I guess you could say we are "settling in." For me, that has involved very little "settling." Brett went back to work part time, and is approaching full time, and I have been leading a semi-normal existence which doesn't actually feel normal yet. By "normal," I mean I get out of bed, drive or walk around doing errands, play outside with Luna and Topo (who just came home last week), catch up with friends, get Luna and I fed, and remember to take my medicines on my own. Which just reminds me, I forgot to take my noon pills today. Don't worry though, they're just vitamins I can take tonight. Although I'm late on those (you can see this is going really well). I'm trying.
This week in normalcy was sponsored by Brett's parents, who came for a visit and took Luna off our hands several times, and cooked us food and helped Brett do home improvements on the Tahoe Park house. My parents were here over the weekend helping out, and introducing me to the frozen yogurt place around the corner, which for some reason I'd never been to. So we had a full house a couple of nights, which was fun. I even had a dinner date with Brett. I can go to public places when they are not too full, so it was an early dinner, home by 8. I swear its because of my immuno-suppression, not because we're old and boring.
My clinic visits are still once a week. We started to taper my prednisone, but the rash came back in new and interesting places. So now I'm back at my normal dose. Which means I continue to swell up like the Michelin (I don't feel like checking the spelling on that) Man. I feel as though my face is sometimes unrecognizable, but I'm probably exaggerating. A lot of it is water retention, and a lot of it is that I eat a lot. The prednisone makes me do it. I've gained 10 pounds since I've been home! Granted, I have been slightly underweight for a long time, but I had gotten used to it. The rash is gone now though, so I may get to try another taper soon. I really want my cheekbones, waistline and jawline back. How lame and shallow is that. I am also hairy, a side-effect from both my cyclosporine and prednisone. You would think that's a good thing for someone who lost all their hair recently. But I mean hair and then some. Especially my arms and face. My eyebrows and eyelashes are thicker, my arm hairs are creeping onto my hands, I have these sideburns now and I think I'm getting a beard. Seriously. It's blond, so you can't see it except in certain lighting, but I really don't know where it's headed.
Let's delude ourselves into thinking that my weight gain is all muscle from all the walking and yoga I've been doing. I've done a few 75-minute yoga practices using podcasts from Zuda (my lovely yoga studio <3). I feel like I'm starting over, but at the same time, it's one of the only things that has felt familiar in my body in a very long time. It's the first time I've done a full yoga practice since March 12, 2010. Prior to that, I practiced almost every day and taught about 5 times a week. So this is a big step for me. I don't know how it will go at the end of the month when I have to get my next Ommaya injection, though. Not a good time to be upside down. Sigh.
On another extremely crappy note, I recently found out that Mandi Schwartz, who has been mentioned in this blog before (she is often written about in the New York Daily News and New York Times) relapsed in mid-December, and is discontinuing treatment. We both had cord transplants on the same day, and then lived on the same floor at the Pete Gross house after we discharged. We never really talked, although both Brett and I always meant to strike something up (yes, we are socially-challenged people. Thank god we have Luna). As a patient, you come to recognize people who want to talk, and those who don't. I think those who are more sociable are generally doing fairly well. Mandi and her mom were very polite, but didn't seem to want to chat in the elevator or anything. But I often compared my progress to Mandi's by observation. I thought were doing the same. We both had our little portable IV fluid bags on in the morning, we would both slog ourselves slowly up the hill to clinic rather than taking the shuttle, I saw her moon face when she started prednisone. I can't stop thinking about her. I know now from the articles I've read that our prognoses were very different but I feel- I don't know- guilty or something. And just sad. As I still think of her as my companion in transplant, I find I'm worrying over my own condition and blood counts more and more, even when my doctor says they're fine. I don't feel at all safe in my healing. I don't know if I mentioned it before, but I feel the need to mention now how much this disease just BLOWS.
Okay, on a less crappy note, I'm going to be part of an interview for a webcast/podcast on "Patient Power" (http://www.patientpower.info/). It will be about new types of stem cell transplants (cords and haplo or half-matched transplants), and will include a doctor (coincidentally, my doctor part of the time while I was in the hospital) and another patient I believe. The researcher that ran my clinical trial suggested me for the interview apparently. I have no idea why. I did read in one of my files that one doctor described me as "eloquent," which I didn't realize would be the type of thing one would write in a patient's medical file, but maybe that's why. When she asked me, however, I didn't mention that I don't remember the first 18 days after transplant. And these days, I can hardly form a coherent sentence half the time. Hope that won't be an issue. So anyway, you can tune in to the website on January 31st at 2 p.m. PST and hear me make an idiot of myself.
You're probably thinking, "Why are you still writing? Do you think I have all the time in the world to waste on this? And anyway, you need to go take your meds already, you're already late." You're right.
xoxo, jess
Wednesday, January 19, 2011
Monday, January 3, 2011
Home
After 4 days home, I am still too conflicted to write about it. But get this: I'm still going to write about it! Because I want to be a good, responsible blogger. That, and I really don't have a whole lot else I can do around here. Let me back up just a little to report that my final tests in Seattle revealed I'm doing fairly well. There are a couple of little issues which I'll discuss later. But no loss of lung, liver, heart or kidney function which is great. Unless the GVHD gets to them, but let's not go there till we have to. The prednisone is working for now, so I can start to taper down on the dose a little. And I have a new medication that replaces 6 giant pills a day with 2 little ones. Awesome! My medicine cabinet still looks like a pharmacy, but every little bit helps. Also, it was pointed out to me that I now have 2 sets of DNA. My blood DNA is totally different than DNA taken from my hair or skin or wherever else. The DNA in my blood would match some kid in Australia's, but the rest of it is my own. My blood type has also switched from O+ to O-. The universal donor, if I could donate. For Pete's sake, what a freak show.
