Remember how I keep mentioning that sometimes we wait for the next bad news? It’s not intentional but there are so many things that could go wrong. The doctor thought long and hard before deciding on transplant because it can be like trading one disease for another. The number of possible complications is overwhelming. Our Doctor visit on Thursday included bad news. Not the worst news. I still don’t have cancer. I got the results back from my MRI. I have AVN (Avascular Necrosis) in both hips. I was told before that this was a possibility and the MRI confirmed it. I’ve written on the subject previously but essentially there is death to the tissue around my hip joints. And dead tissue doesn’t grow back. The ultimate treatment for AVN is hip replacement but we are not necessarily there yet. We are all waiting for what the orthopedic surgeon says. I also have a sacral stress fracture. I’m not sure how or when it happened but I’ve been having lower back pain. I had pain spasms in the dentist chair. Maybe the dentist broke my sacrum. The stress fracture is bilateral so it goes across both sides somehow. My physical therapist looked at the report and told me to use a walker when I can. I hate using a walker and a cane but they actually help me get around better and with less pain. I guess I have to use it.
Image of patterns of sacral fractures.
This blog post offers more questions than answers but that’s all we have too. I am taking this weekend to rest my back and leg, ankle and feet pain and see if it helps. I actually haven’t tried resting. After seeing my MRI the doctor asked how I’ve been able to walk and move around at all. Jeffrey volunteers that I’m stubborn and have a high pain tolerance. The nurse agreed on the stubborn part. I actually build in resting time but since I’ve haven’t been told otherwise I have continued to exercise in the pool and go to the store and walk outside when I can.
The other news from the doctor has to do with the prednisone and the 27 lbs Ive gained in a few weeks. My doctor is concerned because this is very uncharacteristic of me. As I’ve gone down on the steroids my weight has come up. There is a possibility that it’s just the accumulation of steroids in my body that has caused the fluid retention and “moonface”. I remember when Ashley Judd had to defend her puffy face because media is crap and accused her of too much filler. My face is more severe than that now but I’m going with the too much restylane claim. But she wrote a kickass feminist essay about her puffy face and I am empowered by her words.
Besides the physical appearance which means very little to my doctors and my friends and family. They are just happy that I’m not in the hospital and that I no longer have cancer in my body. To everyone’s credit no one has flinched to see me although my appearance is suddenly altered. Friends and co-workers have been incredibly respectful of my privacy. I’ve been here before with sudden weight gain and it goes away but the worst part is during. I’m so uncomfortable.
Back to why my doctors are concerned. Based on blood tests and protein levels in my blood (low) there could be GVHD in my kidneys that is causing protein to be released and allowing the fluid weight to accumulate on my body. I have been taking Lasix (water pill) to keep some of the fluid off but it’s become less effective and the doctor took me off for the weekend so that I can do a 24 hour urine test. This starts on Sunday and I collect ALL of my urine for a 24 hour period to be taken to 11th floor James and to the lab for analysis. I also am scheduled to see a nephrologist. There is a possibility of a kidney biopsy if there are indicators of GVHD of the kidney. My main hemotology doctor has determined that my body cannot tolerate the use of steroids for treatment of GVHD so we need to look at alternative therapies. I hate prednisone but the other therapies don’t sound great either.
My goal at the beginning of the summer was to be able to walk the Be The Match. That’s not going to happen. I’m going to be in a wheelchair but I will participate. Also, as a reminder, our team is large this year so far but we still have some fundraising to go to meet our goal. Last year our donations came in too late for our team to be recognized so if you are going to donate do it soon! I did not get team t-shirts printed in time cause I’ve kinda had a lot going on but I will have 200 wristbands for our team and everyone who wants one! I designed them myself and they include leukemia and Be The Match colors and the phrase “Live For Today”. As soon as they are here I will show them off. I am going to ask $1 each to help cover the printing costs of the wristbands.
Don’t forget to sign up if you are running or walking and make sure you get your donations in. August 17th is almost here and I’m excited to show our support for this organization and to see all my amazing friends who are coming out to support. Here is the link to our Team Perfect Match website: