We have been enjoying hours and hours of Olympics. Seven channels!
At the moment, I am living a sad inversion of the Olympic motto: Slower! Lower! Weaker! I walk more slowly, my blood counts can't get any lower, and simple tasks (like taking a shower or climbing the stairs) leave me winded.
Unfortunately, the symptoms of progressing leukemia and the side effects of the clinical trial are hard to distinguish right now. So we can't tell if I'm benefitting or not. At some point in the next several weeks, we might see a turnaround in the blood counts. It would be great if it happened before the end of the Olympics, so that I could experience some Faster-Higher-Stronger of my own, with the right sound track on television. It would not take much.
Sunday, July 29, 2012
Wednesday, July 25, 2012
Buying Green Bananas
I am three days into the five days of injections that begin the first 28-day cycle of the clinical trial. So far, so good.
The day before the trial started, I had an uplifting experience and a scare.
The uplifting experience was a Meeting for Worship with a concern for Healing held by the local Quakers (my religious community). Since I am in isolation, my family participated via Skype. We had some technical difficulties during the hour, but it was good to see all those familiar faces doing the Quaker silent worship thing on my behalf. I heard afterward that when the meeting was over and we had signed off, the gathered Quakers hung around saying nice things about me, some of which were relayed to me. It was like being eulogized while still alive, which seems more useful than the usual practice.
The scare was a fever that climbed as high as 99.7. If it had reached 100.5, I would have had to go the emergency room, and my participation in the trial would have been postponed until the fever was controlled. Fortunately, the fever went away as quickly as it appeared, and we were able to begin the trial on Monday.
Monday was a long day. It started with Jan and me leaving Champaign shortly after 5:00 in the morning so that we could get to the clinic in Chicago by 8:00. Jan's best friend Maggi flew in for a much-appreciated 24-hour visit, joining us at the clinic not long after we arrived. I had a blood test which confirmed that my counts continue to approach zero. I had another EKG. Then I was called back to a reclining chair — chair 18 — in the infusion therapy room, which is a large room with a lot of chairs separated from each other by curtains. There are a few private infusion rooms, some with beds, but I guess I didn't rate. I spent about eight hours in that chair, except for bathroom breaks.
We heard that it took a couple of hours to prepare the injection, and we expected the injection to take place around 10:00. This would allow for the eight hours of blood draws we agreed to in the consent form. It took about four hours for the injections to be delivered from the pharmacy, so we only had time for six hours of blood draws before the clinic closed, at the same time that I was receiving a bag of platelets and a bag of red blood.
After a final blood draw around 6:00 p.m., the three of us headed to the apartment Jan and I rented for the week and ordered dinner from a Mediterranean restaurant. It was wonderful to be able to spend the day with Maggi, especially for Jan.
Maggi left at 7:00 a.m. on Tuesday. We were back at the clinic at 8:00, scheduled for another bag of red blood and the second day of injections. I got chair 18 again. There was no order for blood, so it took a while for the blood to show up, and it again took several hours for the injections to arrive from the pharmacy. We left the clinic a little before 1:00. Leftovers for dinner, and then a lovely walk along the lakeshore around sunset.
Wednesday was easy. We arrived at 8:30 and were done around 10:00, again in chair 18. It didn't make the injections hurt any less, and they are pretty painful, but it's nice not to spend so much time in the clinic.
Thursday and Friday may be a little longer, depending on what transfusions I need and when, to get me through the weekend before I return to the clinic on Monday to visit my doctor. I will probably get more transfusions Monday, and the current plan is to have a line inserted into my arm to make it easier to draw and receive blood.
If we're lucky, there will be more blood tests and transfusions in the coming weeks and months than the veins in my arms can handle. Having this procedure is an act of optimism, like buying green bananas.
The day before the trial started, I had an uplifting experience and a scare.
The uplifting experience was a Meeting for Worship with a concern for Healing held by the local Quakers (my religious community). Since I am in isolation, my family participated via Skype. We had some technical difficulties during the hour, but it was good to see all those familiar faces doing the Quaker silent worship thing on my behalf. I heard afterward that when the meeting was over and we had signed off, the gathered Quakers hung around saying nice things about me, some of which were relayed to me. It was like being eulogized while still alive, which seems more useful than the usual practice.
