I expected my counts to be low at today’s visit, but I was unpleasantly surprised at how low they really were. After being great two weeks ago, all of my counts are below normal because of my third bout with CMV and because of the drug Valcyte, which is used to treat the virus but which also suppresses bone marrow production. For more details about the "stupid virus," see last week's post about it.
My platelets were 27, white blood count 1.4 and hematocrit 25.2. The transfusion from last week helped somewhat, but not too much. The CMV results take longer than the rest; after last week’s test, the virus was actually gone. When I get the results of today’s test, which may come in tomorrow, we will hope that it is still negative. If so, I can begin tapering the Valcyte. The question is whether anything can be done to stop this cycle from repeating itself. I am totally stopping my last immune suppressant, Prograf, which should help. We’ll see if they come up with anything else.
I need to return Thursday for blood work, a probable bone marrow biopsy and, if needed, transfusions. As soon as I got home today, I gave myself a shot of Neupogen to boost my white count. I’ll give myself another shot tomorrow and Wednesday.
I’m just about six months out, which is where I was when my counts crashed in April, signaling the graft failure which led to my third transplant (the second if you don’t count my autologous transplant in 2003). Naturally I am jittery about the same thing happening again. But my low counts correlate with the CMV and Valcyte, and Melissa said to try not to worry.
Today I also saw my wonderful social worker, Mary Lou Hackett. Of course without revealing their identity, she often mentions long-term survivors who’ve been there, done that. She has said that in the first year after transplant, many people experience ups and downs with their counts.
Like a little kid, I asked her today if she could tell me the story about the people whose counts go up and down. It’s reassuring to hear repeatedly that I’m not the only one it happens to.
I told her my worries about the six-month mark, and asked her what she thought about my concerns.
“What do you think?” she asked.
“Well,” I said, looking out the window at the busy Boston street. “If a bus hit me on the corner six months ago, it doesn’t mean that another bus will hit me in the same spot today or any other day.”
She smiled.
I smiled. I thought that was a pretty good answer. Now I just have to believe in it.
Showing posts with label Valcyte. Show all posts
Showing posts with label Valcyte. Show all posts
Monday, December 8, 2008
Friday, October 17, 2008
Woudda coudda shoudda
In all my concern over my lowered counts, I didn’t dwell much on the fact that Oct. 15 would have marked one year out of transplant if my graft hadn’t mysteriously failed at six months.
I did, of course, think about it.
It would have been my second new birthday (following my first new birthday, my auto transplant, now my non-birthday, on Sept. 18, 2003).
If I hadn’t backpedaled, I would have learned who my donor is. I would feel the relief of having the experience be one whole year behind me.
Plenty of people are saying woudda coudda shoudda over their stock market purchases. "I would have," "I should have," "I could have" are words that people often apply to troubling events in their lives. Everyone knows it’s a waste of energy. It’s something we as cancer survivors must try especially hard to avoid. Other words are just as problematic, for example, “if only….” And “what if….”
“If only I hadn’t gotten cancer….what if it comes back…” They’re all part of the same non-productive way of thinking.
Emily did have a good “woulda” about my one-year-annversary that wasn’t.
“You would have been getting ready to go back to work,” she pointed out.
So true. I like my job writing for a newspaper, but there are countless benefits to staying home. I’ve spent more time with my kids than I ever would have. I can read the newspaper all morning. I can read books at my leisure, walk with friends, watch the dog swim, enjoy the mid-day sun that I missed in the office, and take a nap without feeling guilty. And now that I’ve discovered blogging, I can send my updates into the blogosphere and get support and feedback from people I know and friends I’ve never met. And I can send out support and reassurance in return.
Quick update: Today was the day to call Melissa for the results of the CMV test and the bone marrow biopsy. I didn’t want to get out of bed. Mary called and I told her I was lying there with the quilt over my head, imagining bad things…that Melissa would say the results were bad, or that she might even say they weren’t in, when in fact they might be in but were so bad that she wanted to tell me in person. Woa.
