It's been so long since I did an update on my health that I don't know where to start. When I went to my 1-year-from-transplant doctor appointment, a plan for the coming year was laid out for me: labs drawn each month, going to LDS Hospital for a clinic visit every 3 months, and bone-marrow biopsies every 3 months. The risk for a relapse is high within the first 2 years of remission. For this reason, Dr. Peterson (primarily) and my other doctors agreed that doing regular biopsies would help them monitor my progress and possibly find problems before they became full-blown leukemia or something else. The plan has stayed the same for my labs, and my labs have been looking great! My numbers still fluctuate a little, but nothing that has concerned my doctors. I had my biopsy in May as planned. Recovery was long!
Usually, after a biopsy I am sore at the site for a couple of days and then notice the bruise for a couple of weeks. Nothing too bad. After my biopsy in May I had a lot of pain. My recovery was not the usual! Worse than the pain was the numbness. My left butt cheek (never one to mince words) was numb for about a month; additionally, I couldn't sit for more than 5 minutes without pain and numbness. Over time the pain has subsided and the numbness has gotten better, but both are still an issue. When my coordinator, LaDee, called to schedule my biopsy for August, I told her about the issues I had after my May biopsy. She discussed the sitution with my doctors and PA's at "tumor board" (a weekly meeting where all medical people at the clinic discuss the patients) and it was decided that my biopsies would not continue as planned. There is not data stating that doing a biopsy every 3 months will "catch" a relapse before it hits full force. I could have a clear biopsy one week and a week later have acute leukemia. Dr. Peterson still wants the biopsies done, but he, and my other doctors agree that the problems the biopsies cause are not worth the "possible" rewards. I hope that all made sense. I am fine with not having biopsies. We just don't mesh!!!
My thyroid is still an issue. I was going to a doctor in Salt Lake, but was not too impressed with him. So, I decided to go to Dr. Wood here in town. I meet with him next week. I know my TSH and FreeT4 are off (for those of you familiar with those labs) and that my meds will have to be adjusted. I do feel a lot better than I did early this year. I am in awe of how much your thyroid controls/affects. When my thyroid was waaayyy low: my hands hurts so bad that I couldn't stand to open and close them, my legs ached, my skin was so dry (especially my face and eyes), my hair was falling out, my eyelashes fell out, and I had absolutely NO energy. This is what my eyes looked like when my TSH was so low:
This picture doesn't do it justice; my eyelids were so red and hurt so bad! I think everyone thought I was crying all the time. No matter where I was or who I saw (other than my family) I was asked, "are you okay?"
I am feeling sooooo much better now!!! I know that I will feel even better when my thyroid is completely regulated (that will happen, won't it?).
The biggest issue I am dealing with is my muscle atrophy/hip/scar tissue/back/??? problems. I discussed these issues at length with Dr. Hoda and LaDee at my appointment in August. This was the breakdown:
1. I have had 13 bone-marrow biopsies in the same location. Can you say scar tissue.?. My biopsy in May was the last straw.
2. I gained so much weight so fast that my back is not happy. Bless Dr. Hoda's heart. He told me that it is not my fault that I gained so much weight - that when your thyroid quits working you have no control. I accept his explanation for the most part; however, I think I probably ate too much pumpkin chocolate chip bread. The remedy for this is to get my thyroid under control and to get my fanny in gear.
3. My nerves have been damaged from the biopsies and lumbar punctures. So, I had an MRI the same day as my appointment in August. The purpose of the MRI was to find out if there was anything visible, like a mass, affecting my nerves. I followed up with a neurologist. He was a quack! Honestly one of the most bizarre appointments I have ever had. Nothing was determined, but I did learn a little bit about looking for a coincidence and doctors not wanting to be sued.
4. Remember my hematoma:
I remember it so well! Another picture that just doesn't do "it" justice. The pain was unbearable. So much so that I went back into the hospital for pain control. I used a walker for awhile and luckily still have it. I have used it a couple of times since May. This particular experience left my left leg much weaker than my right and seems to be all tied up with my nerve issues.
What to do about this muscle/hip/scar tissue/back thing? I don't really know, but I think I am on the right course. I am doing physical therapy, massage, chiropractor, and trying to get stronger. My balance is off, my endurance is poor, my muscles are weak, stairs are still difficult - but, I do recognize that all of these things are better than they were. I have to remind myself that it wasn't too long ago that I could not get out of the bathtub by myself, I could not skip, and I could not get both feet off the ground to jump. I am thinking that numbness is going to be my friend for quite some time. Hopefully, the pain and burning from the numbness will decrease over time.
There you have it! My health is better than it was. Leukemia is still in remission. It's just a matter of dealing with and working through the residual effects from my treatments.
Much love,
Mel
