On Tuesday, I had my Day 12 bone marrow biopsy. (Twelve days from the start of chemo.) On Wednesday, we had the preliminary results we wanted — an empty marrow. On Thursday, we got insurance approval to move ahead with the transplant. My sister will fly out on Sunday and start the health screening process on Monday.
This timetable is shorter than the one I followed this winter. I think one reason is that I have so far avoided the opportunistic infections that added so much excitement the last time: conjunctivitis, sinus infection, pneumonia, fungal gum infection...
Friday, October 28, 2011
Sunday, October 23, 2011
Come for the Chemo, Stay for the Food
Ok, it's not that good. But the improvement in the food offerings since I was here last winter are remarkable.
There is a full-page add-on to the menu — the Health and Wellness page — loaded with whole grains, legumes, baked fish, and other healthy additions to the previous menu.
There is an after-hours menu, in recognition that patients don't always get to, or want to, order food between 7 a.m. and 8 p.m. We sometimes have procedures that take us away from our rooms at inconvenient times, or we might feel nauseous in the early evening.
And there are food service ambassadors who stop by every room at least once a day to ask about the food and how you're eating.
A few days into my stay, after hearing that I had little appetite, my food service visitor told me about an off-menu item that a lot of patients enjoy: homemade ginger ale, which is a small bottle of Perrier and a cup of homemade ginger syrup, so you can mix it to the strength you want. Ginger is a traditional appetite aid. The syrup is heavy on the ginger and light on the sugar, so it makes a great drink if you love ginger (which I always do) and if sugar turns you off (which it currently does). The chef also makes homemade candied ginger, which is OK but not as good as the Reed's Crystallized Ginger that my brother Karl brought me.
It is a shame that I can't really enjoy much of the new menu, since it contains so much that I was craving when I was here before. For now, there is very little that appeals to me from either the new or the old menu. The only items I actually enjoy are Cream of Wheat and grits, with a little bit of brown sugar. I force myself to eat other things — baked fish, fruit, hard-boiled eggs, hummus with veggies — because I know I need to eat a variety of foods for my own good.
The hospital does offer a couple of nutrition drinks for people who can't bring themselves to eat. One is Ensure, a protein and calorie shake available in chocolate and vanilla. The other is a Gatorade-like drink, also loaded with protein and calories. Both are very sweet, perhaps acceptably so under normal circumstances but nauseatingly so for me right now. So I had better keep putting away the bland proteins and calories I can tolerate, because I can't imagine keeping either of those drinks down.
Most of the food service improvements started a little over a month ago, when the hospital hired a new chef. What excellent timing on my part, waiting for the food service to turn around before I returned.
There is a full-page add-on to the menu — the Health and Wellness page — loaded with whole grains, legumes, baked fish, and other healthy additions to the previous menu.
There is an after-hours menu, in recognition that patients don't always get to, or want to, order food between 7 a.m. and 8 p.m. We sometimes have procedures that take us away from our rooms at inconvenient times, or we might feel nauseous in the early evening.
And there are food service ambassadors who stop by every room at least once a day to ask about the food and how you're eating.
A few days into my stay, after hearing that I had little appetite, my food service visitor told me about an off-menu item that a lot of patients enjoy: homemade ginger ale, which is a small bottle of Perrier and a cup of homemade ginger syrup, so you can mix it to the strength you want. Ginger is a traditional appetite aid. The syrup is heavy on the ginger and light on the sugar, so it makes a great drink if you love ginger (which I always do) and if sugar turns you off (which it currently does). The chef also makes homemade candied ginger, which is OK but not as good as the Reed's Crystallized Ginger that my brother Karl brought me.
It is a shame that I can't really enjoy much of the new menu, since it contains so much that I was craving when I was here before. For now, there is very little that appeals to me from either the new or the old menu. The only items I actually enjoy are Cream of Wheat and grits, with a little bit of brown sugar. I force myself to eat other things — baked fish, fruit, hard-boiled eggs, hummus with veggies — because I know I need to eat a variety of foods for my own good.
The hospital does offer a couple of nutrition drinks for people who can't bring themselves to eat. One is Ensure, a protein and calorie shake available in chocolate and vanilla. The other is a Gatorade-like drink, also loaded with protein and calories. Both are very sweet, perhaps acceptably so under normal circumstances but nauseatingly so for me right now. So I had better keep putting away the bland proteins and calories I can tolerate, because I can't imagine keeping either of those drinks down.
Most of the food service improvements started a little over a month ago, when the hospital hired a new chef. What excellent timing on my part, waiting for the food service to turn around before I returned.
