The major themes of the book are Islam, women's rights and politics in Africa, Holland and the United States. Hirsi Ali, now employed by the conservative think tank American Enterprise Institute (Washington, DC), tells the jaw-dropping story of her Somalian, Ethiopian and Kenyan childhood, her escape to Germany (to avoid an arranged marriage to a Canadian Muslim) and eventually, asylum in Holland. Her time in Holland radicalizes her. Everything works; everyone, including refugees, are accorded basic human rights and then some; violence is uncommon. Most puzzling is that Hell is nowhere to be found. She begins to see Islam through Dutch eyes, becoming a citizen and then being elected to serve in Parliament. Violence re-enters her life when a colleague with whom (Theo van Gogh) she makes a short film is murdered by an Islamic extremist. A fatwa is issued against her, and she spends months in hiding, heavily guarded. The memoir ends with her moving to the United States and writing Infidel. She returned to Holland in 2007. Death threats are still tossed her way.
Hirsi Ali and I were both dealt fates we wouldn't wish upon anyone. Our battles are ongoing, but she carries a lifetime of scars, abject fear, and confusion on her shoulders. She defines bravery. As a 4-year leukemia survivor, I just try to put up a good front.
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