My sister has taken her blood test in Holland and it has been sent to The City of Hope, so hopefully in a week or so we’ll now if she’s a match! She’s actually visiting with her husband in 2 weeks for a couple of days, so we’re all really looking forward to that. Hopefully we’ll be able to pop a bottle of bubbly if she’s a match, otherwise we’ll just have to stick with Heineken!
In about a month from now we’ll be doing a blood test on me that also gets sent to the City of Hope for analysis (the technical name has momentarily escaped me), and they should be able to tell better how the Leukemia is reacting to the drugs. Hopefully we’ll see some signs of progress. The next bone marrow biopsy is about 4 months away……… can’t wait…………………………
Monday, January 28, 2008
09 - The Move
Wow, it’s been a few days since my last post! Must mean all is well I guess. We’ve been a tad busy the last couple of weeks, mainly with our move. It’s amazing how much stuff you accumulate over 8 years, but it’s all in the new house now. We had some wonderful help on moving day from family and friends, and of course everybody felt that with Leukemia I was somehow unable to lift a box. So I took advantage of that a little (but not too much :-)) but all in all we were done in a mere 4 hours, so that wasn’t too bad.
On the Leukemia front I had a checkup with my doctor this month. All seems to be well, White blood count seems to be stabilizing around 3 for now, so that’s ok. As far as the Gleevec goes I’m still on 400mg per day (which is the minimum the doctor thinks should be given in order for the Gleevec to be effective), which I try to take directly after dinner. No nausea whatsoever so I think taking it after dinner is a good thing there. Jill has actually had to remind me to take it a couple of times, which I took as a sign that it doesn’t occupy my mind as much anymore. Side effects have been very minimal so far, there has been some joint/bone aches during week 2-5 but that kind of subsided after that. Read somewhere that these aches and pains meant the drugs were doing their thing, (which made me wonder after week 5 if it was still doing it’s thing). The only noticeable difference is that I’m a little less of a night owl than I used to be, I definitely get tired a little sooner but that’s not too bad to deal with. Maybe I should try and exercise a little more and see if that helps, hope I’ll actually start some sort of routine this time around (since I’ve thought that thought a few times in the past!).
On the Leukemia front I had a checkup with my doctor this month. All seems to be well, White blood count seems to be stabilizing around 3 for now, so that’s ok. As far as the Gleevec goes I’m still on 400mg per day (which is the minimum the doctor thinks should be given in order for the Gleevec to be effective), which I try to take directly after dinner. No nausea whatsoever so I think taking it after dinner is a good thing there. Jill has actually had to remind me to take it a couple of times, which I took as a sign that it doesn’t occupy my mind as much anymore. Side effects have been very minimal so far, there has been some joint/bone aches during week 2-5 but that kind of subsided after that. Read somewhere that these aches and pains meant the drugs were doing their thing, (which made me wonder after week 5 if it was still doing it’s thing). The only noticeable difference is that I’m a little less of a night owl than I used to be, I definitely get tired a little sooner but that’s not too bad to deal with. Maybe I should try and exercise a little more and see if that helps, hope I’ll actually start some sort of routine this time around (since I’ve thought that thought a few times in the past!).
Frolicked in the snow a little yesterday, which was a ton of fun! It’s great to be able to go and play in the snow for a little while and then drive for 45 minutes and be away from the cold again. That does make Southern California a nice place to live; I think we’ll miss the weather aspect upon our next move. Hope all is well with you the readers as well, I added my direct email address under my profile, for those trying to get in touch directly.
Saturday, January 5, 2008
08 - The Bone Marrow Transplant Visit
Oh, Almost forgot to tell how the visit with the Bone Marrow Transplant Center went. Nothing too exciting really, except that I made it to LA within 45 minutes, meaning I arrived an hour early for my appointment. Go figure, leaving at 8AM you’d figure on a nice traffic logged journey (almost a little disappointed). So, naturally I actually had to wait ‘till it was my appointment time (though I got my Blood Pressure taken, height measured and was weighed in an hour early).
