Sunday, August 29, 2010
Wednesday, August 25, 2010
"Stick a fork in me: I'm done!" Or: "I should watch how I title my blog entries: for all I know, that test is going to be scheduled next week."
Here's what I did today: 9 a.m. blood draw (boring), 9:30 a.m dental consult (need a cleaning and keep flossing, standard dental advice), 10:30 pharmacist consult ("here are the 45 pills a day you will be taking post-transplant and their horrible side effects! And here is a free day-of-the week box to keep them in!"), 11:15 gynecologist (no explanation needed or desired, I'm sure), 12:30 nutritionist consult ("you already do everything right, how did you end up with cancer?"), 2:20 mammogram (add what goes on in those to my personal House of Horrors), 3:00 dressing change and cleaning on the port installed in my arm (stung like crazy). Because I was so good for all my appointments, they are letting me have a day off tomorrow. Ok, I actually have no idea why I have a day off tomorrow. In any case, we're going to the aquarium. I feel quite comfortable going there with my 720 lousy neutrophils. Then, we are going to storm the new apartment and take it by force. I am only half kidding.
♥
♥
Tuesday, August 24, 2010
Meet Laika
Skip this post if you're in the mood for humorous meanderings. I'm getting down to business here.
It's time for you all to learn exactly what's going on in this transplant, so pay attention. A bone marrow transplant is not exactly a transplant of the marrow (the spongy stuff itself), it is a transplant of the aspirate, or the blood and gunk inside the marrow that creates the marrow and blood cells. Used to be they would collect aspirate from the donor for transplant, which involved drilling into the donor's back, but nowadays they usually just collect the stem cells that make all that stuff right out of the blood stream via IV, or they filter them out of umbilical cords (after the baby is done using it, of course. I am not being infused with fetuses as some would have you believe).
Anyway, it goes like this: First, the recipient has their own marrow and cells destroyed by super high doses of chemotherapy and radiation (for me, 3 days of chemo and 4 of total body radiation, plus potentially another 5 days of cranio-spinal radiation). Then, the recipient is infused intravenously with the harvested stem cells from the donor, just like a blood transfusion through a slightly wider-than-normal central line. It takes about an hour and is, I'm told, anticlimactic. The stem cells cruise around for awhile, then set up shop in the marrow, and go right back to rebuilding the marrow and creating the blood cells. This takes about 10 days to 2 weeks. In that 2-week period, the transplant recipient has no blood cells at all and is totally dependent on transfusions of red blood and platelets and completely susceptible to infection because there are no white blood cells. Not to mention coping with the side effects of the chemo and radiation, which are nasty. It's during this period when most of the transplant-related mortality happens, a number that is a good deal higher than one awaiting transplant would hope.
When the transplant is from cord cells, there are fewer stem cells than from an adult donation, so it takes longer for them to produce enough blood cells to fuel a viable human being. Adults have to be infused with 2 cords to begin with so there is a somewhat reasonable number of cells, but is still in that vulnerable state for up to 4 weeks or more, increasing the risk of transplant-related mortality significantly. However, one of the benefits of cord transplants is that there seems to be less chance of leukemia relapse in the future than in with adult stem cell transplants. Some hypothesize is has something to do with the competition between the 2 cords (as only one actually engrafts, and the other disappears).
In case you have been skimming STOP SKIMMING here because I'm getting to the whole point of this little lesson. Part of the benefit of being here in Seattle is the research they are doing on cord blood transplants. In one clinical trial, the researchers have figured out a way to "grow" more stem cells from one of the cords on a substrate before transplant, increasing their number by up to 150-fold, and cutting post-transplant recovery time in half. The unexpanded cord is somehow always the one that engrafts, however, eliminating the cord competition. Which led to another idea: implant with 2 normal cords for the competition (to prevent relapse) and one expanded cell to shorten recovery. This is protocol I am pursuing, and if insurance approves it, I'll be the first person to participate in this clinical trial. How completely insane am I? The researcher told me her plan and rationale, and I don't know what was wrong with me, but it sounded great. Sure, I'll be your space monkey! Still sounds like a great idea, even to my uber-skeptical mind. Strange how I have always wondered how they find the first person to try all this stuff. I thought they were probably duped (hence the title of my post; in case anyone gets it). But its really just about finding a better way.
