I spent the first two weeks upon our return with little desire to see anyone outside of family. Feeling this way surprised me, as I anticipated being eager to get out and see people. I saw my local hematologist mid November and was cleared for public gatherings, as my WBC count was normal. This did not bring me the excitement I expected, but rather a feeling of anxiety.
I am discussing this because I don’t feel like I can make a health update without first addressing what this incredible, terrifying and exhilarating adventure has done to my mind. When I felt that pang of anxiety at being cleared to attend public gatherings, I knew that I was going to have to be honest about why I didn’t want to get out and see people. It wasn’t because I was scared of their germs, but because I was/(am still just a little) feeling overwhelmed and depressed.
I’m not curled-up-in-bed, have-meals-brought-to-me kind of depressed. I still wear mascara to the grocery store most days. I expected that I would feel a little bummed when we returned and had already prepared my brain for it. I prepared my ego for the beating of going from glowing praise from all corners of the earth to laundry, dishes, dinners they hate, and e-mails/phone calls to return. I just didn’t prepare for the feeling to be as heavy and imposing as it has.
I could turn this into a thousand word essay about how international bone marrow transplant, isolation, stacks of C.S. Lewis and regular doses of internet applause can bring on mild depression, but I’ll let you write it. I am attacking these blues with very easy to manage daily to-do lists and today’s list includes “update the ninja blog and stop being such a melodramatic diva, for crying out loud.” It’s hard not to feel like a diva when a simple thing like a blog post makes you go wrist to forehead in a fainting fall.
It is easier to slug through these feeling when I know that my health is measurably improving at a steadily creeping pace. (I should totally write segues for the local news. Did you see what I did there?)
I’ve heard it said that symptoms of disease improve in the reverse order of appearance. This may not be true, but it has so far been my experience. I only started to use a cane in the last two years and the need of a cane left me while still in Russia. This improvement in my balance has led to change in the overall way that I walk, take stairs, and stand.
I still fatigue very easily, but it is a different feeling kind of fatigue. Heat does not bring it on and my cognitive thinking does not diminish with it. I suspect that it is lingering chemo fatigue.
I begin physical therapy after the holidays. I look forward to it as an opportunity to really measure my improvements. It takes 12-18 months to see the full benefit of HSCT, and I can’t help but be very optimistic when I consider where I am today, after only two months since transplant.
I am sure I could report on more, but I am going to go ahead and post this update as is before I can over-analyze it to bits and pieces. It continues to be a joy to share this journey to the other side of MS with you, even if we detoured for a spell. Thank you for all the prayer, the constant love, and the abundant support. I love you all and I mean just as much as ever. Have a very Merry Christmas and I’ll see you all in 2013.