Day + 265
Most recent numbers:
WBC 4.5 – 11.0 K/uL: 4.9
RBC 3.8 – 5.1 M/uL: 3.21
Platelets 150 – 400 K/uL: 354!!!
I haven’t been avoiding blogging exactly. I’ve been blogging continuously in my head. It’s just the longer I take to put it down in words the more I have to say. Because the longer I wait, more things happen. It’s October. My birthday has passed. Another year older. A year has passed of which I have little memory. Is it psychological self preservation that causes the memory loss or is it just purely chemical from the chemo and other various meds? I’m not sure but I do know that I grieve the loss of this past year. It’s just gone and I did nothing but try not to die. I technically no longer have cancer. And there has been no cancer found in my body for over a year now. But I’m still reeling from the effects. The list of my physical conditions is overwhelming. I have a husband who takes care of everything for us including the worrying. He turns my vague memories into stories by telling me of things that have happened over the last year that I don’t remember. Some are funny but most are terrifying. I’m not sure how either of us have done it.
One foggy memory I have is from one of my recent hospital stays. I remember the dark room with just the bathroom light coming in. Jeffrey was right beside me. I had several vomit receptacles on me, around me and next to me. Instead of using those (since I was crazy, out of my mind sick) I leaned over and puked off the side of the bed and onto the floor. My sweet husband gets paper towels and starts to clean it up. I immediately feel regret and sadness that he has to do this. It sucks and yet he is there with me every time. He said that he doesn’t mind the vomit clean up because a hot blonde nurse came in to give me a sponge bath. All I remember of this is the smell of soap and the feel of bubbles on my legs. Jeffrey says it was way more involved than that.
Since my last blog post it has been up and down. It hard for me to keep perspective when I thought I would be better by now. I know that I am still considered fresh out of transplant but I’m frustrated with trying to get back to normal and often failing. It seems like every time I start to get better and I start to think about the future and getting stronger there is something that comes along and knocks me down and I have to start over again. I’m still trying to get over the effects from the steroids. My kidneys have checked out fine. My lungs have also passed all their tests. My blood counts are normal or close to normal. The doctor thought I had GVHD in my intestines and on my legs but I’m doing okay and haven’t needed meds.
I have permanent damage to my hips but thankfully I have little pain due to the avascular necrosis. I do have moderate pain in my joints but the cause is so far undetermined. In addition to the rib and sacral fractures I also had a spinal fracture. That has mostly healed with rest. With all this damage my orthopedic surgeon sent me for a bone density scan in addition to repeat MRIs. I was told that I have the bones of a 70 year old woman due to damage from radiation and chemo. I was given an IV treatment to help build my bones. This med is called Zometa and is often used with cancer patients. I was told that side effects were minimal.
The next morning I woke up with severe pain in my bones and joints. It was so bad that all I could do was wake Jeff up with my voice and ask him to get me pain pills. He obliged and also brought the thermometer. My temp was 102.6. I texted the doctor even though it was early morning. She called me back immediately and said to go to the ER because the clinic was not yet open and I couldn’t wait. Once again we called Grandma to babysit, packed a couple things and headed to OSU medical center emergency department. When the new James cancer hospital is open at OSU there will be a separate ER for cancer patients. The general ER is frustrating for us because they are scared of me and sometimes over-react. The good news is that we never wait. I have a VIP ticket and always get right in to triage and get a room immediately.
They ran all the standard tests including blood cultures and chest x-ray. The ER doc went immediately to worst case scenario and threw out words like “neutropenic” and “sepsis”. I’ve been both neutropenic and septic and I knew it was neither of those. The fever was brought down with Tylenol and it was gone after 2 days. It took a 3 day stay in the hospital for them to determine it was the medication that caused the fever and not an infection and let me go home.
Although my body is still trying to recover from this summer’s steroid dosages and I may have a touch of joint GVHD, I am having a great time being back at work. My co-workers are all supportive even though most don’t know my full story and my students are amazing. My memory is weak in some areas but I amaze myself on how easy it was to fall back into my role of Speech Therapist. I’m still good at my job and I still love it. I may have to sleep until noon on days following my work days but it is worth it.
Today’s theme song:
“And it’s hard to dance with the devil on your back”