In other news, Luna has a virus and my transplant team is going to kill me if I catch it and delay my transplant, which is only a couple of weeks away. My cerebral spinal fluid is clear, no leukemia cells. All my other test results are good and normal so far, but I still have a lot to go. And something like a million of them are tomorrow. Oh, and see this view?
I had to get to my appointment a HALF AN HOUR early to enjoy this view but I got about 10 minutes in that chair, for Pete's sake.
Sorry this one was boring, but that's the color of things these days. Although we've had a great time hanging out with our friends Jen and Mike who just moved here, and Rosa who is visiting. I could tell you about how the move to the bigger apartment was greatly delayed, but Brett might grab my computer and throw it out the window if I do. So all I have left is: good night! xo
It's time for you all to learn exactly what's going on in this transplant, so pay attention. A bone marrow transplant is not exactly a transplant of the marrow (the spongy stuff itself), it is a transplant of the aspirate, or the blood and gunk inside the marrow that creates the marrow and blood cells. Used to be they would collect aspirate from the donor for transplant, which involved drilling into the donor's back, but nowadays they usually just collect the stem cells that make all that stuff right out of the blood stream via IV, or they filter them out of umbilical cords (after the baby is done using it, of course. I am not being infused with fetuses as some would have you believe).
Anyway, it goes like this: First, the recipient has their own marrow and cells destroyed by super high doses of chemotherapy and radiation (for me, 3 days of chemo and 4 of total body radiation, plus potentially another 5 days of cranio-spinal radiation). Then, the recipient is infused intravenously with the harvested stem cells from the donor, just like a blood transfusion through a slightly wider-than-normal central line. It takes about an hour and is, I'm told, anticlimactic. The stem cells cruise around for awhile, then set up shop in the marrow, and go right back to rebuilding the marrow and creating the blood cells. This takes about 10 days to 2 weeks. In that 2-week period, the transplant recipient has no blood cells at all and is totally dependent on transfusions of red blood and platelets and completely susceptible to infection because there are no white blood cells. Not to mention coping with the side effects of the chemo and radiation, which are nasty. It's during this period when most of the transplant-related mortality happens, a number that is a good deal higher than one awaiting transplant would hope.
When the transplant is from cord cells, there are fewer stem cells than from an adult donation, so it takes longer for them to produce enough blood cells to fuel a viable human being. Adults have to be infused with 2 cords to begin with so there is a somewhat reasonable number of cells, but is still in that vulnerable state for up to 4 weeks or more, increasing the risk of transplant-related mortality significantly. However, one of the benefits of cord transplants is that there seems to be less chance of leukemia relapse in the future than in with adult stem cell transplants. Some hypothesize is has something to do with the competition between the 2 cords (as only one actually engrafts, and the other disappears).
In case you have been skimming STOP SKIMMING here because I'm getting to the whole point of this little lesson. Part of the benefit of being here in Seattle is the research they are doing on cord blood transplants. In one clinical trial, the researchers have figured out a way to "grow" more stem cells from one of the cords on a substrate before transplant, increasing their number by up to 150-fold, and cutting post-transplant recovery time in half. The unexpanded cord is somehow always the one that engrafts, however, eliminating the cord competition. Which led to another idea: implant with 2 normal cords for the competition (to prevent relapse) and one expanded cell to shorten recovery. This is protocol I am pursuing, and if insurance approves it, I'll be the first person to participate in this clinical trial. How completely insane am I? The researcher told me her plan and rationale, and I don't know what was wrong with me, but it sounded great. Sure, I'll be your space monkey! Still sounds like a great idea, even to my uber-skeptical mind. Strange how I have always wondered how they find the first person to try all this stuff. I thought they were probably duped (hence the title of my post; in case anyone gets it). But its really just about finding a better way.
In other news, Luna has a virus and my transplant team is going to kill me if I catch it and delay my transplant, which is only a couple of weeks away. My cerebral spinal fluid is clear, no leukemia cells. All my other test results are good and normal so far, but I still have a lot to go. And something like a million of them are tomorrow. Oh, and see this view?