Wednesday, October 19, 2011
The Same, But Different
Since I'm back in the same hospital being treated for the same disease as I was nine months ago, a lot is obviously the same. The IV pole, the quiet grunting and occasional chirping of the pump, the semi-regular interruptions for vitals or blood or medications or consultation, Rectal Swab Tuesdays, the expected but unpredictable fevers and chills and sweats.
Not surprisingly, there are a lot of the same staff. Their usual greeting is something like, "It is so nice to see you again." I know what they mean, and I'm glad they're taking care of me because they are really good, but I can't help thinking, you know what would be even nicer? If I weren't here!
There are also a lot of differences. I have already mentioned the improved food service, where the changes are so large they deserve their own post.
The treatment plan is different. Last time, I got a cocktail of three drugs over seven days. This time, I got two drugs on day one, three days off, with a repeat yesterday. One of the drugs is the same as last time, but at a much higher dose. The new one is bright blue, and it's pretty disturbing to see something that color running into your body. It is also disturbing to have your pee turn blue, but I was prepared for that.
Another different side effect, and I'm not sure which chemical is responsible, is the onset of rigors about an hour after the infusions are done. In the span of 10 minutes, I go from having a slight chill to mild shivering to intense full-body shaking. The first time it happened, I was pretty freaked out, but it stopped as soon as they gave me some Tylenol. Last night, I could tell it was coming. Since I was already taking Tylenol, they gave me Demerol which stopped the shaking in about 20 minutes.
My fitness level is different. In January I had recently run a half marathon and had been lifting weights regularly, so I was in very good shape for someone my age. While I was able to build up my running over the summer and had started some strength work, I was still a long way from getting back to my January fitness level. And with the late August round of chemo, I was reduced to walking. So, I come in to this round less fit than I was the first time, though still relatively fit compared to the population at large.
My marrow is different. My understanding is that in January, 50% of the blood cells in my marrow were blasts. That's a lot of leukemia. This time, 20% of the blood cells in my marrow are blasts, and half of the marrow cells carry the XX chromosome, which means they came from my sister. 50% blasts versus 20% works in my favor, because there is less leukemia to kill than before. I thought that having half of the cells by from my sister would also be helpful, but it doesn't matter. Before the transplant, we kill them all and start from a clean slate.
My perspective is different. The first time through, it didn't really occur to me that there might be a second time through. Kill the leukemia, do the transplant, recover — sure, there could be (and were) some painful or uncomfortable bumps along the road, but it was still a story with a relatively simple arc. This time, I am aware that this is the second of X attempts to beat the leukemia. I'm hoping that when we get through all the wrangling, we find out that X=2. But I know it might be 3. Or more. For now, 2 is my new favorite number.
Not surprisingly, there are a lot of the same staff. Their usual greeting is something like, "It is so nice to see you again." I know what they mean, and I'm glad they're taking care of me because they are really good, but I can't help thinking, you know what would be even nicer? If I weren't here!
There are also a lot of differences. I have already mentioned the improved food service, where the changes are so large they deserve their own post.
The treatment plan is different. Last time, I got a cocktail of three drugs over seven days. This time, I got two drugs on day one, three days off, with a repeat yesterday. One of the drugs is the same as last time, but at a much higher dose. The new one is bright blue, and it's pretty disturbing to see something that color running into your body. It is also disturbing to have your pee turn blue, but I was prepared for that.
Another different side effect, and I'm not sure which chemical is responsible, is the onset of rigors about an hour after the infusions are done. In the span of 10 minutes, I go from having a slight chill to mild shivering to intense full-body shaking. The first time it happened, I was pretty freaked out, but it stopped as soon as they gave me some Tylenol. Last night, I could tell it was coming. Since I was already taking Tylenol, they gave me Demerol which stopped the shaking in about 20 minutes.
My fitness level is different. In January I had recently run a half marathon and had been lifting weights regularly, so I was in very good shape for someone my age. While I was able to build up my running over the summer and had started some strength work, I was still a long way from getting back to my January fitness level. And with the late August round of chemo, I was reduced to walking. So, I come in to this round less fit than I was the first time, though still relatively fit compared to the population at large.
My marrow is different. My understanding is that in January, 50% of the blood cells in my marrow were blasts. That's a lot of leukemia. This time, 20% of the blood cells in my marrow are blasts, and half of the marrow cells carry the XX chromosome, which means they came from my sister. 50% blasts versus 20% works in my favor, because there is less leukemia to kill than before. I thought that having half of the cells by from my sister would also be helpful, but it doesn't matter. Before the transplant, we kill them all and start from a clean slate.
