Okay, they gave me this plan on a piece of paper. It's supposed to be the real schedule.
From January 2-6 they give me one dose of brain radiation each day.
While that's happening, I get a pre-admittance on January 2. This allows me to go straight to the 11th floor, already admitted, if I get a fever or have other complications. On January 3, they place a "Hickman catheter" near my clavicle. It has tubes that goes up my carotid artery and also down to the Vena Cava, near my heart. They'll use that to administer chemo and to draw blood.
On Monday, January 9, I get my sixth and last dose of brain radiation. After that, from January 10-12, I get two doses a day of total body irradiation, six doses total.
Then on Friday January 13, I start chemo. I'll be in the hospital for that, and I'll get chemo for three days. On Monday, January 16 (Martin Luther King, Jr. Day), I get a one day break, and then I get the cord blood cells, my transplant, on Tuesday, January 17.
After that, I'm told it usually takes about 20 days for cord blood cells to engraft and for my blood counts to start rising. Then we try to manage (or avoid) Graft-vs-Host disease for another 80 days before I can leave Nashville again. That will be the end of April.
So that's the official plan!
Wednesday, December 14, 2011
Tuesday, December 13, 2011
Change of Plans ... Again
Dr. Jagasia told me today that I keep throwing curve balls to the transplant team. Between leukemia cells in the spinal fluid, minor heart attacks, and now inexplicable spots—which look like dry skin and they call a rash—on my legs, nothing is simply smooth.
So they're throwing me curve balls back.
It turns out we can't wait until after the New Year to begin the transplant preparation. They want to give me "cerebro-spinal" radiation. That would be my brain and spine. That requires ten doses, done once per day, only on weekdays that are not holidays, and all ten doses have to be done before they start the chemo. So the new plan is 10 doses of cerebro-spinal radiation, then three total body irraditions, then chemo for six or seven days, then a one day break to begin immunosuppressive drugs to prevent rejection, then the transplant.
The whole Christmas break is too long to wait to begin that more than three week process. We don't know yet, however, whether radiology will start next week or the week after Christmas.
First, though, I have to have another marrow biopsy, so I suspect that will have to happen this coming week. And, say the doctor and the nurse practitioner, while they're poking a hole in my hip for the marrow, they might as well poke one more in my spine and get a third clean spinal fluid check.
I did at least ask her to schedule the spinal tap—they call it a "lumbar puncture"—for the afternoon. I seem to be a lot less nervous at afternoon spinal taps.
This will be the sixth one.
Assuming that my marrow and spinal fluid are still leukemia free, and assuming that my heart is no worse than it was last month after the heart attack, they will begin zapping me the week after Christmas at the latest. There's only three workdays that week, so I would only get three doses. Still, that would allow the chemo to start around the January 16th.
I don't think Dr. Jagasia even wants to wait that long. He doesn't trust my version of leukemia not to come back, and he already doesn't like it that it's been two months since my last chemo dose, nor that the last chemo dose was only one medicine. He wants to get the stem cells in there before there's a potential for relapse.
So that was my news for today. Ten doses of direct brain radiation. Nice. I've heard what that's like from others who have had it, though the people I know who've had it got more like 20 doses. At least in this case, I'm getting something in a smaller dose!
I'm rested. My blood counts are up a bit. I don't hurt, I'm not having headaches, and I feel great. I have a lot of artificial courage for this upcoming transplant, as well as having learned some more realistic trust in God over the last five months. Nonetheless, listening to all the news today was a little tiring, as was the pulmonary function test I took. Those who've had a lung test like that know how tiring it can be.
So I took the kids out to IHOP after the last appointment. That was fun.
I got an email later telling me that the nurse practitioner had talked to the radiologist and a schedule has been made. I'll be told about it in the morning. So I guess I'll have more news for you then!
So they're throwing me curve balls back.
It turns out we can't wait until after the New Year to begin the transplant preparation. They want to give me "cerebro-spinal" radiation. That would be my brain and spine. That requires ten doses, done once per day, only on weekdays that are not holidays, and all ten doses have to be done before they start the chemo. So the new plan is 10 doses of cerebro-spinal radiation, then three total body irraditions, then chemo for six or seven days, then a one day break to begin immunosuppressive drugs to prevent rejection, then the transplant.
The whole Christmas break is too long to wait to begin that more than three week process. We don't know yet, however, whether radiology will start next week or the week after Christmas.
First, though, I have to have another marrow biopsy, so I suspect that will have to happen this coming week. And, say the doctor and the nurse practitioner, while they're poking a hole in my hip for the marrow, they might as well poke one more in my spine and get a third clean spinal fluid check.
I did at least ask her to schedule the spinal tap—they call it a "lumbar puncture"—for the afternoon. I seem to be a lot less nervous at afternoon spinal taps.
This will be the sixth one.
Assuming that my marrow and spinal fluid are still leukemia free, and assuming that my heart is no worse than it was last month after the heart attack, they will begin zapping me the week after Christmas at the latest. There's only three workdays that week, so I would only get three doses. Still, that would allow the chemo to start around the January 16th.
