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I'm not sure I'm in denial, per se. I've been feeling pretty blank the past 3 days. If I've been working my way through those pesky stages, it certainly hasn't been in order. I don't believe I've hit angry yet, but grief showed up back in Jan. Bargaining doesn't seem to be on the radar either. There was a moment, yesterday, when DH said, "shoot" or some such, while we were at the Dr.'s office, that I could feel the tears coming on, but then he did the funniest thing to the nurse, and had all 3 of us gasping and laughing, and that moment passed.
Wednesday, we had the consult with the bone marrow transplant specialist. I thought we were going to learn if DH is a good candidate for the transplant, or if it is even an appropriate prescription for his situation. What we actually learned was this form of MDS with the 7th & 8th chromosomes being affected, will eventually turn into leukemia. Not "possibly" or "probably." WILL. Also, on the way there, the need for transfusions will come closer and closer together. The growth hormones (Darbopoetin and Nupagen) might help keep the transfusions at maximum intervals, but they'll not prevent this outcome. A bone marrow transplant is not something that might be a good idea, it is the only idea. There is nothing else at this time that could possibly work. So, no point in waiting around to see how the maintenance therapies work, Dr. Longo wants to start looking for a donor ASAP. He would have begun on Wed. if our stupid insurance situation had been resolved. We're really only days away from that, but it's frustrating still.
Bone Marrow Transplant. Huh. There's a 30% mortality rate just from the procedure, and graft vs. host disease. If you're in the 70% that survives, there's a 20% chance that the MDS will return. If it returns, well then, it sounds like you're going to be S.O.L. How do I factor these together? Does that mean there's only a 50-50 chance that this extremely dangerous and expensive procedure will work (30+20)? Or is it more like 75% ((70+80)/2)? I'd prefer thinking the latter, really. But I fear the former.
Let's see - anywhere from 8-12 mos just to find the donor (and I'm going to assume one will be found), an extended hospital stay where they kill your own immune system, leaving you vulnerable to ANY DAMN THING that could wander by (yeah, yeah, I know there are precautions), and then another good 12 months recovering. Because your new marrow has to grow, and then it has to produce, and what it produces has to be healthy and plentiful. And then, check ups twice a year to make sure it stays working. It's a damn long row to hoe.
Then yesterday's numbers were so pathetic that it was off for another big transfusion today. Everything slipped. Hemoglobin wasn't too bad at 9, but platelets in the single digits!! (9 also) and white blood cells back down to 2.0. Dr. Hei decided that after only 2 weeks of the growth hormones, he's doubling the Nupagen to twice a week. Those results were really disheartening to all of us. With the neutraphile (sp) at 500, we're only halfway to emerging from the bubble-life. It just doesn't seem fair. OTOH, everyone at our house has been amazingly healthy this winter, so all the handwashing and cleaning and quarantine must be working. But it seems so sad to me that the 15-20 minutes I spend on a barstool waiting for our Friday night "dinner out" to be ready, or the 20 min chatting with the wine or beer guys are pretty much my social life now. I'm somewhat of an introvert, but this is a bit much, even for me. It's at least an order of magnitude worse for DH. HE's the extrovert in the family. All I can say is, if he hits 1000, I'm calling all y'all to come right over and celebrate. It might only last a day, so don't be late.
Looking forward, the timing looks really sucky for the con too. September could be either the time he's getting transplanted, or it could be that he's so neutropenic, that even attending would be impossible. It's all up in the air right now, and I just wish I could see that far ahead, you know? I'm afraid the most realistic thing to do is bow out of the con, but I don't know who would be able to pick it up right now. I'm afraid if I let go of it, it will just be gone. That would make me sad. A lot more sad than knowing all my poly friends were together again, but not attending myself.
Well, I'm off to the hospital to collect up DH. Maybe we'll have a wine tasting tonight with the new finds.
Wednesday, we had the consult with the bone marrow transplant specialist. I thought we were going to learn if DH is a good candidate for the transplant, or if it is even an appropriate prescription for his situation. What we actually learned was this form of MDS with the 7th & 8th chromosomes being affected, will eventually turn into leukemia. Not "possibly" or "probably." WILL. Also, on the way there, the need for transfusions will come closer and closer together. The growth hormones (Darbopoetin and Nupagen) might help keep the transfusions at maximum intervals, but they'll not prevent this outcome. A bone marrow transplant is not something that might be a good idea, it is the only idea. There is nothing else at this time that could possibly work. So, no point in waiting around to see how the maintenance therapies work, Dr. Longo wants to start looking for a donor ASAP. He would have begun on Wed. if our stupid insurance situation had been resolved. We're really only days away from that, but it's frustrating still.