So, being home. I must say, we had really gotten used to our minimalist life in Seattle, similar to when we lived in New York. Plus, I had Brett and Luna and Jo and Jen and Mike and Nico there, plus family and friends coming to visit regularly, so I didn't really feel like I was "away" in Seattle. It got homey. Not to mention that my every day was scheduled and printed out for me. Coming back to our house full of stuff felt cluttered and heavy with the weight and turbulence of the last year, and there is this chaotic feeling of several months that have to be planned day by day since we haven't figured out how to organize our lives with Brett's return to work, my health and ability to take care of Luna alone, and to eventually work again... So, Brett and I spent a cathartic New Year's Eve packing a bunch of useless stuff up for donation or throwing it away. We purged several bags of stuff, and had the restraint not to give in to Brett's musing that we just take everything out of the house into the street and burn it and start all over. I know that escape from cruddy memories isn't really possible, no more than the escape from some mourning of memories of the time when life seemed "normal;" however...a nice bonfire was tempting. And I would really like some new furniture. But everywhere is a little "haunted" for me at the moment. Today, we had to drop my files off at the UCDMC Cancer Center, where I began and will now continue treatment. Luna asked if I had to go live at the hospital again. I was similarly spooked being back there.
Luna was so excited to be home, especially in the backyard. That kid loves being outside and exploring. She also has all of her old toys here, which apparently require being removed one by one from wherever they are kept and spread across the house so she can see them all. She's such a happy, adaptable little girl...we are just too lucky. Except when she's being a jerk, which luckily isn't that often, and is considerably less often than her parents.
There is also the incredible awesomeness of seeing my friends here again. That's when I feel really happy to be here. I have said it a million times before, but I have no idea how we've been able to surround ourselves with people like these. Topo is not home yet, but hopefully will be later this month. It's hard to feel totally complete without him around. I haven't seen him in 6 months.
So on the health front, I ended up having another Ommaya injection 2 days before we left Seattle, and am dealing with the normal issues from that. Which suck, but they're not quite as bad as before. I haven't had to stay in bed all day, anyway. It's incredibly important that I exercise now, because the steroids I take, and the fact that I am technically post-menopausal from my treatments (which was expected), both contribute to bone loss. I had a bone density scan before I left Seattle, and they detected some demineralization of the bone in my left hip (which has been shoddy for a couple of years now anyway, so I wasn't hugely surprised). So I take my supplements and blah blah blah, and have gone on a couple of walks. Walks in the flat lands are very different than Seattle walks, by the way. But this initial walking is mild preparation, really, for getting back to yoga and more weight-bearing exercise. Unfortunately, for how active I have been in my life, I dread the thought of physical activity now. It just makes me so wiped out afterwards (not in a good way), and I'm so weak and pathetic during the whole ordeal. For example, on today's walk, I tried to "trot" across the street to avoid a car. Well, apparently my legs do not remember how to run. They wouldn't spring back up. So as I ran, I just got lower and lower to the ground. I thought I was going to end up in the gutter by the time I reached the other side of the street. It was devastating. Although, recounting the incident later, I also realize it was hilarious.
I have an appointment with my doctor tomorrow, and I'll probably have appointments once a week for some time. They're basically just monitoring my medication concentrations, blood counts, GVHD, and the status of viruses I already have that are currently latent, but could activate at any time while I'm on immunosuppressants. Less frequent visits are good, since I had my central line pulled in Seattle and now have to have peripheral blood draws. I saved the line; maybe I'll post a picture of it. The docs were fairly confused when I asked if I could keep it. But we spent a lot of time caring for it and cleaning it and adjusting my wardrobe for it...plus, I got all kinds of good stuff out of that thing! Of course I'm keeping it. Also, it's just a trip that it was IN MY HEART.
Anyway, given my physical exertions today, that's all I can manage blogwise. Being in Seattle wasn't bad, and being back in Sacramento is good too. Being anywhere is good. There is a lot of love in my life that makes that possible. Cheesy, isn't it?
~j
So, being home. I must say, we had really gotten used to our minimalist life in Seattle, similar to when we lived in New York. Plus, I had Brett and Luna and Jo and Jen and Mike and Nico there, plus family and friends coming to visit regularly, so I didn't really feel like I was "away" in Seattle. It got homey. Not to mention that my every day was scheduled and printed out for me. Coming back to our house full of stuff felt cluttered and heavy with the weight and turbulence of the last year, and there is this chaotic feeling of several months that have to be planned day by day since we haven't figured out how to organize our lives with Brett's return to work, my health and ability to take care of Luna alone, and to eventually work again... So, Brett and I spent a cathartic New Year's Eve packing a bunch of useless stuff up for donation or throwing it away. We purged several bags of stuff, and had the restraint not to give in to Brett's musing that we just take everything out of the house into the street and burn it and start all over. I know that escape from cruddy memories isn't really possible, no more than the escape from some mourning of memories of the time when life seemed "normal;" however...a nice bonfire was tempting. And I would really like some new furniture. But everywhere is a little "haunted" for me at the moment. Today, we had to drop my files off at the UCDMC Cancer Center, where I began and will now continue treatment. Luna asked if I had to go live at the hospital again. I was similarly spooked being back there.