I had to get to my appointment a HALF AN HOUR early to enjoy this view but I got about 10 minutes in that chair, for Pete's sake.
Sorry this one was boring, but that's the color of things these days. Although we've had a great time hanging out with our friends Jen and Mike who just moved here, and Rosa who is visiting. I could tell you about how the move to the bigger apartment was greatly delayed, but Brett might grab my computer and throw it out the window if I do. So all I have left is: good night! xo
Friday, August 20, 2010
Rollercoastering
I'll try to keep it short and painless since its Friday night. There are only 3 things to mention about today, if I don't ramble aimlessly as per usual.
1. The biopsy I mentioned yesterday? That I was pretty sure was going to come back as 456% leukemic cells? Came back as 0%. That's the first time that has happened, and we can kind of breathe a sigh of relief that I probably won't relapse before transplant. Yes, that is good news. But, being half Irish, I don't dwell on good news, I move on to the next thing to worry about which in this case is
2. My absolute neutrophil count (ANC) has dropped a little, or a lot, from its already-low level. Neutrophils are the component of your white blood cells (WBC) that fight infection. Normal levels are about 4000-7000. At a level of 500 or less, one has virtually no immune system, thus no ability to fight an infection. One also tends to get random fevers and wind up in the hospital for a week like some cancer patients I know. Mine are currently at 650. Meaning: I am pretty immuno-suppressed (you know how on the news they tell you about the latest megavirus outbreak or what have you and they say "Sensitive groups should..." Well, that's me). Again, the doctors are not worried since my other counts are going up and they claim that eventually this will too. The also say, "this shows how well the chemo worked this time." And that all I have to do is be super-diligent for the moment about avoiding infections by frequent hand-washing and avoiding crowded places. They were probably kind of thinking about places like the one I was at this morning:
3. Which is Pike's Market. But I didn't know I was severely immuno-suppressed at the time! I thought I had like 1000 neutrophils to toss around as I pleased. My nurse told me today that yesterday's count was 650. For all I know, I don't have any neutrophils at all today and I owe my life to Purel. However, even with my delusions of 1000 neutrophils, I wasn't entirely comfortable with the crowds at the market, to say nothing of the fish carcasses winging through the air. So we moved on to enjoy quieter times at the Olympic Sculpture Garden Park:
.JPG)
Hoping those neutrophils get off their lazy keisters in the next couple days.
Have a great weekend. Love, love, love,
~jessie
1. The biopsy I mentioned yesterday? That I was pretty sure was going to come back as 456% leukemic cells? Came back as 0%. That's the first time that has happened, and we can kind of breathe a sigh of relief that I probably won't relapse before transplant. Yes, that is good news. But, being half Irish, I don't dwell on good news, I move on to the next thing to worry about which in this case is
2. My absolute neutrophil count (ANC) has dropped a little, or a lot, from its already-low level. Neutrophils are the component of your white blood cells (WBC) that fight infection. Normal levels are about 4000-7000. At a level of 500 or less, one has virtually no immune system, thus no ability to fight an infection. One also tends to get random fevers and wind up in the hospital for a week like some cancer patients I know. Mine are currently at 650. Meaning: I am pretty immuno-suppressed (you know how on the news they tell you about the latest megavirus outbreak or what have you and they say "Sensitive groups should..." Well, that's me). Again, the doctors are not worried since my other counts are going up and they claim that eventually this will too. The also say, "this shows how well the chemo worked this time." And that all I have to do is be super-diligent for the moment about avoiding infections by frequent hand-washing and avoiding crowded places. They were probably kind of thinking about places like the one I was at this morning:
3. Which is Pike's Market. But I didn't know I was severely immuno-suppressed at the time! I thought I had like 1000 neutrophils to toss around as I pleased. My nurse told me today that yesterday's count was 650. For all I know, I don't have any neutrophils at all today and I owe my life to Purel. However, even with my delusions of 1000 neutrophils, I wasn't entirely comfortable with the crowds at the market, to say nothing of the fish carcasses winging through the air. So we moved on to enjoy quieter times at the Olympic Sculpture Garden Park:
.JPG)
Hoping those neutrophils get off their lazy keisters in the next couple days.