Bone Marrow Transplant. Huh. There's a 30% mortality rate just from the procedure, and graft vs. host disease. If you're in the 70% that survives, there's a 20% chance that the MDS will return. If it returns, well then, it sounds like you're going to be S.O.L. How do I factor these together? Does that mean there's only a 50-50 chance that this extremely dangerous and expensive procedure will work (30+20)? Or is it more like 75% ((70+80)/2)? I'd prefer thinking the latter, really. But I fear the former.
Let's see - anywhere from 8-12 mos just to find the donor (and I'm going to assume one will be found), an extended hospital stay where they kill your own immune system, leaving you vulnerable to ANY DAMN THING that could wander by (yeah, yeah, I know there are precautions), and then another good 12 months recovering. Because your new marrow has to grow, and then it has to produce, and what it produces has to be healthy and plentiful. And then, check ups twice a year to make sure it stays working. It's a damn long row to hoe.
Then yesterday's numbers were so pathetic that it was off for another big transfusion today. Everything slipped. Hemoglobin wasn't too bad at 9, but platelets in the single digits!! (9 also) and white blood cells back down to 2.0. Dr. Hei decided that after only 2 weeks of the growth hormones, he's doubling the Nupagen to twice a week. Those results were really disheartening to all of us. With the neutraphile (sp) at 500, we're only halfway to emerging from the bubble-life. It just doesn't seem fair. OTOH, everyone at our house has been amazingly healthy this winter, so all the handwashing and cleaning and quarantine must be working. But it seems so sad to me that the 15-20 minutes I spend on a barstool waiting for our Friday night "dinner out" to be ready, or the 20 min chatting with the wine or beer guys are pretty much my social life now. I'm somewhat of an introvert, but this is a bit much, even for me. It's at least an order of magnitude worse for DH. HE's the extrovert in the family. All I can say is, if he hits 1000, I'm calling all y'all to come right over and celebrate. It might only last a day, so don't be late.
Looking forward, the timing looks really sucky for the con too. September could be either the time he's getting transplanted, or it could be that he's so neutropenic, that even attending would be impossible. It's all up in the air right now, and I just wish I could see that far ahead, you know? I'm afraid the most realistic thing to do is bow out of the con, but I don't know who would be able to pick it up right now. I'm afraid if I let go of it, it will just be gone. That would make me sad. A lot more sad than knowing all my poly friends were together again, but not attending myself.
Well, I'm off to the hospital to collect up DH. Maybe we'll have a wine tasting tonight with the new finds.
Status Report
Wednesday, November 2nd, 2005 12:11 pmI've been trying to do something physical at least every other day. This currently translates to "walk the dog." We get in 1.5 to 2.5 miles each time out. I've managed 5 times this week, which is better than expected.
I imagine that when the weather gets yucky, I might be motivated to go back to yoga regularly. I love yoga, but I haven't been in the right frame of mind for it. I like it early in the morning, while the house is quiet. But to get that, I have to be doing it at 5 am or 530 at the latest. I'm not so crazy about this time slot. Yes, yes, I could do it after everyone leaves the house, but then it wouldn't be early and meditative. It would seem more like exercise than balance-seeking. Does this seem dumb? It seems dumb to me, but I can't seem to break the mindset.
I also fantasize that I'll be motivated to walk/run the stairs in the house a few times a week. This is plausible because we have 3 sets of stairs in the house, so it would be a decent circuit, if somewhat boring.
As for calorie control, I've come to the conclusion that the only place I can really ditch calories is in the alcohol department. I'm really quite the lush. I like a beer in the afternoon. Or at least while I'm cooking dinner. Unless I'm cooking with wine, which means I'll want a glass of that. If I'm making something that's going to be accompanied by vodka, I want wine while I'm cooking that too. If I have a martini with dinner, I'm going to want at least one more after dinner. If there's a liqueur in the house, I'll want it for dessert. I don't usually eat dessert, but I can almost always be convinced (like it takes any effort) to have a nightcap/dessert drink. After two martinis, I tend to lose judgement about how many more I should have. So really, one drink per day should be my limit. And if I manage to do that think of how many calories I won't be consuming! Because really, if I drink something besides alcohol, its water. Maybe herbal tea. I might have some juice on Sunday morning, or a glass of silk or milk instead of a snack, but that's pretty much it. No sodas, no coffee. Oh. Eggnog in the winter, but that usually replaces a snack or dessert or alcoholic drink. Sheesh, I forgot eggnog season was upon us. When we go out to eat, we 99.9% of the time go where there is a good bar of some kind. No Perkins for us, LOL.
