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.
Friday, December 11, 2009
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.
Friday, November 27, 2009
I Lived for This
Except for the fact that the turkey was the worst I've ever cooked, Thanksgiving Day was the best in memory. I did most of the cooking, so I was exhausted by the time we got to dessert (plus, my ankles were swollen), but thankfulness doesn't begin to describe what I was feeling.
For the first time since August, Marty and I and our three kids were all home. I'd been to hell and back in the interim, so there was a very special synergy to the reunion. I lived for this and times like them. I am a happy woman.
The day started with listening to the obligatory "Alice's Restaurant" on the radio. Marty and I had breakfast alone, and tuned into the Macys Thanksgiving Day Parade, one of the cheesiest spectacles I can't do without. It's tradition. During this time, I was working on dinner preparations.
The five of us had hors d'oeurves by the fire around 3:00 pm, and then it was a mad scramble to put the finishing touches on dinner. The kids played a board game while the parents slaved.
Despite the centerpiece of the meal being a dud, it was a wonderful repast. George Winston's "Winter" played on the stereo, and we sat around talking and telling stories long after we'd finished eating. An hour or so later, we regrouped for Mom's apple pie and more conversation. I was starting to tip over by that point, not that anyone noticed.
Someone got the idea that we should do a family weigh-in. We totaled our weight, which was somewhere near 753 lbs. Then the kids computed our combined BMI (body mass index), and even though we had each mysteriously gained three pounds apiece, we were within the normal range. Then the kids decided to have a push-up contest, Mark pitted against Mariel and Harry, who alternated turns. Marty and I kept track of the counts. Mark reached 50 first, with Mariel and Harry combining for a respectable 45.
At that point I was caving in, a blissful idiot. Today I plan to do nothing but enjoy the family circle. It doesn't get better than this.
For the first time since August, Marty and I and our three kids were all home. I'd been to hell and back in the interim, so there was a very special synergy to the reunion. I lived for this and times like them. I am a happy woman.
The day started with listening to the obligatory "Alice's Restaurant" on the radio. Marty and I had breakfast alone, and tuned into the Macys Thanksgiving Day Parade, one of the cheesiest spectacles I can't do without. It's tradition. During this time, I was working on dinner preparations.
The five of us had hors d'oeurves by the fire around 3:00 pm, and then it was a mad scramble to put the finishing touches on dinner. The kids played a board game while the parents slaved.
Despite the centerpiece of the meal being a dud, it was a wonderful repast. George Winston's "Winter" played on the stereo, and we sat around talking and telling stories long after we'd finished eating. An hour or so later, we regrouped for Mom's apple pie and more conversation. I was starting to tip over by that point, not that anyone noticed.
Someone got the idea that we should do a family weigh-in. We totaled our weight, which was somewhere near 753 lbs. Then the kids computed our combined BMI (body mass index), and even though we had each mysteriously gained three pounds apiece, we were within the normal range. Then the kids decided to have a push-up contest, Mark pitted against Mariel and Harry, who alternated turns. Marty and I kept track of the counts. Mark reached 50 first, with Mariel and Harry combining for a respectable 45.
At that point I was caving in, a blissful idiot. Today I plan to do nothing but enjoy the family circle. It doesn't get better than this.
Saturday, November 21, 2009
Murder and Mayhem
This is way off the leukemia topic, which I'm taking as a good sign.
When I was younger, I loved movies. I took a film class in college and got hooked on watching films not so much for entertainment but for the rich details the director offered up. Of course, I was an Ingmar Bergman fan.
Then I stopped going to the movies. Some of this had to do with the change in direction my life took when I started a family. Going into Manhattan for a movie and a night of clubbing became a quaint memory. Walt Disney films became a staple, and then I just stopped going. Sure, I saw a few films in the theater, a few on TV, but I lost my taste for the medium and didn't miss it at all. Even Woody Allen became stale. I haven't watched a film on the big screen since The Hours.
Part of my reluctance to see anything rated R is the level of graphic violence that completely ruins the experience for me. Blood and gore is not my sport. Chick flicks leave me cold. Special effects don't wow me. I prefer quirky: A Fish Called Wanda, Raising Arizona, The Motorcycle Diaries. You get the picture.
Marty has talked me into watching Netflix films with him of late, some old, some new. I enjoyed Witness for the Prosecution, and we watched The Thin Man for the umpteenth time. Then we received The Taking of Pelham 123, which I thought was the old version but it turned out to be the recent remake. The remake featured good actors and the obligatory special effects. Modern technology played a big part in the movie, and the characters displayed complicated psychological motivations. We watched the movie over a pizza and it was a fun way to spend a Friday evening.
