I miss laughing. I've had a pain in my diaphragm or ribs, I don't know which, for weeks that gives me trouble every time I laugh, yawn, cough, cry, or vomit. This pain wasn't the only reason I haven't written in so long, but I think it was a contributor. To catch you up on what has happened since my last post: I went home from the hospital feeling weak for some number of days, then started having this pain that sent me back to the ED (no one in the know calls it the ER anymore, it's the "Emergency Department"). It seemed for a while that the pain was related to my gallbladder or lung, and I stayed in the hospital for maybe another week waiting to find out what was wrong with me. Someone had done the math and figured out that I had already spent just about 100 days in the hospital since my diagnosis. I'd like to think it was exactly on day 100 that I couldn't take it anymore.
On day 100 or thereabouts I woke up watching the clock and telling all my medical teams that I wanted to go home. Luckily, having determined the pain I had was probably musculoskeletal, they couldn't come up with a good reason to keep me in the hospital. I was still waiting on my oncologists to give the green light, but I called my mom in for a preemptive pack-up. We were headed out the door when Dr. Bowles came walking down the hall. I felt like I just got caught skipping class, but thankfully, Dr. Bowles didn't object to my leaving either.
So I'm home now, with Brent, Pisco, and my two brothers who came home for the holidays. I wish I had the energy to enjoy it all, but I mostly just feel weak and tired. The most energetic thing I've done since I've been home was go swimming at the local rec center. But the pool has a lazy river, so for swimming, it's the laziest kind I can do.
I'd been dreaming of doing frivolous, relaxing things since being in the hospital. Getting a facial was at the top of my list. So the other day I took Daniel to Massage Envy so he could get a massage and I could get a facial. Maybe the layers of dead skin on my face would finally go away. I filled out the questionnaire when I was waiting for my appointment, including the innocuous medical history portion. I wrote down that I was getting treatment for leukemia. When my name was called I followed a woman back to the cozy facial room, where she told me I couldn't get a facial due to my cancer treatment. In fact, if I had had chemotherapy in the past six months, they wouldn't touch my face. I couldn't get a straight answer about why, but I figured it had something to do with them getting sued by someone in the past. So I left, and while my brother was getting a massage I walked around the parking lot perusing the local TJ Max. Then I went to Aveda and got a couple samples of their most hydrating skin line and went home and gave myself a crappy facial.
All the medical crap I have to do is done as an outpatient now. I have a nurse who comes to my house twice a week to collect my blood, and I get control of all my meds. That might be a mistake given my state of absent-mindedness, but Brent helps keep me on track.
All in all, it's been a pretty quiet, mellow couple of weeks. The only bad news I got came yesterday, when Dr. Bowles called to tell me that I'm still not in remission. Not after 7+3, not after FLAG-IDA, and not after GCLAM. My last biopsy showed I'm sitting right around 6% leukemia cells in my bone marrow. Not low enough for a trip to Seattle to get that transplant. Dr. Bowles gave me four options, one of which was opting to quit treatment. Two others involve looking for a study to get into. So back to UCHealth, or Presbeterian St. Lukes. And if that doesn't work, Dr. Bowles is willing to try something home-grown back at the VA. More chemo, more drugs, more hospital time, more pain and discomfort. At least I don't have to deal with VA food for the time being. I'm pretty sure I survived on jello and lemon ices for two solid weeks.
If I'm lucky, maybe by the time I finally get into remission I'll catch the fine summer weather in Seattle.
On day 100 or thereabouts I woke up watching the clock and telling all my medical teams that I wanted to go home. Luckily, having determined the pain I had was probably musculoskeletal, they couldn't come up with a good reason to keep me in the hospital. I was still waiting on my oncologists to give the green light, but I called my mom in for a preemptive pack-up. We were headed out the door when Dr. Bowles came walking down the hall. I felt like I just got caught skipping class, but thankfully, Dr. Bowles didn't object to my leaving either.
So I'm home now, with Brent, Pisco, and my two brothers who came home for the holidays. I wish I had the energy to enjoy it all, but I mostly just feel weak and tired. The most energetic thing I've done since I've been home was go swimming at the local rec center. But the pool has a lazy river, so for swimming, it's the laziest kind I can do.
I'd been dreaming of doing frivolous, relaxing things since being in the hospital. Getting a facial was at the top of my list. So the other day I took Daniel to Massage Envy so he could get a massage and I could get a facial. Maybe the layers of dead skin on my face would finally go away. I filled out the questionnaire when I was waiting for my appointment, including the innocuous medical history portion. I wrote down that I was getting treatment for leukemia. When my name was called I followed a woman back to the cozy facial room, where she told me I couldn't get a facial due to my cancer treatment. In fact, if I had had chemotherapy in the past six months, they wouldn't touch my face. I couldn't get a straight answer about why, but I figured it had something to do with them getting sued by someone in the past. So I left, and while my brother was getting a massage I walked around the parking lot perusing the local TJ Max. Then I went to Aveda and got a couple samples of their most hydrating skin line and went home and gave myself a crappy facial.
All the medical crap I have to do is done as an outpatient now. I have a nurse who comes to my house twice a week to collect my blood, and I get control of all my meds. That might be a mistake given my state of absent-mindedness, but Brent helps keep me on track.
All in all, it's been a pretty quiet, mellow couple of weeks. The only bad news I got came yesterday, when Dr. Bowles called to tell me that I'm still not in remission. Not after 7+3, not after FLAG-IDA, and not after GCLAM. My last biopsy showed I'm sitting right around 6% leukemia cells in my bone marrow. Not low enough for a trip to Seattle to get that transplant. Dr. Bowles gave me four options, one of which was opting to quit treatment. Two others involve looking for a study to get into. So back to UCHealth, or Presbeterian St. Lukes. And if that doesn't work, Dr. Bowles is willing to try something home-grown back at the VA. More chemo, more drugs, more hospital time, more pain and discomfort. At least I don't have to deal with VA food for the time being. I'm pretty sure I survived on jello and lemon ices for two solid weeks.
If I'm lucky, maybe by the time I finally get into remission I'll catch the fine summer weather in Seattle.
I’m really glad you are home. I have your picture hanging outside my office with Info about being a donor. We think about you all the time. Thank you for continuing with the updates. Adam would like to knit you a hat, unless you are already drowning in hats (if so could he knit you something else?). Any color preference? Lots of love from Corvallis.
ReplyDeleteHi Sarah, did I read that right, you have a river in your pool? That sounds amazing. I have been trying to teach Alessa (little sister) to swim and it's so hard! You forget how hard it is to learn to swim. We've been practicing blowing bubbles underwater.
ReplyDeleteAs for the facial, sorry they were so weird. I'd give you a facial but that sounds dirty. Also I'm in California.