“Stop making scenarios,” Mary said. “Get up and make some pancakes and some strong coffee.” I told her that my mother used to come wiggle my toes and say, “Get up, get up.”
“Mary,” I said. “Tell me to get up.”
“OK,” she said. “Get up, get up, get up.”
So I did. I added half an Ativan to my morning pills, and when my heart stopped beating fast, I called Melissa.
The CMV was still negative. Only half the bone marrow results were in, and they looked fine. The chimerism and the rest would not be back until Monday. She said to stay on the Valcyte, because if I go off too quickly the CMV might come back.
I think I can deal with that for now. The sun is shining. My friend Barry is coming for a walk. The dog is lying in a patch of sunlight on the dining room rug. Soon she’ll be racing around in the lake. I’m going to see if I can get through the weekend by being a good Scarlett O’Hara.
I’ll think about it tomorrow. (Or the next day or the next day or the next.)
I did, of course, think about it.
It would have been my second new birthday (following my first new birthday, my auto transplant, now my non-birthday, on Sept. 18, 2003).
If I hadn’t backpedaled, I would have learned who my donor is. I would feel the relief of having the experience be one whole year behind me.
Plenty of people are saying woudda coudda shoudda over their stock market purchases. "I would have," "I should have," "I could have" are words that people often apply to troubling events in their lives. Everyone knows it’s a waste of energy. It’s something we as cancer survivors must try especially hard to avoid. Other words are just as problematic, for example, “if only….” And “what if….”
“If only I hadn’t gotten cancer….what if it comes back…” They’re all part of the same non-productive way of thinking.
Emily did have a good “woulda” about my one-year-annversary that wasn’t.
“You would have been getting ready to go back to work,” she pointed out.
So true. I like my job writing for a newspaper, but there are countless benefits to staying home. I’ve spent more time with my kids than I ever would have. I can read the newspaper all morning. I can read books at my leisure, walk with friends, watch the dog swim, enjoy the mid-day sun that I missed in the office, and take a nap without feeling guilty. And now that I’ve discovered blogging, I can send my updates into the blogosphere and get support and feedback from people I know and friends I’ve never met. And I can send out support and reassurance in return.
Quick update: Today was the day to call Melissa for the results of the CMV test and the bone marrow biopsy. I didn’t want to get out of bed. Mary called and I told her I was lying there with the quilt over my head, imagining bad things…that Melissa would say the results were bad, or that she might even say they weren’t in, when in fact they might be in but were so bad that she wanted to tell me in person. Woa.
“Stop making scenarios,” Mary said. “Get up and make some pancakes and some strong coffee.” I told her that my mother used to come wiggle my toes and say, “Get up, get up.”
“Mary,” I said. “Tell me to get up.”
“OK,” she said. “Get up, get up, get up.”
So I did. I added half an Ativan to my morning pills, and when my heart stopped beating fast, I called Melissa.
The CMV was still negative. Only half the bone marrow results were in, and they looked fine. The chimerism and the rest would not be back until Monday. She said to stay on the Valcyte, because if I go off too quickly the CMV might come back.
I think I can deal with that for now. The sun is shining. My friend Barry is coming for a walk. The dog is lying in a patch of sunlight on the dining room rug. Soon she’ll be racing around in the lake. I’m going to see if I can get through the weekend by being a good Scarlett O’Hara.
I’ll think about it tomorrow. (Or the next day or the next day or the next.)
Thursday, October 2, 2008
Counts were down, but my spirit is steady
I had my clinic visit today instead of my usual Monday.
I started the day by meeting nurse practitioner Mary Jane Ott for Reiki at Dana-Farber's Zakim Center for Integrative Therapies, in keeping with the plan that many people have: Try to add a little something nice onto your clinic visit. I’m not exactly sure how Reiki works, but I do know that it makes me sit still and concentrate on my breath. When we're done, I always feel more relaxed.
