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
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