The scare was a fever that climbed as high as 99.7. If it had reached 100.5, I would have had to go the emergency room, and my participation in the trial would have been postponed until the fever was controlled. Fortunately, the fever went away as quickly as it appeared, and we were able to begin the trial on Monday.
Monday was a long day. It started with Jan and me leaving Champaign shortly after 5:00 in the morning so that we could get to the clinic in Chicago by 8:00. Jan's best friend Maggi flew in for a much-appreciated 24-hour visit, joining us at the clinic not long after we arrived. I had a blood test which confirmed that my counts continue to approach zero. I had another EKG. Then I was called back to a reclining chair — chair 18 — in the infusion therapy room, which is a large room with a lot of chairs separated from each other by curtains. There are a few private infusion rooms, some with beds, but I guess I didn't rate. I spent about eight hours in that chair, except for bathroom breaks.
We heard that it took a couple of hours to prepare the injection, and we expected the injection to take place around 10:00. This would allow for the eight hours of blood draws we agreed to in the consent form. It took about four hours for the injections to be delivered from the pharmacy, so we only had time for six hours of blood draws before the clinic closed, at the same time that I was receiving a bag of platelets and a bag of red blood.
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| Ouch! Times two! |
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| A nap with Jan was one of the best parts of a long day in chair 18 |
Maggi left at 7:00 a.m. on Tuesday. We were back at the clinic at 8:00, scheduled for another bag of red blood and the second day of injections. I got chair 18 again. There was no order for blood, so it took a while for the blood to show up, and it again took several hours for the injections to arrive from the pharmacy. We left the clinic a little before 1:00. Leftovers for dinner, and then a lovely walk along the lakeshore around sunset.
Wednesday was easy. We arrived at 8:30 and were done around 10:00, again in chair 18. It didn't make the injections hurt any less, and they are pretty painful, but it's nice not to spend so much time in the clinic.
Thursday and Friday may be a little longer, depending on what transfusions I need and when, to get me through the weekend before I return to the clinic on Monday to visit my doctor. I will probably get more transfusions Monday, and the current plan is to have a line inserted into my arm to make it easier to draw and receive blood.
If we're lucky, there will be more blood tests and transfusions in the coming weeks and months than the veins in my arms can handle. Having this procedure is an act of optimism, like buying green bananas.
Thursday, July 19, 2012
All Together (Nuclear Family Version)
Jake arrived Tuesday, cutting short by a few weeks his planned stay in Cambridge, where he was working at Harvard with his Haverford thesis adviser. He may continue to work for his thesis adviser into the fall. Having Jake at home will be good for each of us, in different ways.
Paul will benefit from having his big brother around: someone to play tennis or kick a soccer ball with, and someone to talk to about things he isn't comfortable talking to his parents about. The talking could have happened by phone, but it's more likely to happen, and to happen more often, when they're under the same roof.
We will all benefit from having another adult around the house: an additional cook, an additional shopper, an additional driver, an additional listener.
Jake will benefit from being able to help at a time when we need help.
There is only so much friends and family can do when they are one or two thousand miles away. We know they wish they could do more and be around more. We wish so, too. Most of our extended family lives near Boston, and it would certainly be easier on everyone if we were not the Midwest outliers.
Paul will benefit from having his big brother around: someone to play tennis or kick a soccer ball with, and someone to talk to about things he isn't comfortable talking to his parents about. The talking could have happened by phone, but it's more likely to happen, and to happen more often, when they're under the same roof.
We will all benefit from having another adult around the house: an additional cook, an additional shopper, an additional driver, an additional listener.
Jake will benefit from being able to help at a time when we need help.
There is only so much friends and family can do when they are one or two thousand miles away. We know they wish they could do more and be around more. We wish so, too. Most of our extended family lives near Boston, and it would certainly be easier on everyone if we were not the Midwest outliers.
Sunday, July 15, 2012
Tick Tock
The past week featured two trips to Chicago, two visits to the local cancer center for platelet transfusions, and a decision to bring our older son Jake home for the rest of the summer and the fall.