Luna was so excited to be home, especially in the backyard. That kid loves being outside and exploring. She also has all of her old toys here, which apparently require being removed one by one from wherever they are kept and spread across the house so she can see them all. She's such a happy, adaptable little girl...we are just too lucky. Except when she's being a jerk, which luckily isn't that often, and is considerably less often than her parents.
There is also the incredible awesomeness of seeing my friends here again. That's when I feel really happy to be here. I have said it a million times before, but I have no idea how we've been able to surround ourselves with people like these. Topo is not home yet, but hopefully will be later this month. It's hard to feel totally complete without him around. I haven't seen him in 6 months.
So on the health front, I ended up having another Ommaya injection 2 days before we left Seattle, and am dealing with the normal issues from that. Which suck, but they're not quite as bad as before. I haven't had to stay in bed all day, anyway. It's incredibly important that I exercise now, because the steroids I take, and the fact that I am technically post-menopausal from my treatments (which was expected), both contribute to bone loss. I had a bone density scan before I left Seattle, and they detected some demineralization of the bone in my left hip (which has been shoddy for a couple of years now anyway, so I wasn't hugely surprised). So I take my supplements and blah blah blah, and have gone on a couple of walks. Walks in the flat lands are very different than Seattle walks, by the way. But this initial walking is mild preparation, really, for getting back to yoga and more weight-bearing exercise. Unfortunately, for how active I have been in my life, I dread the thought of physical activity now. It just makes me so wiped out afterwards (not in a good way), and I'm so weak and pathetic during the whole ordeal. For example, on today's walk, I tried to "trot" across the street to avoid a car. Well, apparently my legs do not remember how to run. They wouldn't spring back up. So as I ran, I just got lower and lower to the ground. I thought I was going to end up in the gutter by the time I reached the other side of the street. It was devastating. Although, recounting the incident later, I also realize it was hilarious.
I have an appointment with my doctor tomorrow, and I'll probably have appointments once a week for some time. They're basically just monitoring my medication concentrations, blood counts, GVHD, and the status of viruses I already have that are currently latent, but could activate at any time while I'm on immunosuppressants. Less frequent visits are good, since I had my central line pulled in Seattle and now have to have peripheral blood draws. I saved the line; maybe I'll post a picture of it. The docs were fairly confused when I asked if I could keep it. But we spent a lot of time caring for it and cleaning it and adjusting my wardrobe for it...plus, I got all kinds of good stuff out of that thing! Of course I'm keeping it. Also, it's just a trip that it was IN MY HEART.
Anyway, given my physical exertions today, that's all I can manage blogwise. Being in Seattle wasn't bad, and being back in Sacramento is good too. Being anywhere is good. There is a lot of love in my life that makes that possible. Cheesy, isn't it?
~j
Monday, December 20, 2010
Lunar eclipse and moon face
Yes, this is the way things operate around here. Total lunar eclipse tonight and probably the best viewing location in the country is here in Seattle, where I haven't seen a star since I've been here. Tonight will be no exception; the clouds are as thick as marmalade. I'm sorry, I can't think of any other simile at the moment. The point is, the yin and yang of it all is making my head spin.
So along those lines, as I'm doing all my follow-up tests and such to prepare for a Dec. 29th discharge, while I was still on a high from my clean biospy, I found out that my graft-vs.-host disease (GVHD) has returned and is chronic. I don't know if I explained it before, but GVHD is when the new cells think your body is a foreign object and attack it. Commonly in occurs in the skin, GI tract, mouth, liver, lungs, eyes, and/or joints. I tested positive for it in the skin (the rash I had shortly after transplant). Initially, we thought it was acute, meaning it was just a one-shot deal, and it went away on its own. But last week, it came back, with some extra umph, and some GVHD signs are showing up in my mouth too. Gross! "Chronic" basically means "persistent," and means I'll need to be treated for it until my new cells become tolerant of my body. Which is a long time; over the next 9 months at the very least, at the most a couple of years. If I stop treatment, it will probably just pop up somewhere else and get worse. The treatment for GVHD is prednisone, a steroid. I've been lucky to avoid it this long, as it has all sorts of nasty side effects if you take a high dose for a long time, such as bone loss, inability to sleep, muscle wasting, fluid retention, weakened immune system, high cholesterol, and I can't even remember the other ones. I would guess that most transplant patients are on it at some point. Luckily, I will be on a very low dose where I shouldn't see most of the side-effects. That is IF my GVHD stays under control. I don't know if any of you know anyone with lupus, but GVHD is very similar. However, it is curable once the new cells get their shiz together.
One side effect of taking prednisone is that you get this big round face. And I mean BIG and ROUND. It's very distinctive, and they call it a "moon face." I can immediately tell in the clinic who is on pred by their face. I don't know how high the dose is that makes it so extensive, but I'm betting its not that high. Now seriously, I have no idea how I have any vanity left after the course of this disease. I lost my hair twice, have a lump on my hairless head where my Ommaya port is, I have all this facial hair from my cyclosporine (luckily, it's mostly blond), my hands and feet are all mottled from I can't even remember what, I have scars all over from biospies, skin punches, and catheters, and my lips peel constantly. I don't even want to discuss the shape my body is in. But I am absolutely dreading the prednisone moon face. It's just like, C'MON! Anyway, you are all now prepared for the next time you see me. Oh, and I'll have a nice belly to complement my little stick legs (another side effect).
Yin and yang: having GVHD really lessens your chance of leukemia relapse. My new cells are working hard, although a little too hard. Overachieving cells. It figures.