First I met with the Bone Marrow Transplant specialist who explained some about the disease and the bone marrow transplant and why they were having me meet with him in the first place; basically to get the process started just in case the drugs didn’t work, and to see if my sister would be a match to me. I asked a few questions I had, he did a physical (I was just starting my cold and had the aforementioned “kennel” cough) and he ordered some blood tests. Then I got to meet with the Social Worker who asked me how me and the family were coping with things, what my support system was like (more for bone marrow transplant reasons than mental health reasons I think) etc. etc.. Basically they wanted to make sure I wasn’t suicidal under all of this. They took down my sisters address who should be receiving a kit to get her blood tested which she would have to FedEx back to the City of Hope Hospital. Hopefully we’ll be match but our personalities are quite different (not sure if that makes a difference), and I’m a lot prettier (I’m sure that’s a factor) so chances are slim :-). On a side note I did mention to the Social Worker that a meeting like this would probably be a bit more useful right after you’re told you have Leukemia That way they might be able to talk you out of the cliff jump you’re about to make rather than have a no show for their appointment. Don’t think my suggestion will change the procedures in place, but at least I got my 2 cts in. After that it was on to the blood tests……….
Having blood drawn twice a week for the past couple of weeks I’d kind of gotten used to the blood test thing, but this time we went beyond anything I’d seen before. As the printer started spitting out labels the receptionist told me to go and take a seat so they can get started, she’d bring the rest of the labels in a minute. Casually asking how many vials of blood are being drawn she replied she wasn’t sure but it seemed to be a few. Well after counting the glasswork in front of me on the table it turned out to be 24 vials, which naturally took a few seconds to get filled. I was expecting a glass of OJ or something, but that didn’t seem to be necessary. In all honesty my hand was starting to feel a little numb but I wasn’t faint or anything. However, when you see the stacks of glass tubes in front of you, you’re kind of put back in place about the seriousness of the whole Leukemia thing. All in all I definitely left feeling a little more depressed than I did when I came.
First I met with the Bone Marrow Transplant specialist who explained some about the disease and the bone marrow transplant and why they were having me meet with him in the first place; basically to get the process started just in case the drugs didn’t work, and to see if my sister would be a match to me. I asked a few questions I had, he did a physical (I was just starting my cold and had the aforementioned “kennel” cough) and he ordered some blood tests. Then I got to meet with the Social Worker who asked me how me and the family were coping with things, what my support system was like (more for bone marrow transplant reasons than mental health reasons I think) etc. etc.. Basically they wanted to make sure I wasn’t suicidal under all of this. They took down my sisters address who should be receiving a kit to get her blood tested which she would have to FedEx back to the City of Hope Hospital. Hopefully we’ll be match but our personalities are quite different (not sure if that makes a difference), and I’m a lot prettier (I’m sure that’s a factor) so chances are slim :-). On a side note I did mention to the Social Worker that a meeting like this would probably be a bit more useful right after you’re told you have Leukemia That way they might be able to talk you out of the cliff jump you’re about to make rather than have a no show for their appointment. Don’t think my suggestion will change the procedures in place, but at least I got my 2 cts in. After that it was on to the blood tests……….
Having blood drawn twice a week for the past couple of weeks I’d kind of gotten used to the blood test thing, but this time we went beyond anything I’d seen before. As the printer started spitting out labels the receptionist told me to go and take a seat so they can get started, she’d bring the rest of the labels in a minute. Casually asking how many vials of blood are being drawn she replied she wasn’t sure but it seemed to be a few. Well after counting the glasswork in front of me on the table it turned out to be 24 vials, which naturally took a few seconds to get filled. I was expecting a glass of OJ or something, but that didn’t seem to be necessary. In all honesty my hand was starting to feel a little numb but I wasn’t faint or anything. However, when you see the stacks of glass tubes in front of you, you’re kind of put back in place about the seriousness of the whole Leukemia thing. All in all I definitely left feeling a little more depressed than I did when I came.
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