Have a great weekend. Love, love, love,
~jessie
Thursday, August 19, 2010
Second post...but don't get all excited
I still reserve the right to completely flake out at any time.
My last 2 days have been packed, I mean wall to wall packed with appointments between about 10 or 11 and 4. Which isn't really that bad since I'm home early, but is exhausting considering they cram 5 or 6 appointments in each day. Pulmonary function test, EKG, blood draws, financial consults... Yesterday's highlight was the "Why the F- would anyone do this" conference, otherwise known as the Informed Consent conference. This is where the good doctor goes over your treatment plan and cheerily lists off every possible side effect of the whole procedure, about 80% of which "could be fatal! That is, unless you're lucky enough to simply have a chronic condition the rest of your life!" And I'm like, "Sounds fantastic! Where do I sign?" That's the way it goes when you have no. other. treatment. choice. and a fatal disease that will most certainly come back in a few months with no treatment at all. So I don't really need the "WTFWADT" conference. All it does is freak me out, and anyway, what could they possibly tell me that would make me change my mind? Only that they planned on surgically removing each bone individually, replacing the marrow with a butter knife, and then surgically re-implanting it. And even then I'd be like, "Let me have another look at those forms..."
SO...back to back to back appointments and we are practically running between them. And everyone is completely efficient and on time and let me tell you I am totally annoyed by the well-oiled machinery of this place! No time to read my book, the newspaper, play with my phone, or even gaze blankly out at Lake Union for Pete's sake. And if you are early, they're like, "Hey, I bet we can get you in early!" And they can! The waiting room on the Transplant Floor is this semi-circle of floor-to-ceiling windows overlooking Lake Union from the 6th floor. And they have these cushy reclining chairs right at the windows facing the view so you can leisurely watch the seaplanes land on the lake. Or nap. Have I been able to partake of this luxury? Hardly.
Today's highlight was my bone marrow biopsy (you can Google the procedure if you want; this one they only took a sample of the fluid from my marrow, so technically it is a bone marrow aspirate. This was my 6th one of these. You can count them by the scars on my back below my bird tattoo). The biopsy is important, as it's the only way to determine how much leukemia I have in my marrow. For some people, chemotherapy gets them down to none, no detectable leukemia cells. For me, they've gotten me down to very few, but I've always had some...between 4 and 2% abnormal cells. Now, they still consider this remission (anything less than 5%), but I have no idea why anyone is comfortable with it. I feel as though if there are a few, they could easily shoot up to 58% tomorrow and then where would we be? Back to new and exciting kinds of chemo and a delayed transplant, that's where. The doctors don't act that way though, and I suppose that I am expected to go along with them. Anyway, we should get those results on Monday, so I'll be a little worried until then. Also, any typos you see here are from the Fentanyl lollipop I had before the biopsy.
Today I also had a MUGA, a heart test which is not very exciting except that I get a card afterward indicating that I will be radioactive for 3 days, and I am to show this card if I board any airplanes or ferries. How embarrassing.
Also, Luna and Jo arrived yesterday! Now we can see how dysfunctional this "suite" really is. We all have to go to sleep when Luna does and get up when she does. We eat on the floor. I like to pretend it's tribal and it makes it kind of fun. Except for the Luna-sized mini fridge that she likes to open and close and open and close and open and close and open and close and open and close and oh my Lord we need to get into that apartment already.
Love to all, xoxo!
~jessie
My last 2 days have been packed, I mean wall to wall packed with appointments between about 10 or 11 and 4. Which isn't really that bad since I'm home early, but is exhausting considering they cram 5 or 6 appointments in each day. Pulmonary function test, EKG, blood draws, financial consults... Yesterday's highlight was the "Why the F- would anyone do this" conference, otherwise known as the Informed Consent conference. This is where the good doctor goes over your treatment plan and cheerily lists off every possible side effect of the whole procedure, about 80% of which "could be fatal! That is, unless you're lucky enough to simply have a chronic condition the rest of your life!" And I'm like, "Sounds fantastic! Where do I sign?" That's the way it goes when you have no. other. treatment. choice. and a fatal disease that will most certainly come back in a few months with no treatment at all. So I don't really need the "WTFWADT" conference. All it does is freak me out, and anyway, what could they possibly tell me that would make me change my mind? Only that they planned on surgically removing each bone individually, replacing the marrow with a butter knife, and then surgically re-implanting it. And even then I'd be like, "Let me have another look at those forms..."