So, all that considered, my back pain is gone for now and I'm doing pretty well blood-count-wise. I'm really looking forward to Christmas. My mom is here, so it will be the four of us, and I've come to like our little apartment so it seems homey to me. Although I wish Topo was here. See our tree in the above pic? It's actually this funny little 2-dimensional fake tree. I'm not allowed to have live (or recently dead) plants in the house because of the risk of fungal pneumonia. So this is what we get. And I like it!
I hope you all are enjoying getting ready for whatever holidays you are celebrating and Happy Solstice!
lots of love, j
So along those lines, as I'm doing all my follow-up tests and such to prepare for a Dec. 29th discharge, while I was still on a high from my clean biospy, I found out that my graft-vs.-host disease (GVHD) has returned and is chronic. I don't know if I explained it before, but GVHD is when the new cells think your body is a foreign object and attack it. Commonly in occurs in the skin, GI tract, mouth, liver, lungs, eyes, and/or joints. I tested positive for it in the skin (the rash I had shortly after transplant). Initially, we thought it was acute, meaning it was just a one-shot deal, and it went away on its own. But last week, it came back, with some extra umph, and some GVHD signs are showing up in my mouth too. Gross! "Chronic" basically means "persistent," and means I'll need to be treated for it until my new cells become tolerant of my body. Which is a long time; over the next 9 months at the very least, at the most a couple of years. If I stop treatment, it will probably just pop up somewhere else and get worse. The treatment for GVHD is prednisone, a steroid. I've been lucky to avoid it this long, as it has all sorts of nasty side effects if you take a high dose for a long time, such as bone loss, inability to sleep, muscle wasting, fluid retention, weakened immune system, high cholesterol, and I can't even remember the other ones. I would guess that most transplant patients are on it at some point. Luckily, I will be on a very low dose where I shouldn't see most of the side-effects. That is IF my GVHD stays under control. I don't know if any of you know anyone with lupus, but GVHD is very similar. However, it is curable once the new cells get their shiz together.
One side effect of taking prednisone is that you get this big round face. And I mean BIG and ROUND. It's very distinctive, and they call it a "moon face." I can immediately tell in the clinic who is on pred by their face. I don't know how high the dose is that makes it so extensive, but I'm betting its not that high. Now seriously, I have no idea how I have any vanity left after the course of this disease. I lost my hair twice, have a lump on my hairless head where my Ommaya port is, I have all this facial hair from my cyclosporine (luckily, it's mostly blond), my hands and feet are all mottled from I can't even remember what, I have scars all over from biospies, skin punches, and catheters, and my lips peel constantly. I don't even want to discuss the shape my body is in. But I am absolutely dreading the prednisone moon face. It's just like, C'MON! Anyway, you are all now prepared for the next time you see me. Oh, and I'll have a nice belly to complement my little stick legs (another side effect).
Yin and yang: having GVHD really lessens your chance of leukemia relapse. My new cells are working hard, although a little too hard. Overachieving cells. It figures.
I hope you all are enjoying getting ready for whatever holidays you are celebrating and Happy Solstice!
lots of love, j
Tuesday, December 14, 2010
Sigh. of. relief.
Anyway, I of course have been worried about this biopsy since my last one 54 days ago. I just got the results of the flow cytometry from the biopsy and they showed no abnormal cells! There are still 2 other tests to go...a pathology report and the chimerism report (which tells you what percentage of cells are my old ones and how many are donor. My last one was 100% donor, which is what you want. Other chimerisms are possible as long as the cells that come back are not leukemic). I also had a skin biopsy to see if I'm still having GVH of the skin. It's still a little bumpy in places, so I'm thinking I do. But I am so relieved I have gotten through the first 100 days without a relapse; and that the transplant worked! Also, I won't have another bone marrow biopsy until August, unless something happens before that that worries my doctors. I probably don't have to tell you, it is not a comfortable procedure so that's good news too.
Last week, Brett took Luna to San Diego for a few days, and my mom came up to help Jo take care of me. Not that there is a lot to do, but I thought it would be nice for Jo to have a break from being responsible for other people for a couple of days, and if anything scary happened, it might be more comfortable to deal with as a team. Brett and Luna had a great time, despite my missing them to pieces, and I took the opportunity to try to do more things myself (like hooking up my IV and flushing my lines and remembering my pills and whatnot). It went well, but I still needed help remembering things. Good old chemo brain. And Jo was much more masterful of the IV pump than I was. But overall I was feeling a lot more confident about taking care of myself when we're back in Sac and Brett goes back to work in January. But of course, the other-damn-thing rule came into play and my crazy, intense back pain came back on Saturday (I stopped my steroids again last Tuesday). At least its not the headache, but I can barely walk at times. So frustrating when I am sleeping again, not nearly as fatigued as I have been, was getting out a little bit (a special Picasso exhibit at the museum, and the mall), and have been in much better spirits all around. Oh well, I guess it won't last forever. But if it lasts until the next Ommaya injection, I'll be a little annoyed. My team said they were going to talk to the neuroncologist about these side-effects since I still need 4 more Ommaya injections and clearly the Depocyt (the chemical used) is extremely toxic to me. I know, I know...what treatment have I had that isn't extremely toxic. But there may be other options.
In other news, they cut a few of my pills which is nice. One of the pills is a really crappy one. It dissolves super fast and of course tastes terrible, but is hard to swallow quickly because its shaped like a trapezoid. Seriously, who engineers a pill like that? A trapezoid?
