Its been a while since I’ve been able to post, and sooooo much has happened. I’m not sure where to start :)!
Well, I was able to be discharged from Duke’s ABMT Clinic on Day 15!!! I had en-grafted, WBC, RBC and platelets were all high enough for me to go home. It would take up to 90 days post transplant for my entire immune system to be back online, but I was able to go home with some safety precautions. I was still very sick from the chemo and was on several different anti-nausea medications to manage it, but for me nothing seemed to work for long. My taste buds were not working, everything had a strange unpleasant taste. My sense of smell was all jacked up! There were times I could cry because I couldn’t escape the “smell” lol, I can laugh now but God knows it was almost unbearable. You know part of being able to eat and enjoy food is the ability to smell and taste your food. So you probably guessed it, I barely ate for weeks! But, every week I saw small improvements. I am now able to eat more items and drink more fluids. My taste buds are doing better every day, its not 100% yet but I’m learning to be patient with myself and my recovery. I also had to deal with the effects of chemo on my brain, they call it chemo brain, sometimes its funny and other times it is very frustrating. I’ve found that taking flaxseed oil every day has helped greatly.
I’m at an odd place in my recovery. Most of the fog in my brain from the chemo has lifted, the nausea is greatly improved, my hair is trying to grow back, the discoloration of my skin is fading. Most people look me and think, Wow, how good I look for a transplant patient. I told a friend today, that looks can be deceiving! I’m doing physical therapy 2x a week, voice therapy once a week and massage therapy every week. The impact of chemo was great, especially on my muscles, my energy, my focus. Don’t get me wrong, I have many days that are better now, but I have to pace myself, relearn my body. I’ve been told that it can take up to 1 year to fully feel your “new normal” and to stop feeling the effects of fatigue. I still need help with little things, like food shopping, carrying bags, some house work, but God is still good!!! Not sure when I will be able to return to work yet, but I am now starting to think about it. This whole experience now has me thinking of other ways to make a living, but I’ve got to find a way to give back. A way to help and extend another life. Life if so precious and beautiful, full of wonder, I thank God everyday for my beautiful life.
I was told last week by my physician, that I have not achieved remission yet, but I am much closer than I was. My M-spike is now 0.20 – almost zero!!! It is recommended that I should do some post transplant maintenance – subq Velcade injections twice a month. I can live with that :), and it is my prayer and belief that in a few months I will achieve complete remission!
3 John 1:2 – “Beloved, I wish above all things that thou mayest prosper and be in health, even as they soul prosper” – We Are His Beloved!!!!