My perspective is different. The first time through, it didn't really occur to me that there might be a second time through. Kill the leukemia, do the transplant, recover — sure, there could be (and were) some painful or uncomfortable bumps along the road, but it was still a story with a relatively simple arc. This time, I am aware that this is the second of X attempts to beat the leukemia. I'm hoping that when we get through all the wrangling, we find out that X=2. But I know it might be 3. Or more. For now, 2 is my new favorite number.
Thursday, October 13, 2011
Good News, Bad News: The Sequel
The good news is, I know how to do this.
The bad news is, once was enough.
The worse news is, once was not enough.
The good news is, I'm back under the direct daily care of one of the best AML teams in country.
The bad news is, I need to be back under the direct daily care of one of the best AML teams in country.
The good news is, I know how to do this.
(Also, there's a treadmill.)
= = =
We don't have final results from the biopsy yet, but we have enough information to know that, without a change of plan, the leukemia would eventually win. Unlike the initial diagnosis, this was not a complete shock. We knew this was a possible, maybe even probable, explanation for the behavior of my blood counts. It is still hard news to hear.
Anyway, I am back in Chicago for a different mix of chemo drugs than we used before. As was the case nine months ago, the first goal is to knock down the leukemia. Depending on how that goes, there are several possible paths: another round of chemo, another stem cell transplant, a donor lymphocyte infusion...
With so many possible paths, I don't have a handle on how long I'm going to be here. I know the plan for tomorrow — start the chemo. Four days later, end the chemo. Then some waiting.
There is a lot that is familiar, which isn't surprising considering I spent nine weeks here at the beginning of the year. Coincidentally, my first nurse this time was my first nurse the last time. I remember many of the other nurses and staff on the floor. As before, a good night's sleep is a fantasy.
In addition to the familiar aspects, good and bad, there are some welcome changes.
The first difference I noticed after getting admitted last night was the menu. There is the same menu I ordered from at the beginning of the year, but stapled into it is a full page Health & Wellness menu. (The original menu is, I guess, for people who are hospitalized but unconcerned with health and wellness.)
For me, the highlights of this new page are whole wheat pancakes, whole wheat waffles, fruit toppings for both; hummus and veggies; black bean soup; black bean burger; chicken, turkey, or tofu wraps; grilled portabella mushroom; whole wheat pasta; veggie or tofu stir fry; whole wheat pizza; veggie quesadillas on whole wheat tortillas; black beans, brown rice, sweet potato fries.
I brought some supplemental food based on my experience last winter, but I'm not going to have to rely on it that much. Tonight I had the hummus and veggie appetizer, whole wheat pasta with marinara sauce and grilled chicken, and sweet potato fries. It was all good.
Today I also had several transportations. No long waits, no getting left alone in halls. What am I going to write about?
The bad news is, once was enough.
The worse news is, once was not enough.
The good news is, I'm back under the direct daily care of one of the best AML teams in country.
The bad news is, I need to be back under the direct daily care of one of the best AML teams in country.
The good news is, the menu has a new insert including everything I asked for during my previous stay.
The bad news is, making fun of the food was one of favorite passtimes.
(Also, there's a treadmill.)
= = =
We don't have final results from the biopsy yet, but we have enough information to know that, without a change of plan, the leukemia would eventually win. Unlike the initial diagnosis, this was not a complete shock. We knew this was a possible, maybe even probable, explanation for the behavior of my blood counts. It is still hard news to hear.
Anyway, I am back in Chicago for a different mix of chemo drugs than we used before. As was the case nine months ago, the first goal is to knock down the leukemia. Depending on how that goes, there are several possible paths: another round of chemo, another stem cell transplant, a donor lymphocyte infusion...
With so many possible paths, I don't have a handle on how long I'm going to be here. I know the plan for tomorrow — start the chemo. Four days later, end the chemo. Then some waiting.
There is a lot that is familiar, which isn't surprising considering I spent nine weeks here at the beginning of the year. Coincidentally, my first nurse this time was my first nurse the last time. I remember many of the other nurses and staff on the floor. As before, a good night's sleep is a fantasy.
- 12:00 a.m. Admitting doctor makes final decisions about evening medications.
- 1:15 a.m. I get stuck for a blood draw.
- 1:20 a.m. I ask the nurse about progress on the evening medications. I get one of them.
- 3:20 a.m. Another medication.