I also have to mention a book I read recently called "The Emperor of all Maladies: a Biography of Cancer." It's a fantastic read about the history of cancer occurrence throughout history, about the development of treatments, the biology of cancer, and its role in society (and society's role in cancer research too). It may sound depressing and there are definitely sad parts, but on the whole, its hopeful. Which is nice. I suppose it would be pretty jerky to put out a book about how hopeless cancer is. The author is an oncologist and researcher and a great, readable writer. I couldn't put the dang thing down. It's a brand-new book still only in hardcover, but you can get it on Kindle for a reasonable price.
Anyway, with the biopsy out of the way, I can start all my discharge testing this week and next. So we can get a closer look at the physical mess I've become and can plan my maintenance care for my doctor in Sac. I just need to say infection-free now. Jo left today to prepare for student teaching back in Carson City. I can't get over what a gift my sister has been for us over the past few years. I miss her already, and I know Luna does too, but I'm excited she's getting her career started. So Luna will come to clinic with us for a few days, which delights everyone at the clinic. Then my mom comes to help with Luna for a little while. So that's the plan-ish.
Ok, I have to add this in. Just about 2 minutes ago, my medical supply delivery people knocked on the front door and Brett went to the door saying, "Come on, Luna! Let's see who's at the door!" Well, Luna started crying and climbed into my lap in a panic, hiding her face. After she composed herself, she said, "I don't want to go see Santa! He's scary!" She thought Santa was at the door! I completely get it...I have never a big fan of the Santa story as it is so full of holes. And since we don't have a chimney, what am I supposed to say? He comes in through the window? He picks a lock and comes in the door? Both sound creepy. So I never talk about him. I'll let Brett handle Santa this year.
Hope you all are getting ready for the holidays without fear.
love to you, j
Monday, December 6, 2010
The Furuncle and other Misadventures
Where to begin...I think first I'd like to thank everyone that sent me private messages about their experiences with anti-depressants. It really helped my decision to start one. So...we'll see about getting over this hump. One of my fellow transplantees' mothers was quoted in an article as saying "Transplant is like being dumped in hell and then being asked to crawl back out." That might be a little hyperbolic, but it certainly resonated with me...
I am also at a point in recovery where all my counts go down and creep up again slowly. No one is sure exactly why this "60-day slump" happens in transplant, but it makes it much less fun to hear my blood counts. Nothing is worrisomely low yet. Neutrophils are low of course, but I still have enough for some immune response. Platelets are good, red blood down just a little.
To add to and emphasize my point that if it's not one damn thing, it's another: last week when everything had been going along without event, aside from random nausea here and there, and of course the raging depression and general sleeplessness, I noticed I had some pain in one nostril. It was definitely just one side, and further investigation (with a TISSUE of course) revealed old blood. Now, remember that I was radiated across my whole body within an inch of my life 75 days ago, so I am a very dry, desiccated person. Always peeling or something somewhere. And not too long ago, my platelets were chronically low so I was bleeding everywhere between transfusions (not to make it sound too crazy. It was bleeding under the skin, on my eyes which was kind of gross, that sort of thing. I had a real nosebleed in the hospital that lasted hours). So that wasn't a huge surprise to find old blood assuming the skin had cracked up in my nose at some point.
The pain continued, though, and I would check it from time to time to see if it was bleeding up there or something. Then one day, I noticed that the nostril in question was swollen (if you're thinking it was because of my repeated investigation, well, probably. I don't know.). However, MY first thought was that it was more leukemia. I think I will think that about every ache and pain for a very long time. That a few cells had somehow hidden out in my nose through transplant which would have been a very good idea for them and there would be no way to treat it since my body is still weak and my marrow is still new and my organs are tired...and so it would just spread if it hadn't already but there would be no treatment... [and there you have a pretty good example of the potential downward-spiraling thinking that every cancer patient probably knows (you end up working very hard on ways of thinking/being that avoid this spiral).]
So anyway after day two of this swelling, and my ruminating about it constantly, I made an appointment with my nurse, who had me come in right away. Surprisingly, my whole team showed up sequentially to look in my nose. My nurse didn't know what it was. The PA didn't know. Then the attending took a look and said immediately "Oh! It's a furuncle!" He's Croatian I guess, not a terribly heavy accent but definitely an accent. But I couldn't believe such a ridiculous word could be describing a medical condition, and maybe I wasn't understanding correctly, so we went a couple of rounds of "Furuncle?" "Furuncle!" before he said "It's a boil. It should probably be lanced. Put her on an oral antibiotic and let's get her over to a nose guy." And he left with a flourish because that's just how he is.
They did get me in to a ear-nose-throat guy over at UW immediately, which is actually called an otolaryngologist if you want to be respectful. The resident came in, had a look, and confirmed the furuncle, but wasn't sure if we should lance it or not. We waited a while for the attending to come out of surgery and the resident asked about the history of my disease, which I get so tired of telling, and FINALLY the doctor came in and also thought against lancing it given my weakened immune system. They confirmed I should take a course of oral antibiotics and also use a topical one a few times a day, and if things don't improve in a week and blah blah blah...and we went home. Seven hours of doctor's visits absolutely wiped me out. Also releasing my mind from the idea that I still had leukemia was exhausting. I've been told my cancer was something else before, so its hard for me not to retain a tiny bit of dubiousness...