But the original version, which we watched last night, was the better movie. Made 35 years ago, it captures New York and New Yorkers brilliantly. Parts of it were hilarious. The other thing that bothers me about contemporary films is the unnerving number of plot twists. I don't mind complex and complicated, but I don't like being jerked around either. So, other than the annoying James Bondian music, the original wins my vote hands down. Apologies to John Travolta and Denzel Washington.
When I was younger, I loved movies. I took a film class in college and got hooked on watching films not so much for entertainment but for the rich details the director offered up. Of course, I was an Ingmar Bergman fan.
Then I stopped going to the movies. Some of this had to do with the change in direction my life took when I started a family. Going into Manhattan for a movie and a night of clubbing became a quaint memory. Walt Disney films became a staple, and then I just stopped going. Sure, I saw a few films in the theater, a few on TV, but I lost my taste for the medium and didn't miss it at all. Even Woody Allen became stale. I haven't watched a film on the big screen since The Hours.
Part of my reluctance to see anything rated R is the level of graphic violence that completely ruins the experience for me. Blood and gore is not my sport. Chick flicks leave me cold. Special effects don't wow me. I prefer quirky: A Fish Called Wanda, Raising Arizona, The Motorcycle Diaries. You get the picture.
Marty has talked me into watching Netflix films with him of late, some old, some new. I enjoyed Witness for the Prosecution, and we watched The Thin Man for the umpteenth time. Then we received The Taking of Pelham 123, which I thought was the old version but it turned out to be the recent remake. The remake featured good actors and the obligatory special effects. Modern technology played a big part in the movie, and the characters displayed complicated psychological motivations. We watched the movie over a pizza and it was a fun way to spend a Friday evening.
But the original version, which we watched last night, was the better movie. Made 35 years ago, it captures New York and New Yorkers brilliantly. Parts of it were hilarious. The other thing that bothers me about contemporary films is the unnerving number of plot twists. I don't mind complex and complicated, but I don't like being jerked around either. So, other than the annoying James Bondian music, the original wins my vote hands down. Apologies to John Travolta and Denzel Washington.
Monday, November 16, 2009
The First 100 Days
Today I am 100 days out from transplant. It's a milestone, even if a somewhat arbitrary one. If you make it to roughly Day 100, survival rates are more favorable. Your body is somewhat stronger, and should you develop gvhd (graft vs. host disease), you will be in better shape (perhaps) to ward off some of its more devastating effects.
The next step will be to start weaning myself from the immune suppressants I take to prevent or minimize full-blown war within my body. Actually, a little gvhd is seen as a good thing as it indicates that the donor cells are at least skirmishing with the rest of me, including any residual leukemia.
When I had my first transplant, I knitted myself a sweater with decidedly mixed results. It looks like a pretty nice sweater, but it has an odd fit I didn't see coming. Last week, I decided to take up some knitting projects that wouldn't be as challenging as a sweater, but would still be fun and useful. I'll be knitting a lot of scarves in the weeks to come. I'll be mixing up the patterns and colors so it should be amusing. It's also good physical therapy for my continued weakness in my right arm and hand that developed when they stretched my rotator cuff while implanting my catheter. Maybe I'll graduate to hats and mittens/gloves when the scarving becomes tedious.
mb: Thanks for your well wishes on my previous post.
The next step will be to start weaning myself from the immune suppressants I take to prevent or minimize full-blown war within my body. Actually, a little gvhd is seen as a good thing as it indicates that the donor cells are at least skirmishing with the rest of me, including any residual leukemia.
When I had my first transplant, I knitted myself a sweater with decidedly mixed results. It looks like a pretty nice sweater, but it has an odd fit I didn't see coming. Last week, I decided to take up some knitting projects that wouldn't be as challenging as a sweater, but would still be fun and useful. I'll be knitting a lot of scarves in the weeks to come. I'll be mixing up the patterns and colors so it should be amusing. It's also good physical therapy for my continued weakness in my right arm and hand that developed when they stretched my rotator cuff while implanting my catheter. Maybe I'll graduate to hats and mittens/gloves when the scarving becomes tedious.
mb: Thanks for your well wishes on my previous post.
Thursday, November 12, 2009
Once a Week to Once a Month
My clinic visit was uneventful yesterday. My blood counts are good, although still slow on the reds. But I'm producing them, which is what counts. My doctor said there was no need to see me for a month. Whoopee!
Now I seriously have to find things to do with all my time. I went on a covert mission to a virtually empty Target the other day (masked and gloved) to buy some new drinking glasses. I don't plan to casually pop into stores as the flu and holiday shopping season cooks up.