SO...back to back to back appointments and we are practically running between them. And everyone is completely efficient and on time and let me tell you I am totally annoyed by the well-oiled machinery of this place! No time to read my book, the newspaper, play with my phone, or even gaze blankly out at Lake Union for Pete's sake. And if you are early, they're like, "Hey, I bet we can get you in early!" And they can! The waiting room on the Transplant Floor is this semi-circle of floor-to-ceiling windows overlooking Lake Union from the 6th floor. And they have these cushy reclining chairs right at the windows facing the view so you can leisurely watch the seaplanes land on the lake. Or nap. Have I been able to partake of this luxury? Hardly.
Today's highlight was my bone marrow biopsy (you can Google the procedure if you want; this one they only took a sample of the fluid from my marrow, so technically it is a bone marrow aspirate. This was my 6th one of these. You can count them by the scars on my back below my bird tattoo). The biopsy is important, as it's the only way to determine how much leukemia I have in my marrow. For some people, chemotherapy gets them down to none, no detectable leukemia cells. For me, they've gotten me down to very few, but I've always had some...between 4 and 2% abnormal cells. Now, they still consider this remission (anything less than 5%), but I have no idea why anyone is comfortable with it. I feel as though if there are a few, they could easily shoot up to 58% tomorrow and then where would we be? Back to new and exciting kinds of chemo and a delayed transplant, that's where. The doctors don't act that way though, and I suppose that I am expected to go along with them. Anyway, we should get those results on Monday, so I'll be a little worried until then. Also, any typos you see here are from the Fentanyl lollipop I had before the biopsy.
Today I also had a MUGA, a heart test which is not very exciting except that I get a card afterward indicating that I will be radioactive for 3 days, and I am to show this card if I board any airplanes or ferries. How embarrassing.
Also, Luna and Jo arrived yesterday! Now we can see how dysfunctional this "suite" really is. We all have to go to sleep when Luna does and get up when she does. We eat on the floor. I like to pretend it's tribal and it makes it kind of fun. Except for the Luna-sized mini fridge that she likes to open and close and open and close and open and close and open and close and open and close and oh my Lord we need to get into that apartment already.
Love to all, xoxo!
~jessie
Tuesday, August 17, 2010
The blog I said I'd never write
Here it is. I can't promise you that this won't be the only entry I ever post, as generally I lack the consistency and willingness to talk about myself at length to carry on a reasonable blog. But I'm going to try. For the most part, I intend to chronicle what's going on day to day with my treatment, not necessarily fill the screen with my musings. But we'll see what happens.
So I called this blog "The Peculiar Vacation" because what should be fun and exciting trip to Seattle is actually a strange mix of "You must go to Pike's Place!" with "If your neutrophil count is high enough." Such has been my life for the past 5 months; it is just heightened here where I'm supposed to be riding around on the Space Needle between my appointments for bone marrow biopsies and radiology oncology consults. The local folk that I mostly encounter are also peculiar, in that they are not local, they are from somewhere else, and they are all sick like me. Not everyone has AML, and so far, no one has been especially chatty. However, we all stare at each other out of the corner of our eyes trying to figure out who are the patients and who are the caregivers, what kind of cancer each other has, where the patients are in their treatment, and things like "How tragic, he/she is so much older/younger than me, and Hey! His/her hair is so much longer/shorter than mine or is that a wig?"
Anyway, here's the brass tacks. I'm at the Fred Hutchinson Cancer Research Center, which people in the know call "the Hutch." I started pre-transplant appointments with endless blood draws and a dressing change for my port, then had a physical and consultation with my PA. My PA went over my entire case history with me, which was really really fun to re-live, and listened to my heart. Also checked liver and spleen size- which are apparently adequate. I learned that transplant date is tentative for mid-September. I'll find out soon if I need additional chemotherapy beforehand. Hopefully if I do, things won't get too delayed.
Then I had a consult with my nurse, who took my vitals and went over my schedule for the week. She's worked here 30 years and you can't beat that. We discussed drugs I liked and didn't like and things like that (I try not not talk about any of my drugs with too much enthusiasm lest she think I'm some kind of junky). She also listened to my heart.
When I'm at the clinic/hospital everyone that has ever come into the room with me since I've had this disease listens to my heart. I can have 3 or 4 people in a row do it. Sometime 2 people in the same room! I find it bizarre. Don't they know the last person did it? Aren't they even going to write something down? (They never do). Maybe it's about making physical contact. Or, avoiding an awkward silence or something.
Back to brass tacks: we are currently staying at the family suite at the SCCA House (owned by the Hutch) which is in fact not a suite at all but a giant room with an extra niche with a little bed in it and a fold out couch. The four of us will be crammed in here until our apartment at the Pete Gross House (also owned by the Hutch) is ready on Monday or Tuesday. Jo and Luna arrive tomorrow afternoon. I have clinic appointments every day between 11ish and 3 or 4ish. Today, Brett and I spent our non-clinic hours walking around the neighborhood. We walked up to Capitol Hill for Indian Food. It's like 90 degrees and sunny, and I bought a whole new bottle of sunscreen, which in reality was probably a little optimistic.
That's all I have for now. Going to bed, love to all :)
~jessie
So I called this blog "The Peculiar Vacation" because what should be fun and exciting trip to Seattle is actually a strange mix of "You must go to Pike's Place!" with "If your neutrophil count is high enough." Such has been my life for the past 5 months; it is just heightened here where I'm supposed to be riding around on the Space Needle between my appointments for bone marrow biopsies and radiology oncology consults. The local folk that I mostly encounter are also peculiar, in that they are not local, they are from somewhere else, and they are all sick like me. Not everyone has AML, and so far, no one has been especially chatty. However, we all stare at each other out of the corner of our eyes trying to figure out who are the patients and who are the caregivers, what kind of cancer each other has, where the patients are in their treatment, and things like "How tragic, he/she is so much older/younger than me, and Hey! His/her hair is so much longer/shorter than mine or is that a wig?"
Anyway, here's the brass tacks. I'm at the Fred Hutchinson Cancer Research Center, which people in the know call "the Hutch." I started pre-transplant appointments with endless blood draws and a dressing change for my port, then had a physical and consultation with my PA. My PA went over my entire case history with me, which was really really fun to re-live, and listened to my heart. Also checked liver and spleen size- which are apparently adequate. I learned that transplant date is tentative for mid-September. I'll find out soon if I need additional chemotherapy beforehand. Hopefully if I do, things won't get too delayed.
Then I had a consult with my nurse, who took my vitals and went over my schedule for the week. She's worked here 30 years and you can't beat that. We discussed drugs I liked and didn't like and things like that (I try not not talk about any of my drugs with too much enthusiasm lest she think I'm some kind of junky). She also listened to my heart.
When I'm at the clinic/hospital everyone that has ever come into the room with me since I've had this disease listens to my heart. I can have 3 or 4 people in a row do it. Sometime 2 people in the same room! I find it bizarre. Don't they know the last person did it? Aren't they even going to write something down? (They never do). Maybe it's about making physical contact. Or, avoiding an awkward silence or something.
Back to brass tacks: we are currently staying at the family suite at the SCCA House (owned by the Hutch) which is in fact not a suite at all but a giant room with an extra niche with a little bed in it and a fold out couch. The four of us will be crammed in here until our apartment at the Pete Gross House (also owned by the Hutch) is ready on Monday or Tuesday. Jo and Luna arrive tomorrow afternoon. I have clinic appointments every day between 11ish and 3 or 4ish. Today, Brett and I spent our non-clinic hours walking around the neighborhood. We walked up to Capitol Hill for Indian Food. It's like 90 degrees and sunny, and I bought a whole new bottle of sunscreen, which in reality was probably a little optimistic.
That's all I have for now. Going to bed, love to all :)
~jessie
Subscribe to:
Posts (Atom)