Wondering what I have been up to? Not much! Still battling the fatigue, although it is a little better. Generally I sleep 8 or 9 hours at night then I am either up all morning, and nap all afternoon, or I go back to bed after Al goes to work and sleep all morning. It is an exciting life. LOL!
It really isn't all that bad. The weather has been rainy most days in the last few weeks so sleeping is easy to do. I also know that my body is healing while I am sleeping, so I don't mind doing it.
When I saw the doctor 2 weeks ago, he said that fatigue is normal 3-6 months post-transplant. I was at 2 months then. It can persist longer in some cases, but I find that I sometimes have a day that I don't need a nap at all, so I feel it is getting better already.
I was experiencing significant muscle and joint pain. I took myself off of the Lipitor (cholesterol medication) I was taking to see if it was the culprit. It is somewhat better now, after 2.5 weeks, but I still have very sore shoulders, neck, hips, hands and feet.
The feet are my biggest complaint. I have peripheral neuropathy that manifests itself as constant tingling (I describe it as buzzing) in my feet. My toes and heels have reduced sensation, but are not totally numb. At night (and sometimes during the day if I walk too much) I get shooting pains in my feet and calves. The Lyrica is helping reduce the pain - I don't need to take pain-killers to sleep any more - but it is still somewhat debilitating. In addition to that, my plantar fasciitis has flared up (from walking around bare-foot) and I find that between the 2 conditions, I am quite limited in my mobility. :(
The doctor did not have my blood protein level tests back when I saw him last so we have not categorized my remission level yet. Regardless of the level of remission, I will likely be starting maintenance chemotherapy in the fall. This is a low dose oral chemo (Revlimid) that I will take indefinitely to prolong the remission period.
What this means is that although the stem cell transplant re-booted my bone marrow, it may still be producing some myeloma cells (Partial Response or Partial Remission). Or, if it shows that there are no myeloma cells being produced (Complete Response), the myeloma will become active at some point - in months or years. Once the myeloma levels reach a certain threshold, I need to begin full treatment again, possibly including another stem cell transplant. The maintenance chemo will slow down the production of the myeloma cells and will extend the time that I will be in a state where I do not need the full chemo treatment.
Despite the fatigue, sore feet and muscles, and occasional nausea, I really do feel good. I wake up every day happy and ready for that day's adventure. One thing that really stands out for me is to be thankful for every day that we have. You don't know what the future holds or how long you have on this earth, so you might as well resolve your past issues and live in the present. :)
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