Wednesday, January 9, 2008

Day +225

I've been taking a serious break from blogging because I feel like I've been repeating myself with the last few posts. I just haven't felt like anything noteworthy has happened. That's got to be a good thing.

January 9 is the one year anniversary of me being diagnosed with leukemia. My poor ENT had to call me with the news that the tests he'd had run on me the week before had come back strangely abnormal. I got a chance to thank him for running the tests in April. He admitted that he didn't know why he'd decided to have them run since he was sure that I just had an infection. Doctor's intuition, maybe. At any rate, I'm thankful that he did.

I spent the day like I do most others, just puttering around the house and trying to stay out of trouble. Nancy, you might want to skip this part. :) My transplant doctor surprised me last week by telling me that I could dust around the house. I had originally been told to avoid any activities that might expose me to air borne debris because of my immune system. It was in response to a question about being able to do a bit of painting around the house. I am that bored. I volunteered to paint trim, etc. around the house. I didn't rush right home and start cleaning--I'm not that foregone. I waited a day and I have to admit, I enjoyed myself. Okay, so I didn't actually dust, but I did push around the vacuum cleaner. Just in case, I wore a surgical mask, since I have been warned to avoid exposure to mold and fungus. In south Louisiana, you just never know what's in the air.

Last Wednesday, I had my fifth lumbar puncture in a series of six. The results of my fourth lumbar puncture showed rare atypical cells. The results of my fifth showed the same. I was told not to worry and that the team thought that it had something to do with the chemo drugs being introduced into my spine. I'll have an extra lumbar puncture after my sixth, just to test the theory. This last lumbar puncture was my least favorite by far. I can't remember how many I've had in addition to the series that I'm undergoing now, but they've mostly been nothing to remark on. It's taken me almost a week to recover from this one. When Jill was inserting the needle between my vertebrae, I could hear a grinding sound like someone stepping on salt in my head. Jill remarked on how "crunchy" my spine was that day. She had to exert a little more pressure to puncture the tissue and I could feel it. I was sore for a few days after. It was like I'd done a lot of heavy lifting. I'm fine today, but I'm really hopeful to avoid a repeat. It was still better than having a bone marrow biopsy performed by a small woman.

My EBV tests came back negative. Yipee! I'm having a CT scan next month to see if all of the PTLD tumors have disappeared, or significantly reduced in size. I'll also have another bone marrow biopsy to be sure that there's still no sign of cancer. I've also been told that I only have to see my local oncologist once every two weeks, now. This actually means that I'll only see him once a month since I go to MDA once a month. That means fewer needles. My poor arm veins are so scarred over, I'm surprised that phlebotomists are even able to get blood. Which brings me to a funny story.

I've been having some interesting days thanks to my skin GvHD. Every day brings a new "something", this could be a little red bump, or a small itchy rash, or skin scaling. For the most part, the steroid cream keeps it under control. Last week, I'd backed off to only applying it once a day and this has brought on a few flare ups. While I had my sleeve pushed up to get blood taken, I noticed a strange flat brownish blister on the inside of my arm, near my elbow. This immediately made me think that I'd just jumped to GvHD level 2 or 3. It was just a scary, "what the hell?" moment. So I told Chris and he got worried and wanted to go to the dermatologist immediately. He asked me to show it to him while we were walking to the elevator and when he saw it he got a small smile on his face. Of course I didn't think it was funny, but I decided to be a big girl and ask him what he thought. He pointed out that it was the scar left over from my picc line. He-he. I'd actually forgotten that I'd had one. Go figure. I'm glad that I didn't storm the doctor's office freaking out about it. My reputation is dodgy enough without hysterics. ;)

I'll see my local doctor next week and then it's back to MDA to see the dermatologist about my legitimate GvHD. I suspect that I'll be given ultra-violet treatments since the steroid cream didn't totally take care of my dry skin and rashes. That's the best I could do for today. Maybe something interesting will happen tomorrow.

1 comment:

Nancy said...

I know I wasn't supposed to read one part of your blog... but, you know, because I wasn't suppose to, I did. Yah, I cringed when you mentioned dusting around the house. I wouldn't dust or vacuum... but then again your immune system is better than mine. I do some light housekeeping but let my housekeepers do the big chores. Maybe Chris can dust and vacuum (sorry Chris)? Just stay outta trouble.. maybe I should send you some books! Take, n