The gist of my doctor's message was that most people in my position would choose to keep seeking treatment, but we should think hard about how I want to spend what is, statistically, not a lot of remaining time. How much of that time do I want to spend in Chicago, maybe in the hospital, maybe suffering painful battles with infections, and all for a less than likely positive outcome? Where do we want to draw the line? That is a very hard question to answer, and we have not yet done so.
Then a nurse brought in a consent form for participating in the clinical trial we had heard about earlier, which is the only treatment option that the leukemia team thinks has some chance of success for me.
The drug is SGI-110. The protocol doesn't sound so bad: an injection a day for five days, with frequent blood draws on the first and last days, and a bone marrow biopsy on the last day. Then three weeks at home, waiting and watching blood counts. Then we repeat the cycle if there is any sign that it's helping. The main potential side effects are not anything that I'm not already experiencing: lowered blood counts, feeling tired, high risk of life-threatening infections. The injections are done as an outpatient, so the main drawback for us is the disruption of being in Chicago for five straight days.
Since the alternative is waiting at home for some disease or infection to take advantage of my weakened immune system and do me in, we decided that the treatment falls on this side of the line we haven't drawn yet. It may or may not work, and the odds are not in my favor, but it's worth a shot. So we signed the forms. The nurse was unsure whether I would be able to start in one week or two — the timing depended on the length of time since my last dose of prednisone, and she didn't recall whether that gap needed to be one week or two.
That was a sad ride home from Chicago. We talked to my parents and to Mara. We decided to ask Jake to come home from his summer job at Harvard, and to delay the start of his graduate work at Berkeley so that he could be home this fall. No matter how this turns out, it will be better for all of us to be together.
I went to the local cancer center for a platelet transfusion. My platelets were at 11 on Monday, and the Chicago team felt I should get some more in preparation for my Thursday biopsy, part of the screening tests for the clinical trial.
At the end of the day, we learned that I could not start the clinical trial for another week, on July 23. The nurse thought I had stopped taking prednisone a week earlier than was the case. This was discouraging. The longer we wait, the more time the leukemia has to build, and the greater are the chances of an infection taking hold.
Monday
The Monday trip to Chicago, with Jan, had the usual blood work and a meeting with my doctor, now back from vacation. My blood counts continue to drop and are now at dangerously low levels across the board: red, white, and platelets.The gist of my doctor's message was that most people in my position would choose to keep seeking treatment, but we should think hard about how I want to spend what is, statistically, not a lot of remaining time. How much of that time do I want to spend in Chicago, maybe in the hospital, maybe suffering painful battles with infections, and all for a less than likely positive outcome? Where do we want to draw the line? That is a very hard question to answer, and we have not yet done so.
Then a nurse brought in a consent form for participating in the clinical trial we had heard about earlier, which is the only treatment option that the leukemia team thinks has some chance of success for me.
The drug is SGI-110. The protocol doesn't sound so bad: an injection a day for five days, with frequent blood draws on the first and last days, and a bone marrow biopsy on the last day. Then three weeks at home, waiting and watching blood counts. Then we repeat the cycle if there is any sign that it's helping. The main potential side effects are not anything that I'm not already experiencing: lowered blood counts, feeling tired, high risk of life-threatening infections. The injections are done as an outpatient, so the main drawback for us is the disruption of being in Chicago for five straight days.
Since the alternative is waiting at home for some disease or infection to take advantage of my weakened immune system and do me in, we decided that the treatment falls on this side of the line we haven't drawn yet. It may or may not work, and the odds are not in my favor, but it's worth a shot. So we signed the forms. The nurse was unsure whether I would be able to start in one week or two — the timing depended on the length of time since my last dose of prednisone, and she didn't recall whether that gap needed to be one week or two.
That was a sad ride home from Chicago. We talked to my parents and to Mara. We decided to ask Jake to come home from his summer job at Harvard, and to delay the start of his graduate work at Berkeley so that he could be home this fall. No matter how this turns out, it will be better for all of us to be together.