- 4:15 a.m. Vitals.
- 5:25 a.m. I get stuck for another blood draw. Luckily, my nurse is passing by the room and persuades the phlebotomist in my room to perform an additional draw scheduled for 6:00 a.m., saving me another stick within the hour.
- 7:00 a.m. More meds.
In addition to the familiar aspects, good and bad, there are some welcome changes.
The first difference I noticed after getting admitted last night was the menu. There is the same menu I ordered from at the beginning of the year, but stapled into it is a full page Health & Wellness menu. (The original menu is, I guess, for people who are hospitalized but unconcerned with health and wellness.)
For me, the highlights of this new page are whole wheat pancakes, whole wheat waffles, fruit toppings for both; hummus and veggies; black bean soup; black bean burger; chicken, turkey, or tofu wraps; grilled portabella mushroom; whole wheat pasta; veggie or tofu stir fry; whole wheat pizza; veggie quesadillas on whole wheat tortillas; black beans, brown rice, sweet potato fries.
I brought some supplemental food based on my experience last winter, but I'm not going to have to rely on it that much. Tonight I had the hummus and veggie appetizer, whole wheat pasta with marinara sauce and grilled chicken, and sweet potato fries. It was all good.
Today I also had several transportations. No long waits, no getting left alone in halls. What am I going to write about?
Monday, October 10, 2011
Nine-Month Anniversary
Nine months ago today, on January 10, I received my diagnosis of acute myeloid leukemia.
To celebrate the anniversary, I was back in the same office, having a bone marrow biopsy and then a consultation with my doctor.
We won't have a clear direction until later this week (Wednesday or Thursday), when my biopsy results are in and various teams have met to discuss them. My doctor suspects, based on blood tests, that I still have leukemia, and that the chemo treatment I had six weeks ago was not sufficiently poisonous. The biopsy will provide a lot of useful information: how healthy is my marrow, how well is the graft doing, how aggressive is the remaining leukemia.
To celebrate the anniversary, I was back in the same office, having a bone marrow biopsy and then a consultation with my doctor.
We won't have a clear direction until later this week (Wednesday or Thursday), when my biopsy results are in and various teams have met to discuss them. My doctor suspects, based on blood tests, that I still have leukemia, and that the chemo treatment I had six weeks ago was not sufficiently poisonous. The biopsy will provide a lot of useful information: how healthy is my marrow, how well is the graft doing, how aggressive is the remaining leukemia.
One scenario is that I go back to Chicago soon (maybe Friday) for a different kind of chemo, possibly followed by a second transplant. (Sometimes it takes several transplants to put leukemia into remission.) A variation of that scenario is that we do the chemo, it (finally) knocks out the leukemia, and my counts recover on their own, without a transplant. Or the biopsy might send us in another direction entirely.
So, I don't know exactly what's next, but I'm mentally prepared to reopen my satellite office in Chicago. If I do have to go back, I'll be better prepared this time — I know what food to bring, and my iPad and Kindle are loaded.
Happy anniversary!
Sunday, October 2, 2011
In Limbo
Another week, another couple of blood tests showing no increase in neutrophils. Fortunately, platelets are climbing, and red blood cells are holding, so I don't need transfusions.
I have a biopsy scheduled for October 10, in case this week shows no improvement. Blood counts can only suggest what is or isn't happening in the marrow. To really know, you have to get a piece of the marrow.
I guess it's not really Limbo. When you're in Limbo, you don't know when or if you're getting out. With the biopsy on my calendar, I do have an end in sight for what has been weeks of waiting for the neutrophils to get off the floor. In a week from tomorrow, either they will have started to climb or I'll be getting a biopsy.
In more definitive news, the Red Sox granted its younger fans full citizenship to Red Sox Nation, adding 2011 to the pantheon of exquisitely painful season-ending games: 2003, 1986, 1978, 1975... Now the kids get it.
I have a biopsy scheduled for October 10, in case this week shows no improvement. Blood counts can only suggest what is or isn't happening in the marrow. To really know, you have to get a piece of the marrow.
I guess it's not really Limbo. When you're in Limbo, you don't know when or if you're getting out. With the biopsy on my calendar, I do have an end in sight for what has been weeks of waiting for the neutrophils to get off the floor. In a week from tomorrow, either they will have started to climb or I'll be getting a biopsy.
In more definitive news, the Red Sox granted its younger fans full citizenship to Red Sox Nation, adding 2011 to the pantheon of exquisitely painful season-ending games: 2003, 1986, 1978, 1975... Now the kids get it.
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