I don't think Dr. Jagasia even wants to wait that long. He doesn't trust my version of leukemia not to come back, and he already doesn't like it that it's been two months since my last chemo dose, nor that the last chemo dose was only one medicine. He wants to get the stem cells in there before there's a potential for relapse.
So that was my news for today. Ten doses of direct brain radiation. Nice. I've heard what that's like from others who have had it, though the people I know who've had it got more like 20 doses. At least in this case, I'm getting something in a smaller dose!
I'm rested. My blood counts are up a bit. I don't hurt, I'm not having headaches, and I feel great. I have a lot of artificial courage for this upcoming transplant, as well as having learned some more realistic trust in God over the last five months. Nonetheless, listening to all the news today was a little tiring, as was the pulmonary function test I took. Those who've had a lung test like that know how tiring it can be.
So I took the kids out to IHOP after the last appointment. That was fun.
I got an email later telling me that the nurse practitioner had talked to the radiologist and a schedule has been made. I'll be told about it in the morning. So I guess I'll have more news for you then!
Saturday, December 10, 2011
The New Leukemia Cure: Why It's Waiting
About three months ago, an article came out about a potential leukemia cure. I wrote about it on September 13. It was in many news outlets, though my favorite version was in the New York Times. (It looks like you have to log in to see that story now. Sad. Here's the same story at incpire.com and ABC News.)
This weekend we're back home in Selmer for a wedding, and I found a Discover magazine with the 100 top stories of 2011. The potential leukemia cure was #10.
It had some information I didn't see in the newspaper articles.
Doctors David Porter and Carl June treated three leukemia patients for whom standard chemotherapy had not worked. They used a harmless form of the HIV virus to carry a mutation into the patient's T-cells that would cause the T-cells to target the leukemia cells and destroy them.
They chose HIV because the dangerous version attacks T-cells. They "disarmed" it, piggy-backed the mutation they needed onto it, and the virus carried the mutation into the DNA of the T-cells.
Or at least, that's what I got from the articles, and I read about five of them.
What Discover explains is that they actually mutated the patients' T-cells to destroy all B-cells, not just leukemia cells.
Each of the patients had Chronic Lymphocytic Leukemia (CLL), a form of leukemia that affects lymphocytes (hence the name). Lymphocytes are immune system cells that come in the form of T-cells, B-cells, and NK (Natural Killer) cells, and in patients with CLL, at least one type of lymphocyte has become abnormal, useless, and is proliferating, getting in the way of other, useful blood cells. When they crowd out the other white blood cells, you are left prone to infection and disease. When they crowd out the red blood cells, you die of anemia.
CLL is the most common form of leukemia, and B-cells are the most common malignant cell involved in CLL.
Thus, destroying the B-cells will cure most CLL patients. In the trial, it successfully put two patients in remission and lowered the leukemia cells by 70% in the third.
Those are great results, but the treatment does not only destroy the malignant cells. It destroys all B-cells. Forever.
This happens because the T-cells are permanently mutated. As your body produces more B-cells, the T-cells destroy them.
B-cells produce antibodies and develop a memory for germs that attack the body. Losing them weakens the immune system. This is a serious side effect of the new treatment. On the other hand, a weakened immune system is a lot better than dying of leukemia because chemotherapy didn't work on you.
There is a treatment for the loss of B-cells, which involved regular infusions of antibodies pulled from the blood of blood donors.
So how does this apply to other cancers and to me?
It is possible this will work on other forms of leukemia and other cancers.
B-cells have a protein on their surface known as CD-19. They are the only cell in the body with that protein marker. So the mutation the doctors put into the T-cell caused them to recognize and destroy cell with the CD-19 protein.
In order to use the same treatment on other leukemias and other forms of cancer, they have to find a similar marker to target, one that is specific to that disease.
In CLL, the doctors can determine which cell in the problem, and usually it's the B cell.
The doctors don't know what my abnormal cells are.
Everyone's bone marrow has stem cells which develop into the various blood cells. First they develop into either a lymphoid stem cell or a myeloid progenitor. If they become a lymphoid stem cells, then they'll eventually be either a T-cell, B-cell, or NK-cell. If they become a myeloid progenitor, they'll eventually become either a neutrophil, eosdinophil, basophil, mast cell, or monocyte.
My leukemic cells are stem cells that began to develop, but then went bad before they ever became lymphoid stem cells or a myeloid progenitors. The doctors also can't figure out which type those cells were intending to become.
My cells do have markers like the CD-19 that is on the B-cells. CD-4 and CD-56 are the ones that usually elicit a diagnosis of Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN, see tab above). With that diagnosis, it appears the blasts (the immature cells) intended to become dendritic cells, which are myeloid cells. On the other hand, they used to call that disease NK-cell lymphoma, meaning they were wondering whether the CD-4 and CD-56 markers indicated those blasts were going to become NK-cells, which are lymphoid, not myeloid.
My bad cells have CD-4 and CD-56, but not on the same cells, and the CD-4 is more common. They have other markers (CD-123 and TCL-1), which indicate BPDCN, but they also have CD-10 which is more indicative of a potential lymphocyte.