I expected my counts to be down, and sure enough, they were, because I am still taking four tablets a day of Valcyte to combat the CMV, or (cytomegalovirus), which affects people with weakened immune systems.
White count was down to 1.5 (after I was so happy to get into the 3’s just weeks ago), and platelets were down to 90, the first time in a long time that they dipped below 100. My hematocrit held steady at 30.3.
Dr. Alyea said he was sure it was from the Valcyte. Since I’ve seen the same thing happen when taking this drug before, I wasn't worried.
But I was not happy, either. Lower counts are not anyone's fault, but when I look at the printout, I somehow feel like I failed a test. I would rather be like the proud kid who puts his or her report card on the fridge. Instead, the printout is stuffed in my bag.
Alyea said the virus was responding to the Valcyte, and if I tested negative this week, I could start decreasing. If not, I’ll have to continue, and my counts might even go lower.
He asked me if I was playing tennis, and I said I was taking lessons with our coach, George. We had a short talk about lessons – his golf lessons and my tennis lessons – and both agreed that initially, they can make your game worse, probably because you're thinking too much or trying too hard.
I told him that George didn’t have any pity on me; when I tell him I’m tired, he either advises breathing through my nose because it’s more efficient, or slicing the ball more. “Slicing will get you out of any problem,” is George’s motto.
I thought perhaps that the doctor might disapprove and say that if I was tired, then I should stop. But, he said, “That’s great!”
Once I get going on the tennis topic I sometimes don’t know when to stop. My inner censor told me that there was a waiting room full of patients, and I should stop gabbing. But I was already going, so I also told him that George was making me work hard to forgo my normal forehand in favor of the circle swing, or loop, that is now the preferable motion.
Dr. Alyea wanted to know what a circle swing was. I got up and demonstrated with a full sweep of my arm – a circle – instead of just bringing the racquet back. He looked puzzled and agreed with me that the circle didn't look very efficient.
He ended the visit by telling me to decrease my tacrolimus and sirolimus, adding that if the CMV was gone he or Melissa would call.
As he was walking down the hallway and I headed the other way to the appointment desk, he looked over his shoulder at me and said…drumroll… “I wouldn’t do that circle swing if I were you.”
On the way out, I went to Starbucks for my now-habitual coffee, another post-visit treat. I waited on line next to a fellow masked-and-gloved- person. (By the way, if you’re from New York, you wait ON line; everyone else waits IN line.) I bought a bag of decaf to take home, plus a tall coffee to go. The young masked man asked me what variety. I told him it was espresso.
“I don’t drink Starbucks at home,” he said. “I only get it when I’m out.”
He explained that he used to live in Alaska, where he drank a local brand from the K Bay Café in Homer, Ala. He’s so loyal to the brand, and he likes it so much, that he now orders it by mail.
We left the line and chatted for a few minutes. He is 45 days out of transplant for AML, and he is also being treated by Dr. Alyea. He asked me how far out I am. I’m trying to come up with a quick answer. (“How far out from which transplant?” I want to ask.) Also, I didn't want to even mention the r-word (relapse) in front of this young man who just finished treatment.
So, I said, “I had an auto five years ago and it didn’t stick, so now I’m about 100 days out of my allo.” No need to give him TMI about the graft failure with my first allo and explain that this is my second allo and third transplant overall.
We chatted for a few more minutes about our habit of carefully watching the servers to see if they’ve touched the lid too much, and then wondering if it’s OK to ask for another lid if we’re not happy. Then we wished each other luck and headed back to pick up our cars.
It was nice to be talking to the doctor about tennis swings and to the fellow patient about coffee brands. Just normal things. Nothing life-altering.
