I have lots of gray hair! I’m 4 months out from transplant. I’ve been resting at home and wrapping up a couple of courses toward my master’s degree.
I decided to drop my next course because I’m very tired and have trouble concentrating. I actually had to get a 6-week extension on one of my courses because it’s been a challenge for me.
My cold has improved quite a bit but I still have sinus issues….I can hear crackling in my ears which seems to be a eustachian tube issue. It’s getting better everyday so I think this last medication, allegra, seems to be doing the trick. This is my fourth round of meds to clear this up. I’m thinking it will be gone by next month…let’s hope so!
Since my last update I’ve had some bloodwork done by my primary care physician (PCP) because I’ve been having a lot of bone pain. It was bilateral in my shoulders, hips, knees and ankles. It was hard getting in and out of the car and transferring in general from sit to stand and stand to sit. Walking was also more difficult as a result. My doc gave me a referral to a rheumatologist who I will be seeing in a couple weeks. If she tells me I have fibromyalgia again I will scream! 20 years ago I was told that’s what I had and it turned out to be MS. Maybe real cases of fibromyalgia exist, I don’t know, but it seems to be that’s a label for “complaining woman disease” when they cant figure out what’s actually wrong with you. She sent me for blood tests to check my levels for arthritis, thyroid and estrogen/menopause but said to wait until the cold cleared up as that can affect blood tests. I think it was like 8 weeks of the cold at that point.
In the last week my shoulders and ankles have improved a lot. My ankles feel like I need to pop them, as they seem very stiff, and at night I find myself doing that in bed. I somehow popped my right knee so that feels much better but I can’t figure out how to do it again to my left knee! My shoulders are much better. When it first started I could barely raise my arms.
I figured I should just get the bloodwork done since my cold is improving so I went on Monday and got my results back a couple days ago. I’m waiting to discuss it with her but in reviewing the tests in mychart it does appear that I am in menopause as a result of chemo. I was prepared for that as I was warned it was likely to happen at my age as I was 41 at the time. The blood test also showed that I have some inflammation which I will discuss with the rheumatologist that I was referred to in a couple of weeks. She didn’t rerun my T4 which was below range but she did do another TSH which improved a little so I don’t know if she will address the thyroid or not. I’ve been borderline or subclinical on and off for 20 years and it’s never quite bad enough for someone to fix it. We’ll see what happens.
Everyone in the HSCT community talks about “the rollercoaster.” This is definitely a rollercoaster. I liked to think that I was going to be returning to work by now. That’s not happening. If I was working I would be calling in sick everyday. It’s hard for me to get going until almost noon lately. I’m extremely tired and spend like 12 hours in bed. I did start taking estroven for menopause symptoms like hot flashes and it’s only been a couple weeks but I can already tell it’s helping as the hot flashes have cut in half. It’s supposed to help with energy so I’m hoping that starts to improve but I’ll see what my doc recommends.
I see my HSCT friends on the summer board talking about how they’re doing….some are having similar symptoms to me that were in my transplant group, others after me and in the euphoric state of being grateful for the experience and noticing improvements and the great hope that comes with that. I’m still very grateful and noticing improvements but I also notice the rollercoaster and its unexpected twists and turns. I’ve accepted that I’m not a superhero and I’m not going to be able to push my recovery to happen faster than it wants to. So I’m resting and not fighting it.
It’s amazing how many people are pursuing HSCT and all of the facebook pages that have popped up and the countries that are accepting US citizens to have it performed there when they are denied here for clinical trial. It’s also amazing to me how many people are following us. This blog has been seen by thousands of people in 50 countries! Some of these countries I have never heard of.
My hope is that HSCT will become more accessible to those who are seeking it from our own country. The 21st Century Cures Act is an example of some legislature that would make regenerative medicine available faster. The FDA takes a very long time to approve lifesaving and quality of life procedures. There are amazing things happening with medicine and regenerative medicine….the blind are having stem cells planted in their eyes to see! The amount of lives that can be changed is astonishing. I really hate that others have to wait while they decline. I’ve been advocating with a friend for the REGROW Act which also strives to make regenerative medicine available sooner but the proposed act has some challenges.
Please use your vote in the upcoming election wisely. I can’t think of many issues more important than healthcare.
Thanks to everyone for the support!