Acute (fast moving) and chronic (slow moving) leukemias are divided up based on whether the bad cells are descendants of the lymphoid stem cell or the myeloid progenitor. Acute leukemia is usually split into Acute Lymphoid Leukemia or Acute Myeloid Leukemia. ALL has a much better survival rate than AML.
Since they can't determine whether mine is lymphoid or myeloid, they call it Acute Undifferentiated Leukemia, and survival rates for AUL are worst of all, though accurate rates can't be determined because of the rarity of the disease. I'm convinced that survival rates are only worse because doctors have only learned to treat it well in the last five years.
That said, I'm not a blood expert, so I don't know if CD-10 or CD-56 is limited to one certain white blood cells. If so, then perhaps they could use a targeted therapy like they used on those CLL patients, but I would guess that there are not enough cases like mine to find out how to target those markers. Not only would those specific markers be rare, but you would only want to use such a therapy on those that didn't respond to chemotherapy. After chemotherapy, you still have all your white blood cells. Right now, this new therapy destroys one forever.
As for other cancers, the issue will be if they can find a marker that is unique to the cancer cell. That marker will have to be on the surface of the cell because T-cells don't peer down inside of the cells they target.
Anyway, I wrote all that to say that there's a reason that research is progressing slowly on this kind of treatment. They have to see the long term effects even on those who are cured, and they have to find out whether people can handle the treatment. One of the patients developed kidney failure from processing all the dead B-cells.
This was a rather technical blog post. I'll try not to write too many like this, though I love this kind of stuff (especially now).
This weekend we're back home in Selmer for a wedding, and I found a Discover magazine with the 100 top stories of 2011. The potential leukemia cure was #10.
It had some information I didn't see in the newspaper articles.
Doctors David Porter and Carl June treated three leukemia patients for whom standard chemotherapy had not worked. They used a harmless form of the HIV virus to carry a mutation into the patient's T-cells that would cause the T-cells to target the leukemia cells and destroy them.
They chose HIV because the dangerous version attacks T-cells. They "disarmed" it, piggy-backed the mutation they needed onto it, and the virus carried the mutation into the DNA of the T-cells.
Or at least, that's what I got from the articles, and I read about five of them.
What Discover explains is that they actually mutated the patients' T-cells to destroy all B-cells, not just leukemia cells.
Each of the patients had Chronic Lymphocytic Leukemia (CLL), a form of leukemia that affects lymphocytes (hence the name). Lymphocytes are immune system cells that come in the form of T-cells, B-cells, and NK (Natural Killer) cells, and in patients with CLL, at least one type of lymphocyte has become abnormal, useless, and is proliferating, getting in the way of other, useful blood cells. When they crowd out the other white blood cells, you are left prone to infection and disease. When they crowd out the red blood cells, you die of anemia.
CLL is the most common form of leukemia, and B-cells are the most common malignant cell involved in CLL.
Thus, destroying the B-cells will cure most CLL patients. In the trial, it successfully put two patients in remission and lowered the leukemia cells by 70% in the third.
Those are great results, but the treatment does not only destroy the malignant cells. It destroys all B-cells. Forever.
This happens because the T-cells are permanently mutated. As your body produces more B-cells, the T-cells destroy them.
B-cells produce antibodies and develop a memory for germs that attack the body. Losing them weakens the immune system. This is a serious side effect of the new treatment. On the other hand, a weakened immune system is a lot better than dying of leukemia because chemotherapy didn't work on you.
There is a treatment for the loss of B-cells, which involved regular infusions of antibodies pulled from the blood of blood donors.
So how does this apply to other cancers and to me?
Will This Work on Other Forms of Leukemia and Other Cancers?
It is possible this will work on other forms of leukemia and other cancers.
B-cells have a protein on their surface known as CD-19. They are the only cell in the body with that protein marker. So the mutation the doctors put into the T-cell caused them to recognize and destroy cell with the CD-19 protein.
In order to use the same treatment on other leukemias and other forms of cancer, they have to find a similar marker to target, one that is specific to that disease.
In CLL, the doctors can determine which cell in the problem, and usually it's the B cell.
The doctors don't know what my abnormal cells are.
Everyone's bone marrow has stem cells which develop into the various blood cells. First they develop into either a lymphoid stem cell or a myeloid progenitor. If they become a lymphoid stem cells, then they'll eventually be either a T-cell, B-cell, or NK-cell. If they become a myeloid progenitor, they'll eventually become either a neutrophil, eosdinophil, basophil, mast cell, or monocyte.
My leukemic cells are stem cells that began to develop, but then went bad before they ever became lymphoid stem cells or a myeloid progenitors. The doctors also can't figure out which type those cells were intending to become.
My cells do have markers like the CD-19 that is on the B-cells. CD-4 and CD-56 are the ones that usually elicit a diagnosis of Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN, see tab above). With that diagnosis, it appears the blasts (the immature cells) intended to become dendritic cells, which are myeloid cells. On the other hand, they used to call that disease NK-cell lymphoma, meaning they were wondering whether the CD-4 and CD-56 markers indicated those blasts were going to become NK-cells, which are lymphoid, not myeloid.
My bad cells have CD-4 and CD-56, but not on the same cells, and the CD-4 is more common. They have other markers (CD-123 and TCL-1), which indicate BPDCN, but they also have CD-10 which is more indicative of a potential lymphocyte.