So, furuncle aside, last week I also cut short my steroid course on the advice of my attending (he advised me as such: "You have been on steroids too long. Stop taking them." And my neuro is in Cabo, remember, so there's no consulting him). I then spent the weekend in the throes of incredible headaches. I kept thinking about the potential side effects of pretty much every medication or treatment I've had. "May cause vomiting, diarrhea and severe headache." Saturday night was pretty much that, simultaneously. Although the vomiting was probably from the painkillers, which I think I've mentioned before, I hate taking. So let me add I was dopey and emotional from taking those and finally I was clawing for the steroid bottle. Now, I'm not a fan of steroids either. I have a big round face from this little bit and they play with your blood counts. But they work for when your brain tissues are trying to explode out of your head so they seem to have their place. At some point, I was able to sleep a little I guess, the only good part about painkillers as far as I'm concerned. Sunday of course was mostly spent in bed feeling utterly defeated and beat-up, but I did take my steroid, and was able to make a short foray out with the Hunter-Cobbs to look at a house (I have been watching WAY too many Househunters to miss out). Still some headaches, but not the reduce-me-to-tears kind. And Sunday night, I actually slept through the night.
Today I had my regular appointment with my team. The attending was very disappointed that my furuncle had not been lanced, even though I assured him it was getting smaller and the pain was absolutely gone. "But it's still there! Ah, I just want to get in and do it myself!" He came out of my nose all excited. "Don't you just love popping these things when they're on your neck or whatever and all that pus comes out! Oh well." He added rather hopefully that it may rupture on its own. We discussed that I had decided to finish out the steroids given recent events, and he agreed, "Well yeah, take the dang steroids." Then there was a lot of discussion about the future of my Ommaya injections that doesn't bear repeating. But I will have one more before I leave here. Oy.
SO that's what's been going on lately. But I have to say, today was really weird. Nothing hurt. No nausea or headaches. I'm still physically weak, but there was no bone-crushing fatigue. I had energy to make lunch for Luna which surprised her, and an almost-normal mood. I laughed with Jo about something. I verbally guided Brett through an hour-long yoga practice. I wrote this blog. Even my doctor said, "Well you look perky." I can't remember the last time I felt like this, but it was a much-needed glimpse at what getting better looks like. I honestly haven't seen it since the transplant, I've gotten so used to some kind of pain or total-body-shut-down every day. I don't know why it happened or if I expect it to last, but I hope I don't forget this feeling again.
Love to everybody.
Edited to add: Today is day +75 post-transplant. Wow. Don't know if it feels longer or shorter.
I am also at a point in recovery where all my counts go down and creep up again slowly. No one is sure exactly why this "60-day slump" happens in transplant, but it makes it much less fun to hear my blood counts. Nothing is worrisomely low yet. Neutrophils are low of course, but I still have enough for some immune response. Platelets are good, red blood down just a little.
To add to and emphasize my point that if it's not one damn thing, it's another: last week when everything had been going along without event, aside from random nausea here and there, and of course the raging depression and general sleeplessness, I noticed I had some pain in one nostril. It was definitely just one side, and further investigation (with a TISSUE of course) revealed old blood. Now, remember that I was radiated across my whole body within an inch of my life 75 days ago, so I am a very dry, desiccated person. Always peeling or something somewhere. And not too long ago, my platelets were chronically low so I was bleeding everywhere between transfusions (not to make it sound too crazy. It was bleeding under the skin, on my eyes which was kind of gross, that sort of thing. I had a real nosebleed in the hospital that lasted hours). So that wasn't a huge surprise to find old blood assuming the skin had cracked up in my nose at some point.
The pain continued, though, and I would check it from time to time to see if it was bleeding up there or something. Then one day, I noticed that the nostril in question was swollen (if you're thinking it was because of my repeated investigation, well, probably. I don't know.). However, MY first thought was that it was more leukemia. I think I will think that about every ache and pain for a very long time. That a few cells had somehow hidden out in my nose through transplant which would have been a very good idea for them and there would be no way to treat it since my body is still weak and my marrow is still new and my organs are tired...and so it would just spread if it hadn't already but there would be no treatment... [and there you have a pretty good example of the potential downward-spiraling thinking that every cancer patient probably knows (you end up working very hard on ways of thinking/being that avoid this spiral).]
So anyway after day two of this swelling, and my ruminating about it constantly, I made an appointment with my nurse, who had me come in right away. Surprisingly, my whole team showed up sequentially to look in my nose. My nurse didn't know what it was. The PA didn't know. Then the attending took a look and said immediately "Oh! It's a furuncle!" He's Croatian I guess, not a terribly heavy accent but definitely an accent. But I couldn't believe such a ridiculous word could be describing a medical condition, and maybe I wasn't understanding correctly, so we went a couple of rounds of "Furuncle?" "Furuncle!" before he said "It's a boil. It should probably be lanced. Put her on an oral antibiotic and let's get her over to a nose guy." And he left with a flourish because that's just how he is.
They did get me in to a ear-nose-throat guy over at UW immediately, which is actually called an otolaryngologist if you want to be respectful. The resident came in, had a look, and confirmed the furuncle, but wasn't sure if we should lance it or not. We waited a while for the attending to come out of surgery and the resident asked about the history of my disease, which I get so tired of telling, and FINALLY the doctor came in and also thought against lancing it given my weakened immune system. They confirmed I should take a course of oral antibiotics and also use a topical one a few times a day, and if things don't improve in a week and blah blah blah...and we went home. Seven hours of doctor's visits absolutely wiped me out. Also releasing my mind from the idea that I still had leukemia was exhausting. I've been told my cancer was something else before, so its hard for me not to retain a tiny bit of dubiousness...