Tuesday
On Tuesday, we talked by phone to the doctor running the clinical trial. That raised our spirits, as she recounted some of the success stories they have had. She didn't sugarcoat the odds, but she did second our opinion that there's little harm in trying. We also heard from the nurse coordinating the trial that we would be starting the first cycle next week (July 16), which was another boost to our spirits. We made arrangements to stay in Chicago for four nights at the same place we rented in January and February, when I was out of the hospital but needed to stay close.Wednesday
On Wednesday, I told my supervisor at work that they should be prepared for me to stop working. I have been working about 50% time lately, mostly designing user interfaces for web and smartphone apps. It is enjoyable work, and it keeps my mind occupied in a good way. They were already planning to hire an additional person to keep up with anticipated extra work. Now they can conduct that search with a different perspective about their future needs.I went to the local cancer center for a platelet transfusion. My platelets were at 11 on Monday, and the Chicago team felt I should get some more in preparation for my Thursday biopsy, part of the screening tests for the clinical trial.
At the end of the day, we learned that I could not start the clinical trial for another week, on July 23. The nurse thought I had stopped taking prednisone a week earlier than was the case. This was discouraging. The longer we wait, the more time the leukemia has to build, and the greater are the chances of an infection taking hold.
Thursday
A friend drove me up to Chicago for screening tests for the clinical trial: a couple of heart tests (MUGA and EKG), some blood work, and a bone marrow biopsy. We won't get any results from this biopsy. Some of the samples go to the drug company that is sponsoring the trial, and the rest get frozen at the Chicago clinic for future research.
The nurse practitioner who performed the biopsy gave me her professional opinion on the return of my leukemia: "This sucks." So true! She also prescribed an additional antibiotic and, at my request, some sleeping pills.
Friday
Another platelet transfusion at the local cancer center, accompanied by my son Paul. I don't get the same boost in platelet counts that most people get from a transfusion. So not only am I not producing enough platelets because of the leukemia, but I'm also losing the ones I do make or receive, for some unknown reason.
The outward manifestation of my low platelet count is that my lower legs are densely covered with tiny red dots called petechiae. My low red blood cell count causes me to be more tired than I have been recently. My low white cell count causes me to worry about every sniffle or ache — is this the start of some killer infection?
= = =
Was the account above hard to read? That seems fair — it was hard to write.
It is not easy to be realistic and optimistic at the same time. Realistic, because we have to prepare for the worst. Optimistic, because a positive outlook correlates to better outcomes, and because hope feels better than despair. On the positive side: I have some symptoms of GVHD, indicating that my immune system might still have some useful fight left in it, if the new treatment can slow down the leukemia.
The odds are against me, but that has been true before. The last time the odds looked especially bad, late last fall, I was in a hospital bed in Chicago battling a deadly sinus infection and leukemia at the same time. This time, I get to be at home: grilling on the patio, watching the Tour de France and movies with my family, doing useful work, taking walks in the neighborhood, holding and being held by my wife. This is better.
Sunday, July 8, 2012
Triple Sibling Infusion
We typically visit New England in the summer, shortly before school starts. Our parents and siblings all live in the Northeast, with almost all of them in the Boston area. The trip almost always includes time in New Hampshire, just as the blueberry season begins there. We thought we would be able to do it again this summer, though we expected it to involve driving instead of flying to accomodate my still-compromised immune system.
With my relapse, there's no way I should be getting that far away from my doctors or getting exposed to extra people, so I will be staying in Illinois for the first summer in a long, long time. Maybe even for the first time since moving to Illinois 25 years ago. Paul will fly to Boston, and Jake is already there for the summer, so they will have to be our representatives at the annual summer family gatherings.
Since I had to cancel my summer travel plans, and to help ease the shock and pain of learning my leukemia was back, all three of my siblings flew out for a long weekend of hanging out, cooking, and yard work. And blueberries.
There is a U-Pik farm not too far west of town. Last year was their last year of being officially open for business, but they still let you come and pick and pay on the honor system. There are lots of weeds, and the bushes have not been pruned, and it's a little sad. It was also just shy of 100 degrees and very humid. But the late afternoon light was beautiful, making the scene look like a painting of an Italian landscape. And, of course, there were blueberries! Writing the perfect metaphor about finding beauty and sweetness in a day's dying light, in a blueberry patch succumbing to weeds, is left as an exercise for the reader.
I did not pick, an extension of my doctor's orders to avoid yard work. I roamed the rows finding bushes that were relatively loaded. It has been so hot and dry for the last week and a half that the berries were smaller than expected. However, they pack the flavor of a larger, plumper berry into a smaller volume, so they should make a good pie.