Acute (fast moving) and chronic (slow moving) leukemias are divided up based on whether the bad cells are descendants of the lymphoid stem cell or the myeloid progenitor. Acute leukemia is usually split into Acute Lymphoid Leukemia or Acute Myeloid Leukemia. ALL has a much better survival rate than AML.
Since they can't determine whether mine is lymphoid or myeloid, they call it Acute Undifferentiated Leukemia, and survival rates for AUL are worst of all, though accurate rates can't be determined because of the rarity of the disease. I'm convinced that survival rates are only worse because doctors have only learned to treat it well in the last five years.
That said, I'm not a blood expert, so I don't know if CD-10 or CD-56 is limited to one certain white blood cells. If so, then perhaps they could use a targeted therapy like they used on those CLL patients, but I would guess that there are not enough cases like mine to find out how to target those markers. Not only would those specific markers be rare, but you would only want to use such a therapy on those that didn't respond to chemotherapy. After chemotherapy, you still have all your white blood cells. Right now, this new therapy destroys one forever.
As for other cancers, the issue will be if they can find a marker that is unique to the cancer cell. That marker will have to be on the surface of the cell because T-cells don't peer down inside of the cells they target.
Anyway, I wrote all that to say that there's a reason that research is progressing slowly on this kind of treatment. They have to see the long term effects even on those who are cured, and they have to find out whether people can handle the treatment. One of the patients developed kidney failure from processing all the dead B-cells.
This was a rather technical blog post. I'll try not to write too many like this, though I love this kind of stuff (especially now).
Thursday, December 8, 2011
There's not much to report on me. I'm at the hospital for my weekly checkup. My white blood cell counts are up, and my neutrophil (bacteria-fighting cells) counts are all the way in the normal range, though at the very bottom.
I figured I'd report on Jerry, who is doing awesome! (Thank you for all your prayers.)
This is a very "newsy" post today, so I figured I'd put you in a leisure mood first. Brian Regan is doing commercials now!
Okay, done with that.
Today is day 8 for him, which means he's on the eighth day after his transplant. He looks great, and he even went to WalMart yesterday (something I have no intention of doing when I'm in his shoes). He insisted that he dodges groups of people, that he moves far away if he hears someone cough or sneeze, and that he doesn't touch anything or even open any doors. And he wears a hospital mask, of course.
The chemo has not yet completely wiped out his blood counts, despite the fact that he's 8 days past transplant. They're getting low, around 2.0 for a white blood cell count, but they're not zero. So I can't say he has no immune system, but his immune system is low and decreasing, not increasing. Also, he's on immunosuppressive drugs, several of them, to make sure that the stem cells he received don't have to fight his old immune system in order to rebuild his bone marrow and create a new immune system.
That's all to say that if he contacts germs, he's going to get sick.
I would just avoid WalMart.
But for Jerry, so far so good. Like I said, he looks great. It's very encouraging for me.
I saw Dr. Jagasia, the head of the stem cell transplant department, at the hospital while he was seeing Jerry and I was visiting Jerry. He told me that I probably wouldn't need another spinal tap. When I told him that seeing Jerry was encouraging me, he said, "Well, you're not getting the same kind of transplant."
Now, when I started that last paragraph, I thought he meant that I was getting cord blood, while Jerry got marrow from his brother. However, though only a few seconds have passed for you since the last paragraph, several hours have passed for me. I started this blog at the hospital, thinking I would write it during my waiting periods. I had early appointments, though, starting at 7:00, so all my waiting periods were shorter than normal. I had to quit writing, and I'm now back home with more information than I had when I started the blog.
Among other things, we visited Jerry while we were at the hospital. He only found out yesterday that his chemo was reduced intensity. It was still intense chemotherapy, but it was not "fully myeloablative." In other words, it's not meant to completely wipe out his bone marrow. His brother's stem cells will have to take care of finishing off what's left.
So what Dr. Jagasia meant yesterday or the day before was that my chemo will be more intense than his. I'll be getting radiation as well. I hate it when the doctor basically says, "Don't get your hopes up."
That's all assuming they agree my heart's up to handling it when they check me next Wednesday.
My trip to the hospital this morning also means that I am no longer without any news.
But first, an intermission if you want one. Brian Regan colored his hair for this appearance on David Letterman, but it didn't stop him from being funny. Don't give up on the first minute. It gets better steadily as it goes along.
Perhaps you've now noticed that I think Brian Regan is funny. Back to other news.
Today I gave a couple small pieces of skin to Vanderbilt's pathology department. I got ringworm on my arm last week, probably from going to the apartment's weight room. We put some antifungal cream on it, to go with the antifungal pill I was already taking, and it disappeared. But I also have some spots on my legs that don't look the same as the ringworm that was on my arm. There's fifteen or so. The tiny ones are round, but the bigger ones, up to a half inch wide and almost an inch long, are more oval and not very even on the edges. They also don't look like ringworm. They just look like dried skin, a little scaly and a little darker than the surrounding skin. They don't itch or hurt. I'd never know they were there if I couldn't see them.