I started the day by meeting nurse practitioner Mary Jane Ott for Reiki at Dana-Farber's Zakim Center for Integrative Therapies, in keeping with the plan that many people have: Try to add a little something nice onto your clinic visit. I’m not exactly sure how Reiki works, but I do know that it makes me sit still and concentrate on my breath. When we're done, I always feel more relaxed.
I expected my counts to be down, and sure enough, they were, because I am still taking four tablets a day of Valcyte to combat the CMV, or (cytomegalovirus), which affects people with weakened immune systems.
White count was down to 1.5 (after I was so happy to get into the 3’s just weeks ago), and platelets were down to 90, the first time in a long time that they dipped below 100. My hematocrit held steady at 30.3.
Dr. Alyea said he was sure it was from the Valcyte. Since I’ve seen the same thing happen when taking this drug before, I wasn't worried.
But I was not happy, either. Lower counts are not anyone's fault, but when I look at the printout, I somehow feel like I failed a test. I would rather be like the proud kid who puts his or her report card on the fridge. Instead, the printout is stuffed in my bag.
Alyea said the virus was responding to the Valcyte, and if I tested negative this week, I could start decreasing. If not, I’ll have to continue, and my counts might even go lower.
He asked me if I was playing tennis, and I said I was taking lessons with our coach, George. We had a short talk about lessons – his golf lessons and my tennis lessons – and both agreed that initially, they can make your game worse, probably because you're thinking too much or trying too hard.
I told him that George didn’t have any pity on me; when I tell him I’m tired, he either advises breathing through my nose because it’s more efficient, or slicing the ball more. “Slicing will get you out of any problem,” is George’s motto.
I thought perhaps that the doctor might disapprove and say that if I was tired, then I should stop. But, he said, “That’s great!”
Once I get going on the tennis topic I sometimes don’t know when to stop. My inner censor told me that there was a waiting room full of patients, and I should stop gabbing. But I was already going, so I also told him that George was making me work hard to forgo my normal forehand in favor of the circle swing, or loop, that is now the preferable motion.
Dr. Alyea wanted to know what a circle swing was. I got up and demonstrated with a full sweep of my arm – a circle – instead of just bringing the racquet back. He looked puzzled and agreed with me that the circle didn't look very efficient.
He ended the visit by telling me to decrease my tacrolimus and sirolimus, adding that if the CMV was gone he or Melissa would call.
As he was walking down the hallway and I headed the other way to the appointment desk, he looked over his shoulder at me and said…drumroll… “I wouldn’t do that circle swing if I were you.”
On the way out, I went to Starbucks for my now-habitual coffee, another post-visit treat. I waited on line next to a fellow masked-and-gloved- person. (By the way, if you’re from New York, you wait ON line; everyone else waits IN line.) I bought a bag of decaf to take home, plus a tall coffee to go. The young masked man asked me what variety. I told him it was espresso.
“I don’t drink Starbucks at home,” he said. “I only get it when I’m out.”
He explained that he used to live in Alaska, where he drank a local brand from the K Bay Café in Homer, Ala. He’s so loyal to the brand, and he likes it so much, that he now orders it by mail.
We left the line and chatted for a few minutes. He is 45 days out of transplant for AML, and he is also being treated by Dr. Alyea. He asked me how far out I am. I’m trying to come up with a quick answer. (“How far out from which transplant?” I want to ask.) Also, I didn't want to even mention the r-word (relapse) in front of this young man who just finished treatment.
So, I said, “I had an auto five years ago and it didn’t stick, so now I’m about 100 days out of my allo.” No need to give him TMI about the graft failure with my first allo and explain that this is my second allo and third transplant overall.
We chatted for a few more minutes about our habit of carefully watching the servers to see if they’ve touched the lid too much, and then wondering if it’s OK to ask for another lid if we’re not happy. Then we wished each other luck and headed back to pick up our cars.
It was nice to be talking to the doctor about tennis swings and to the fellow patient about coffee brands. Just normal things. Nothing life-altering.
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