Most of our friends know we eat pretty healthy stuff. I don't snack much, we don't keep a lot of traditional snack food in the house. Tortilla chips, cause we're all addicted to salsa. Popcorn. Some crackers. We all eat way too much cheese, but we also eat more veggies than most people, and lots of fruit. Whole grains, not a lot of meat, and we try to go with fresh and home-made as much as possible. We don't do a lot of cream sauces, but we're hitting the season for scalloped potatoes & pork chops. That dish is a serious downfall. We're pretty low fat all the time except for cheese and winter dishes that require milk and cheese. So it's the alcohol I have to cut back on. Oy.
I have successfully navigated the first Epic "hurdle." This is the first time they've asked me for more info. It's actually less info than was on the on-line application, but it's a hard-copy form I have to fill out and send in. Maybe they want to analyze my handwriting? Maybe they want to see how quickly I'll respond to the request? Who knows. I think it will be interesting to speak to them about the job even if I don't end up with it.
I'm trying to get the MAPC website posted for review, but I am too much of a dummie I guess. I'm positive that it's something relatively minor, and all it would take is someone who has published a web before to come over and point and say, "hey, you do it this way, ya big dummie." Any takers? Come on... you know you want to abuse me. ::bwg::
Mavis announced yesterday that she passed her test to get her temporary driver's license. EEEEK!
Rupert is 13 on Friday (11/4) and his big brother is 30 the same day. More EEeek!
I imagine that when the weather gets yucky, I might be motivated to go back to yoga regularly. I love yoga, but I haven't been in the right frame of mind for it. I like it early in the morning, while the house is quiet. But to get that, I have to be doing it at 5 am or 530 at the latest. I'm not so crazy about this time slot. Yes, yes, I could do it after everyone leaves the house, but then it wouldn't be early and meditative. It would seem more like exercise than balance-seeking. Does this seem dumb? It seems dumb to me, but I can't seem to break the mindset.
I also fantasize that I'll be motivated to walk/run the stairs in the house a few times a week. This is plausible because we have 3 sets of stairs in the house, so it would be a decent circuit, if somewhat boring.
As for calorie control, I've come to the conclusion that the only place I can really ditch calories is in the alcohol department. I'm really quite the lush. I like a beer in the afternoon. Or at least while I'm cooking dinner. Unless I'm cooking with wine, which means I'll want a glass of that. If I'm making something that's going to be accompanied by vodka, I want wine while I'm cooking that too. If I have a martini with dinner, I'm going to want at least one more after dinner. If there's a liqueur in the house, I'll want it for dessert. I don't usually eat dessert, but I can almost always be convinced (like it takes any effort) to have a nightcap/dessert drink. After two martinis, I tend to lose judgement about how many more I should have. So really, one drink per day should be my limit. And if I manage to do that think of how many calories I won't be consuming! Because really, if I drink something besides alcohol, its water. Maybe herbal tea. I might have some juice on Sunday morning, or a glass of silk or milk instead of a snack, but that's pretty much it. No sodas, no coffee. Oh. Eggnog in the winter, but that usually replaces a snack or dessert or alcoholic drink. Sheesh, I forgot eggnog season was upon us. When we go out to eat, we 99.9% of the time go where there is a good bar of some kind. No Perkins for us, LOL.
Most of our friends know we eat pretty healthy stuff. I don't snack much, we don't keep a lot of traditional snack food in the house. Tortilla chips, cause we're all addicted to salsa. Popcorn. Some crackers. We all eat way too much cheese, but we also eat more veggies than most people, and lots of fruit. Whole grains, not a lot of meat, and we try to go with fresh and home-made as much as possible. We don't do a lot of cream sauces, but we're hitting the season for scalloped potatoes & pork chops. That dish is a serious downfall. We're pretty low fat all the time except for cheese and winter dishes that require milk and cheese. So it's the alcohol I have to cut back on. Oy.
I have successfully navigated the first Epic "hurdle." This is the first time they've asked me for more info. It's actually less info than was on the on-line application, but it's a hard-copy form I have to fill out and send in. Maybe they want to analyze my handwriting? Maybe they want to see how quickly I'll respond to the request? Who knows. I think it will be interesting to speak to them about the job even if I don't end up with it.
I'm trying to get the MAPC website posted for review, but I am too much of a dummie I guess. I'm positive that it's something relatively minor, and all it would take is someone who has published a web before to come over and point and say, "hey, you do it this way, ya big dummie." Any takers? Come on... you know you want to abuse me. ::bwg::
Mavis announced yesterday that she passed her test to get her temporary driver's license. EEEEK!
Rupert is 13 on Friday (11/4) and his big brother is 30 the same day. More EEeek!