Dr. Strickland told me it looks a little like eczema, but it's really hard to determine the cause of a rash. I have my transplant preparation tests next week, though, so we can't leave it undetermined. So we had his nurse take a couple biopsies to send to the pathology lab.
Rash is a somewhat common side effect of the Cytarabine chemotherapy I had at the end of October. He also told me to change my body wash, in case it's an allergic reaction.
Speaking of Cytarabine, I looked up "high dose" Cytarabine in Google, and I found numerous studies where people had received 2000 or 3000 mg/m2 twice a day for four days. They called this "high dose." I couldn't find any descriptions of Cytarabine being administered at higher doses.
I got 6000 mg/m2 twice a day for six days.
No wonder my blood counts recovered so slowly!
They're trying to prevent relapse, something I appreciate. Dr. Strickland assured me a couple weeks ago that I'm not the only person who's received that high a dose.
Well, back to Rose Creek Village for the weekend. There's a wedding on Sunday we're looking forward to being at. Then I visit with the transplant doctor and nurse practitioner on Tuesday, then all the heart tests on Wednesday. It may be Wednesday before I blog again.
Have a great weekend and a merry Christmas!
I figured I'd report on Jerry, who is doing awesome! (Thank you for all your prayers.)
This is a very "newsy" post today, so I figured I'd put you in a leisure mood first. Brian Regan is doing commercials now!
Okay, done with that.
Today is day 8 for him, which means he's on the eighth day after his transplant. He looks great, and he even went to WalMart yesterday (something I have no intention of doing when I'm in his shoes). He insisted that he dodges groups of people, that he moves far away if he hears someone cough or sneeze, and that he doesn't touch anything or even open any doors. And he wears a hospital mask, of course.
The chemo has not yet completely wiped out his blood counts, despite the fact that he's 8 days past transplant. They're getting low, around 2.0 for a white blood cell count, but they're not zero. So I can't say he has no immune system, but his immune system is low and decreasing, not increasing. Also, he's on immunosuppressive drugs, several of them, to make sure that the stem cells he received don't have to fight his old immune system in order to rebuild his bone marrow and create a new immune system.
That's all to say that if he contacts germs, he's going to get sick.
I would just avoid WalMart.
But for Jerry, so far so good. Like I said, he looks great. It's very encouraging for me.
I saw Dr. Jagasia, the head of the stem cell transplant department, at the hospital while he was seeing Jerry and I was visiting Jerry. He told me that I probably wouldn't need another spinal tap. When I told him that seeing Jerry was encouraging me, he said, "Well, you're not getting the same kind of transplant."
Now, when I started that last paragraph, I thought he meant that I was getting cord blood, while Jerry got marrow from his brother. However, though only a few seconds have passed for you since the last paragraph, several hours have passed for me. I started this blog at the hospital, thinking I would write it during my waiting periods. I had early appointments, though, starting at 7:00, so all my waiting periods were shorter than normal. I had to quit writing, and I'm now back home with more information than I had when I started the blog.
Among other things, we visited Jerry while we were at the hospital. He only found out yesterday that his chemo was reduced intensity. It was still intense chemotherapy, but it was not "fully myeloablative." In other words, it's not meant to completely wipe out his bone marrow. His brother's stem cells will have to take care of finishing off what's left.
So what Dr. Jagasia meant yesterday or the day before was that my chemo will be more intense than his. I'll be getting radiation as well. I hate it when the doctor basically says, "Don't get your hopes up."
That's all assuming they agree my heart's up to handling it when they check me next Wednesday.
My trip to the hospital this morning also means that I am no longer without any news.
But first, an intermission if you want one. Brian Regan colored his hair for this appearance on David Letterman, but it didn't stop him from being funny. Don't give up on the first minute. It gets better steadily as it goes along.
Perhaps you've now noticed that I think Brian Regan is funny. Back to other news.
Today I gave a couple small pieces of skin to Vanderbilt's pathology department. I got ringworm on my arm last week, probably from going to the apartment's weight room. We put some antifungal cream on it, to go with the antifungal pill I was already taking, and it disappeared. But I also have some spots on my legs that don't look the same as the ringworm that was on my arm. There's fifteen or so. The tiny ones are round, but the bigger ones, up to a half inch wide and almost an inch long, are more oval and not very even on the edges. They also don't look like ringworm. They just look like dried skin, a little scaly and a little darker than the surrounding skin. They don't itch or hurt. I'd never know they were there if I couldn't see them.
Dr. Strickland told me it looks a little like eczema, but it's really hard to determine the cause of a rash. I have my transplant preparation tests next week, though, so we can't leave it undetermined. So we had his nurse take a couple biopsies to send to the pathology lab.
Rash is a somewhat common side effect of the Cytarabine chemotherapy I had at the end of October. He also told me to change my body wash, in case it's an allergic reaction.
Speaking of Cytarabine, I looked up "high dose" Cytarabine in Google, and I found numerous studies where people had received 2000 or 3000 mg/m2 twice a day for four days. They called this "high dose." I couldn't find any descriptions of Cytarabine being administered at higher doses.
I got 6000 mg/m2 twice a day for six days.
No wonder my blood counts recovered so slowly!