With my relapse, there's no way I should be getting that far away from my doctors or getting exposed to extra people, so I will be staying in Illinois for the first summer in a long, long time. Maybe even for the first time since moving to Illinois 25 years ago. Paul will fly to Boston, and Jake is already there for the summer, so they will have to be our representatives at the annual summer family gatherings.
Since I had to cancel my summer travel plans, and to help ease the shock and pain of learning my leukemia was back, all three of my siblings flew out for a long weekend of hanging out, cooking, and yard work. And blueberries.
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| Mara tames some tomatoes. |
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| There are always plenty of weeds. Karl and Lauren take some of them out. |
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| Karl and others picking... |
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| Paul picked the most. |
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| Joe holds Paul's bucket while Paul takes the picture. |
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| Mara flips Karl's famous pancakes, some of which got to be blueberry pancakes. |
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| Karl oatmeal bread. |
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| Lauren works on a blueberry pie. |
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| As expected, the pie turned out great. I should have worn a hat! I forgot that I don't need much hair to have a bad hair day. |
Monday, July 2, 2012
Hints of Sunshine
We went up to Chicago today to discuss potential paths forward.
All of the paths start the same way, getting off prednisone as quickly as possible without triggering a dangerous amount of GVHD. I started the weaning late last week, and I am starting to have a little skin rash at the current dose of alternating 20mg and 10mg daily. The rest of the week will be at 10mg, followed by a transition to 5mg daily. The current weaning schedule will have me completely off prednisone in a couple of weeks, subject to adjustment based on the amount of GVHD.
Taking the prednisone leash off my immune system could slow the progress of the leukemia, or maybe even start to reduce it, though I don't get the feeling that the latter outcome is likely.
Once I am no longer taking prednisone, and if the number of blasts in my marrow is still too high to make a donor lymphocyte infusion worthwhile, there are a couple of promising new chemotherapy protocols that might make sense for me to try. Both treatments involve outpatient visits to the clinic and were described as well tolerated (minimal side effects).
Like weaning myself off prednisone, the chemotherapy might be enough to give my new immune system the upper hand.
If not, and as long as the chemo reduces the number of blasts in the marrow sufficiently, then we might try a donor lymphocyte infusion. A DLI is yet another way to tip the scales in favor of the immune system, again with the risk of triggering too much GVHD. When my sister donated stem cells, the team also collected lymphocytes and froze them, just in case we needed them at some point in the future. I guess it's good to know my medical team was more prepared for a relapse than I was.
Along with a rough plan, we got the following news:
All of the paths start the same way, getting off prednisone as quickly as possible without triggering a dangerous amount of GVHD. I started the weaning late last week, and I am starting to have a little skin rash at the current dose of alternating 20mg and 10mg daily. The rest of the week will be at 10mg, followed by a transition to 5mg daily. The current weaning schedule will have me completely off prednisone in a couple of weeks, subject to adjustment based on the amount of GVHD.
Taking the prednisone leash off my immune system could slow the progress of the leukemia, or maybe even start to reduce it, though I don't get the feeling that the latter outcome is likely.
Once I am no longer taking prednisone, and if the number of blasts in my marrow is still too high to make a donor lymphocyte infusion worthwhile, there are a couple of promising new chemotherapy protocols that might make sense for me to try. Both treatments involve outpatient visits to the clinic and were described as well tolerated (minimal side effects).
Like weaning myself off prednisone, the chemotherapy might be enough to give my new immune system the upper hand.
If not, and as long as the chemo reduces the number of blasts in the marrow sufficiently, then we might try a donor lymphocyte infusion. A DLI is yet another way to tip the scales in favor of the immune system, again with the risk of triggering too much GVHD. When my sister donated stem cells, the team also collected lymphocytes and froze them, just in case we needed them at some point in the future. I guess it's good to know my medical team was more prepared for a relapse than I was.
Along with a rough plan, we got the following news:
- My platelet count did not fall between Thursday and today, which meant I did not need a transfusion.
- There are no blasts in my peripheral blood, which suggests that the blasts are not proliferating as rapidly as they might.
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