So, furuncle aside, last week I also cut short my steroid course on the advice of my attending (he advised me as such: "You have been on steroids too long. Stop taking them." And my neuro is in Cabo, remember, so there's no consulting him). I then spent the weekend in the throes of incredible headaches. I kept thinking about the potential side effects of pretty much every medication or treatment I've had. "May cause vomiting, diarrhea and severe headache." Saturday night was pretty much that, simultaneously. Although the vomiting was probably from the painkillers, which I think I've mentioned before, I hate taking. So let me add I was dopey and emotional from taking those and finally I was clawing for the steroid bottle. Now, I'm not a fan of steroids either. I have a big round face from this little bit and they play with your blood counts. But they work for when your brain tissues are trying to explode out of your head so they seem to have their place. At some point, I was able to sleep a little I guess, the only good part about painkillers as far as I'm concerned. Sunday of course was mostly spent in bed feeling utterly defeated and beat-up, but I did take my steroid, and was able to make a short foray out with the Hunter-Cobbs to look at a house (I have been watching WAY too many Househunters to miss out). Still some headaches, but not the reduce-me-to-tears kind. And Sunday night, I actually slept through the night.
Today I had my regular appointment with my team. The attending was very disappointed that my furuncle had not been lanced, even though I assured him it was getting smaller and the pain was absolutely gone. "But it's still there! Ah, I just want to get in and do it myself!" He came out of my nose all excited. "Don't you just love popping these things when they're on your neck or whatever and all that pus comes out! Oh well." He added rather hopefully that it may rupture on its own. We discussed that I had decided to finish out the steroids given recent events, and he agreed, "Well yeah, take the dang steroids." Then there was a lot of discussion about the future of my Ommaya injections that doesn't bear repeating. But I will have one more before I leave here. Oy.
SO that's what's been going on lately. But I have to say, today was really weird. Nothing hurt. No nausea or headaches. I'm still physically weak, but there was no bone-crushing fatigue. I had energy to make lunch for Luna which surprised her, and an almost-normal mood. I laughed with Jo about something. I verbally guided Brett through an hour-long yoga practice. I wrote this blog. Even my doctor said, "Well you look perky." I can't remember the last time I felt like this, but it was a much-needed glimpse at what getting better looks like. I honestly haven't seen it since the transplant, I've gotten so used to some kind of pain or total-body-shut-down every day. I don't know why it happened or if I expect it to last, but I hope I don't forget this feeling again.
Love to everybody.
Edited to add: Today is day +75 post-transplant. Wow. Don't know if it feels longer or shorter.
Saturday, November 27, 2010
Umm...hello
This blog has become like a creaky old sign that no one reads covered with spiderwebs and swaying in the wind and for that I partly apologize. But remember...you were amply warned at the beginning! I guess the reason for the dearth of posts is that every day is so different, and frankly, there aren't a heck of a lot of awesome or fantastically exciting ones. It makes me feel unlike myself and prone to doing macabre things like reading "The Road" and staying in bed all day watching documentaries on vanished ancient peoples or the origins of the universe or Ghost Hunters. Or worse, House Hunters, where I get angry at every damned granite counter top. I don't laugh or smile much and I can even see in pictures how out of practice I am. I am so unfunny that even Luna fake-laughs at me...this ridiculous cackle that embarrasses us both a little. It makes it hard to write because who wants to hear about that crap? Although you just did. So, onto the physical updates.
My counts are still holding in the normal-ish range although I am still not making red blood cells very quickly. I had a transfusion last week that I really needed. Fatigue still plagues me. I am getting a tiny bit stronger and can walk to clinic again. But I HATE doing my physical therapy. I'm sure I'd be doing a lot better if I'd do my exercises or at least some yoga, but the motivation is elusive if not impossible to find most times. It makes me feel lazy and guilty. Getting in the shower takes all my energy. Of course, Seattle in the winter is not a very happy place to recover. It could be (weather aside of course) but everywhere that holiday events are going on are places that are probably too crowded for me to go. I foresee a lot of driving around looking at lights in my future.
I sound like such an ingrate. I hate this.
What else. My mild GVH rash is gone although my skin seems really red all the time and occasionally I am randomly itchy. But it's not much to write home about. I have had some stomach issues that don't bear retelling but they seem to have mostly resolved. Other GVH has yet to show up, but a little would be okay probably. Just as added insurance that the graft is also still ready to fight any leukemia that pops up. I had another Ommaya injection on Tuesday and my doc put me on a new steroid regimen for it that will hopefully control the excruciating back pain better over the whole 2 weeks of the chemo release this time and I won't have the long set-back I had before, which I don't even know if I mentioned in my last round of belly aching. It may soothe you to know that my doc will be in Cabo that entire time. Sure makes me feel better.
I managed to skip the 2 month wait for the psychotherapist and now see her weekly. She's really helpful in helping me manage my expectations for recovery. Which is going to take a really long time, probably 6 months to a year to just regain energy. Mentally, who knows. I would hope I can return to my yoga practice, but I admit that my therapist and I have also discussed other options in the meanwhile. I've never been on anti-depressants but am trying to keep an open mind... anything that could help me on one front could help me fight another better. In the nearer meanwhile, I have been more diligent with breathing and relaxation practices which at least is helping me sleep a little better.