They're trying to prevent relapse, something I appreciate. Dr. Strickland assured me a couple weeks ago that I'm not the only person who's received that high a dose.
Well, back to Rose Creek Village for the weekend. There's a wedding on Sunday we're looking forward to being at. Then I visit with the transplant doctor and nurse practitioner on Tuesday, then all the heart tests on Wednesday. It may be Wednesday before I blog again.
Have a great weekend and a merry Christmas!
Friday, December 2, 2011
Don't Judge a Book by Its Cover
Meghan, the hematology nurse practitioner, called me this morning to tell me that both of the last two spinal taps are confirmed clear (no abnormal cells).
I wanted to write this blog Wednesday evening after the spinal tap, but I've been feeling so much better that I took on the project of reorganizing my Christian history site instead. (If you go there, the reorganization is really only started. You'll see a new Navigation menu, but not too much else is different except the "Teachings" section.)
Wednesday I went into the hospital much more relaxed than I have for the last several spinal taps. Thank you for your prayers, as that's the only explanation I have for the difference.
Prior to the spinal tap, I had my blood counts checked and saw the nurse. I usually do that twice a week, but only once this week. It takes about two hours, though there's only about 15 minutes of activity in that time. I go to the hospital and wait for paperwork for about 5 minutes. They give me the paperwork and verify my contact information. Then I wait 15 to 30 minutes to be called into the lab. There they take about 2 minutes to draw my blood. Then I go to hematology and wait about 5 minutes to be called for blood pressure and other vital signs. Then I get put in a room to wait for 45 minutes to an hour before I see Meghan for 5 to 10 minutes. The wait in the room allows my blood counts to come back from the lab before Meghan checks me over for mouth sores and swollen lymph glands and things like that.
My lovely and patient wife endures all this waiting with me. It's nice time together. In the waiting rooms we talk. In the little room for an hour, we sometimes play "Words with Friends" on our iPhones together.
Because there's all that waiting involved, I didn't go straight from the lab to hematology. Jerry was getting the stem cells from his brother, and we wanted to see them.
After my blood was drawn we put on masks, washed our hands, and went to Jerry's room bearing gifts.
Jerry had told us that "day zero," the day on which you get your stem cell transplant is your new birthday, according to the nurses. So Tuesday night my wife and I went to the store for a couple helium balloons and a birthday card.
Have you ever went to the store and felt like you really hit the jackpot?
We did. My wife found "Zero" candy bars. She bought one for Dump, who donated the cells, and one for Jerry, who was getting them.
Then, she found a card with a picture of a bunch of Labrador Retriever puppies. They all had caption bubbles saying things like "Well done!" and "Very good!" Inside, the card said, "The lab results are in. You did great!" We got that one for Dump.
Understand, Dump endured a week of weakness, feeling bloated, and aches and pains in his bones bad enough that Alleve, the only pain reliever he was allowed to take, didn't help. We had to pray for him so he could get sleep at night, and the nurses told him most of those symptoms will last two more weeks. This is a small price to pay for your brother's life, in my opinion (and in Dump's), but it's a price.
So the card was perfect for him.
We were early, which turned out to be good. We broke into his room excited, wishing him happy birthday and handing out the balloons and candy bars. It was great fun, and my wife told me she saw a tear in Dump's eye, which was very rewarding. (I don't think Dump reads my blog, so I'm mentioning it.)
You might as well go into your new life excited, especially when you have an incredibly difficult, life-threatening two to three week battle in front of you, followed by a less difficult, more comfortable, and almost as life-threatening three month battle after.
You've probably heard the phrase, "Those are good people." The more we get to know Jerry, Dump, and their wives, the more we would say that. They are such a joy.
Oh, and the reason it turned out to be good that we were early is that we came back again after I saw the nurse. We took a risk of being a little late to radiology so we could see Jerry actually getting Dump's stem cells, which the nurse had called "the prettiest batch of cells she'd ever seen."
The cells were pink, but with no other stem cells to compare them to, I can't say whether they were pretty.
Jerry, however, looked awful. He was very red, and he seemed barely awake. His wife, Rayetta, told us he was feeling nauseous, too. Apparently, the anti-rejection medicines (which are primarily to prevent the transplant from rejecting him and attacking his body, not him from rejecting the transplant) are very rough on him. I was glad we'd seen him an hour or two earlier.
Okay, two stories.
When I finally got to my spinal tap, I was still feeling unusually relaxed.
Then the doctor came in.
It looked like they'd grabbed one of the homeless guys from one of Nashville's street corners, dressed him in scrubs—which didn't make him look any less homeless—and sent him in to do the spinal tap. He then gave me the least polished warning about side effects that I've received and left me with the consent sheet to read and sign. Only he didn't leave me a pen.
Panic began to well up in my chest.
I took a deep breath, asked for a pen, and purposely remembered my reaction to the nurse who did my third marrow biopsy, about three months ago. In a previous appointment I had become worried that she was clumsy and less than professional, but it turned out that she was awesome at giving marrow biopsies. She was quick, accurate (no fishing around to try and get marrow), and gentle.
As I laid down on the table, I thought, "Don't judge a book by its cover."