Marty and I have started jog-walking, which is how I plan to get my strength back. Now that my brain functions well enough to follow more than short snippets of reading material, I relish the thought of curling up with a hot drink and a book as often as possible. I also hope to knit scarves for family members, which will require another masked outing, maybe tomorrow. Domestic bliss or what?
But the activity I should be working on is writing a book. I have plenty of material already written. Now I just have to find the discipline to pull something together that others may want to read. Is it possible to piece together the variety of writing I've done and have it cohere? Much is in essay format, but I have short stories, poems, letters, and blog posts I'd like to somehow weave together. I don't want to write a memoir per se, but I do want to include our Costa Rican sojourn and the leukemia war. The Complete Works of PJ?
A project like that would keep me busy enough while I'm laying low. In the meantime, I have to hope my internal battle against evil leukemic clones is proceeding according to plan. Being engaged in a project will take my mind off those nasty cells and keep me from getting cranky.
Now I seriously have to find things to do with all my time. I went on a covert mission to a virtually empty Target the other day (masked and gloved) to buy some new drinking glasses. I don't plan to casually pop into stores as the flu and holiday shopping season cooks up.
Marty and I have started jog-walking, which is how I plan to get my strength back. Now that my brain functions well enough to follow more than short snippets of reading material, I relish the thought of curling up with a hot drink and a book as often as possible. I also hope to knit scarves for family members, which will require another masked outing, maybe tomorrow. Domestic bliss or what?
But the activity I should be working on is writing a book. I have plenty of material already written. Now I just have to find the discipline to pull something together that others may want to read. Is it possible to piece together the variety of writing I've done and have it cohere? Much is in essay format, but I have short stories, poems, letters, and blog posts I'd like to somehow weave together. I don't want to write a memoir per se, but I do want to include our Costa Rican sojourn and the leukemia war. The Complete Works of PJ?
A project like that would keep me busy enough while I'm laying low. In the meantime, I have to hope my internal battle against evil leukemic clones is proceeding according to plan. Being engaged in a project will take my mind off those nasty cells and keep me from getting cranky.
Saturday, November 7, 2009
How to Shape a Day
Now that I have some blood flow and am no longer stupified on ativan and NCIS reruns, I find find myself with vast quantities of time begging to be filled. Many of the things I'd like to do are forbidden to me. I actually like to rake leaves, for instance.
Here's how I busied myself today. I was the first up so I made the coffee, something I haven't done in over 3 months. I have not lost my touch. I poured myself a cup and sat down with my laptop, thinking about fried eggs. After breakfast, I switched my spring/summer clothes for fall/winter, which is a good work-out. I barely wore any of the spring/summer items since the leukemia returned in April, wearing mostly hospital gowns or loungewear since then. That's what I get for not dilly-dallying with the switchover in Spring. I could have saved myself today's task, but really, I was happy to have something to do.
As soon as Marty went out to do a little fall clean-up, I donned mask and gloves and removed 2 screens from my kitchen window (from the inside) and proceeded to vacuum them as well as wash the insides of the windows. These screens can stay in all year, but they cut down on light and visibility and who needs that in the months ahead?
I read a little Headlong by Michael Frayn and wrote some emails and this post. It's so much easier to think straight when you're not feeling green. Oh, and I skipped my afternoon nap for the second day in a row. Lest you think I'm getting too cocky, I do feel tired. But that's what tea and crumpets are for, and that's going to be the very next thing I'll make.
Here's how I busied myself today. I was the first up so I made the coffee, something I haven't done in over 3 months. I have not lost my touch. I poured myself a cup and sat down with my laptop, thinking about fried eggs. After breakfast, I switched my spring/summer clothes for fall/winter, which is a good work-out. I barely wore any of the spring/summer items since the leukemia returned in April, wearing mostly hospital gowns or loungewear since then. That's what I get for not dilly-dallying with the switchover in Spring. I could have saved myself today's task, but really, I was happy to have something to do.
As soon as Marty went out to do a little fall clean-up, I donned mask and gloves and removed 2 screens from my kitchen window (from the inside) and proceeded to vacuum them as well as wash the insides of the windows. These screens can stay in all year, but they cut down on light and visibility and who needs that in the months ahead?
I read a little Headlong by Michael Frayn and wrote some emails and this post. It's so much easier to think straight when you're not feeling green. Oh, and I skipped my afternoon nap for the second day in a row. Lest you think I'm getting too cocky, I do feel tired. But that's what tea and crumpets are for, and that's going to be the very next thing I'll make.
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