For Thanksgiving, we had 7 guests: my aunt from Montana, my aunt and uncle from Minnesota, my parents from Carson City, and my aunt and uncle from Arizona. It was great having them here, even though I was mostly propped up in in the living room like a giant doll not really entertaining anyone. But we knit and lounged around and watched Luna spaz out for a few days so it was nice having them here. They did all the cooking and it was great. I even made an arduous walk down to REI with them, which involved lots of stairs. They all left this morning and needless to say, I've been in bed all day today. I want to include a nice paragraph of gratitude in this blog, but I just can't. It's too too much. Too many people have done too much. You jerks! I am supremely grateful to be here still. The fact that I am is primarily due to Brett. It's absolutely ridiculous what he has to do for me all day every day. And my sister; we'd be lost without her help with Luna (and my morning coffee), and Luna, who helps me up from chairs and sits in bed with me for breakfast and watching Dora the Explorer every morning and invites me into her room to "play" at night. And I have to send my deepest thanks to the cord donors that saved my life so far.
For those who are counting, I'm at 60-something days post-transplant. So clearly I'm not counting. My day 100 will be Dec. 31, I think. I'm not sure when I'll be officially cleared to go home, but barring infections and etc. it should be somewhere around there.
On a final note, one day at clinic I met a guy 11 years post-transplant. He wasn't a lot older than me and was doing great. It was inspiring. The next day, I met a girl in the elevator who was probably 18 or so who was 100 days past her 3rd transplant and giddy to be finally going home. I guess that's why they tell you to take it day by day. The range of possibilities for the future is so overwhelming.
I hope everyone had a wonderful Thanksgiving. Thank you all.
My counts are still holding in the normal-ish range although I am still not making red blood cells very quickly. I had a transfusion last week that I really needed. Fatigue still plagues me. I am getting a tiny bit stronger and can walk to clinic again. But I HATE doing my physical therapy. I'm sure I'd be doing a lot better if I'd do my exercises or at least some yoga, but the motivation is elusive if not impossible to find most times. It makes me feel lazy and guilty. Getting in the shower takes all my energy. Of course, Seattle in the winter is not a very happy place to recover. It could be (weather aside of course) but everywhere that holiday events are going on are places that are probably too crowded for me to go. I foresee a lot of driving around looking at lights in my future.
I sound like such an ingrate. I hate this.
What else. My mild GVH rash is gone although my skin seems really red all the time and occasionally I am randomly itchy. But it's not much to write home about. I have had some stomach issues that don't bear retelling but they seem to have mostly resolved. Other GVH has yet to show up, but a little would be okay probably. Just as added insurance that the graft is also still ready to fight any leukemia that pops up. I had another Ommaya injection on Tuesday and my doc put me on a new steroid regimen for it that will hopefully control the excruciating back pain better over the whole 2 weeks of the chemo release this time and I won't have the long set-back I had before, which I don't even know if I mentioned in my last round of belly aching. It may soothe you to know that my doc will be in Cabo that entire time. Sure makes me feel better.
I managed to skip the 2 month wait for the psychotherapist and now see her weekly. She's really helpful in helping me manage my expectations for recovery. Which is going to take a really long time, probably 6 months to a year to just regain energy. Mentally, who knows. I would hope I can return to my yoga practice, but I admit that my therapist and I have also discussed other options in the meanwhile. I've never been on anti-depressants but am trying to keep an open mind... anything that could help me on one front could help me fight another better. In the nearer meanwhile, I have been more diligent with breathing and relaxation practices which at least is helping me sleep a little better.
For Thanksgiving, we had 7 guests: my aunt from Montana, my aunt and uncle from Minnesota, my parents from Carson City, and my aunt and uncle from Arizona. It was great having them here, even though I was mostly propped up in in the living room like a giant doll not really entertaining anyone. But we knit and lounged around and watched Luna spaz out for a few days so it was nice having them here. They did all the cooking and it was great. I even made an arduous walk down to REI with them, which involved lots of stairs. They all left this morning and needless to say, I've been in bed all day today. I want to include a nice paragraph of gratitude in this blog, but I just can't. It's too too much. Too many people have done too much. You jerks! I am supremely grateful to be here still. The fact that I am is primarily due to Brett. It's absolutely ridiculous what he has to do for me all day every day. And my sister; we'd be lost without her help with Luna (and my morning coffee), and Luna, who helps me up from chairs and sits in bed with me for breakfast and watching Dora the Explorer every morning and invites me into her room to "play" at night. And I have to send my deepest thanks to the cord donors that saved my life so far.
For those who are counting, I'm at 60-something days post-transplant. So clearly I'm not counting. My day 100 will be Dec. 31, I think. I'm not sure when I'll be officially cleared to go home, but barring infections and etc. it should be somewhere around there.
On a final note, one day at clinic I met a guy 11 years post-transplant. He wasn't a lot older than me and was doing great. It was inspiring. The next day, I met a girl in the elevator who was probably 18 or so who was 100 days past her 3rd transplant and giddy to be finally going home. I guess that's why they tell you to take it day by day. The range of possibilities for the future is so overwhelming.
I hope everyone had a wonderful Thanksgiving. Thank you all.
Monday, November 1, 2010
Better days, for now
I actually don't have a lot extra to add to this post, just a couple of good things. Anything can turn on a breath in this game though, so I try to remember I can be back in the hospital with a fever at any moment. But I've kind of been relearning the old one day at a time trick that I learned when I first had leukemia. I'm kind of learning to deal with yet another new kind of normal. And I'm sure it won't be the last.
By the way, I reread my older posts last night and I don't know how that incoherent drug-induced post after transplant made it past the editors. I also suspect that I sent some questionable emails but I'm too scared to check my sent box so let's just put it behind us if you received one, hmm?
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