At the side of the room, I heard the nurse ask, "He said he gets headaches. Does that mean you want to use the #22 needle?"
"No," he said. "Let's use the 20 ... well, let's do 21."
I knew what that meant from the last time. Smaller numbers are bigger needles, and the bigger the needle the more likely you are to leak fluid after the spinal tap. Leaking fluid is what leads to headaches, and low spinal fluid headaches are brutal.
The last doctor I had, who was 10 or 15 years younger than this one, had told me that I was listed as a "slow dripper." It's hard to get the spinal fluid out of my spine and into the syringe. That calls for a larger needle or a very long wait to get all the fluid. That doctor, however, had opted for the smallest possible needle anyway. He told me that he'd surveyed patients, and they'd all said they prefer an extra 10 minutes on the table to headaches after the procedure.
This doctor apparently didn't think that was a good idea.
Just before he came to the table, I heard him whisper to the nurse, "You know what, let's do twenty ... "
His whisper trailed off at the end. I couldn't tell whether he'd just gone from 21 to 20 or from 21 to 22.
Sigh.
I took a deep breath and tried to relax.
It wasn't a problem. I really have been thinking about the things I wrote in my last post. God's in control, not me. And, "don't judge a book by its cover!"
Except the "stick and a burn" that is unavoidable when they give you surface anesthetic, I never felt a thing, which is the first time that's happened. I have always felt the needle going through the muscle sheath deep down near my spine. I know now, from where the Band-aid was afterward, that this doctor went in about three inches lower on my back than the others. Perhaps that was the difference.
The doctor was gentle, continually asked me how I was doing, and struck up a very pleasant conversation while we were waiting for me to drip the syringe full. He was very positive, and he loves his job and the people he works with. It was almost delightful.
Oh, and no headaches on Thursday. Laying around for six to eight hours after a spinal tap apparently works for me. I wish I'd known that the first time.
Dump told me that he met a guy at the hospital who asked him about everything he was going through as a donor. As it turned out, the man had a brother with leukemia, and he'd turned up as a match. Vanderbilt wanted to get the transplant from this man for his brother.
Dump told me that when the man asked him how he could have such a good attitude about going through all that discomfort, Dump was speechless. "Family's family," he thought. Dump couldn't even conceive of the idea of refusing to donate marrow stem cells, and he had no idea what to say to someone who would actually refuse to save his brother's life.
Shortly after, Dump ran into the wife of the brother with leukemia. She told Dump that it looked pretty certain that her brother-in-law was going to back out.
I don't even know how to wrap my brain around that.
The nurse told Dump and Jerry that they would be amazed how many siblings refuse to donate marrow. Usually, this means they go to the National Marrow Donor Program to find a stranger that is a match. Yeah, a stranger that cares more about the person than the sibling does.
Siblings, if they match on the important points in the DNA, are always a better option.
I won't comment further. I don't know what to say. What kind of person ... ?
Well, I said I wouldn't comment.
Maybe I should have put that story in the middle and followed it with something positive. I hope you have a great day anyway.
I wanted to write this blog Wednesday evening after the spinal tap, but I've been feeling so much better that I took on the project of reorganizing my Christian history site instead. (If you go there, the reorganization is really only started. You'll see a new Navigation menu, but not too much else is different except the "Teachings" section.)
 |
| These ladies ran a half marathon on my behalf |
Prior to the spinal tap, I had my blood counts checked and saw the nurse. I usually do that twice a week, but only once this week. It takes about two hours, though there's only about 15 minutes of activity in that time. I go to the hospital and wait for paperwork for about 5 minutes. They give me the paperwork and verify my contact information. Then I wait 15 to 30 minutes to be called into the lab. There they take about 2 minutes to draw my blood. Then I go to hematology and wait about 5 minutes to be called for blood pressure and other vital signs. Then I get put in a room to wait for 45 minutes to an hour before I see Meghan for 5 to 10 minutes. The wait in the room allows my blood counts to come back from the lab before Meghan checks me over for mouth sores and swollen lymph glands and things like that.
My lovely and patient wife endures all this waiting with me. It's nice time together. In the waiting rooms we talk. In the little room for an hour, we sometimes play "Words with Friends" on our iPhones together.
Because there's all that waiting involved, I didn't go straight from the lab to hematology. Jerry was getting the stem cells from his brother, and we wanted to see them.
After my blood was drawn we put on masks, washed our hands, and went to Jerry's room bearing gifts.
Jerry had told us that "day zero," the day on which you get your stem cell transplant is your new birthday, according to the nurses. So Tuesday night my wife and I went to the store for a couple helium balloons and a birthday card.
Have you ever went to the store and felt like you really hit the jackpot?
We did. My wife found "Zero" candy bars. She bought one for Dump, who donated the cells, and one for Jerry, who was getting them.
Then, she found a card with a picture of a bunch of Labrador Retriever puppies. They all had caption bubbles saying things like "Well done!" and "Very good!" Inside, the card said, "The lab results are in. You did great!" We got that one for Dump.
Understand, Dump endured a week of weakness, feeling bloated, and aches and pains in his bones bad enough that Alleve, the only pain reliever he was allowed to take, didn't help. We had to pray for him so he could get sleep at night, and the nurses told him most of those symptoms will last two more weeks. This is a small price to pay for your brother's life, in my opinion (and in Dump's), but it's a price.
So the card was perfect for him.
 |
| A great picture of Alaina at the half marathon |
You might as well go into your new life excited, especially when you have an incredibly difficult, life-threatening two to three week battle in front of you, followed by a less difficult, more comfortable, and almost as life-threatening three month battle after.
You've probably heard the phrase, "Those are good people." The more we get to know Jerry, Dump, and their wives, the more we would say that. They are such a joy.
Oh, and the reason it turned out to be good that we were early is that we came back again after I saw the nurse. We took a risk of being a little late to radiology so we could see Jerry actually getting Dump's stem cells, which the nurse had called "the prettiest batch of cells she'd ever seen."
The cells were pink, but with no other stem cells to compare them to, I can't say whether they were pretty.
Jerry, however, looked awful. He was very red, and he seemed barely awake. His wife, Rayetta, told us he was feeling nauseous, too. Apparently, the anti-rejection medicines (which are primarily to prevent the transplant from rejecting him and attacking his body, not him from rejecting the transplant) are very rough on him. I was glad we'd seen him an hour or two earlier.
Okay, two stories.
Don't Judge a Book by Its Cover
When I finally got to my spinal tap, I was still feeling unusually relaxed.
Then the doctor came in.
It looked like they'd grabbed one of the homeless guys from one of Nashville's street corners, dressed him in scrubs—which didn't make him look any less homeless—and sent him in to do the spinal tap. He then gave me the least polished warning about side effects that I've received and left me with the consent sheet to read and sign. Only he didn't leave me a pen.
Panic began to well up in my chest.
I took a deep breath, asked for a pen, and purposely remembered my reaction to the nurse who did my third marrow biopsy, about three months ago. In a previous appointment I had become worried that she was clumsy and less than professional, but it turned out that she was awesome at giving marrow biopsies. She was quick, accurate (no fishing around to try and get marrow), and gentle.
As I laid down on the table, I thought, "Don't judge a book by its cover."
At the side of the room, I heard the nurse ask, "He said he gets headaches. Does that mean you want to use the #22 needle?"
"No," he said. "Let's use the 20 ... well, let's do 21."
I knew what that meant from the last time. Smaller numbers are bigger needles, and the bigger the needle the more likely you are to leak fluid after the spinal tap. Leaking fluid is what leads to headaches, and low spinal fluid headaches are brutal.
The last doctor I had, who was 10 or 15 years younger than this one, had told me that I was listed as a "slow dripper." It's hard to get the spinal fluid out of my spine and into the syringe. That calls for a larger needle or a very long wait to get all the fluid. That doctor, however, had opted for the smallest possible needle anyway. He told me that he'd surveyed patients, and they'd all said they prefer an extra 10 minutes on the table to headaches after the procedure.
This doctor apparently didn't think that was a good idea.
Just before he came to the table, I heard him whisper to the nurse, "You know what, let's do twenty ... "
His whisper trailed off at the end. I couldn't tell whether he'd just gone from 21 to 20 or from 21 to 22.
Sigh.
I took a deep breath and tried to relax.
It wasn't a problem. I really have been thinking about the things I wrote in my last post. God's in control, not me. And, "don't judge a book by its cover!"
Except the "stick and a burn" that is unavoidable when they give you surface anesthetic, I never felt a thing, which is the first time that's happened. I have always felt the needle going through the muscle sheath deep down near my spine. I know now, from where the Band-aid was afterward, that this doctor went in about three inches lower on my back than the others. Perhaps that was the difference.
The doctor was gentle, continually asked me how I was doing, and struck up a very pleasant conversation while we were waiting for me to drip the syringe full. He was very positive, and he loves his job and the people he works with. It was almost delightful.
Oh, and no headaches on Thursday. Laying around for six to eight hours after a spinal tap apparently works for me. I wish I'd known that the first time.
Sorry, Big Brother, I Guess You're Gonna Die
Dump told me that he met a guy at the hospital who asked him about everything he was going through as a donor. As it turned out, the man had a brother with leukemia, and he'd turned up as a match. Vanderbilt wanted to get the transplant from this man for his brother.
Dump told me that when the man asked him how he could have such a good attitude about going through all that discomfort, Dump was speechless. "Family's family," he thought. Dump couldn't even conceive of the idea of refusing to donate marrow stem cells, and he had no idea what to say to someone who would actually refuse to save his brother's life.
Shortly after, Dump ran into the wife of the brother with leukemia. She told Dump that it looked pretty certain that her brother-in-law was going to back out.
I don't even know how to wrap my brain around that.
The nurse told Dump and Jerry that they would be amazed how many siblings refuse to donate marrow. Usually, this means they go to the National Marrow Donor Program to find a stranger that is a match. Yeah, a stranger that cares more about the person than the sibling does.
Siblings, if they match on the important points in the DNA, are always a better option.
I won't comment further. I don't know what to say. What kind of person ... ?
Well, I said I wouldn't comment.
Maybe I should have put that story in the middle and followed it with something positive. I hope you have a great day anyway.
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