Hey guys, Lea is back for an update (I told you things wouldn't change now that I'm blogging from home--which I'm LOVING, by the way). Well, Lea is doing great, but she still wants...more. Here, she explains:
It's Lea checking in and I am about to celebrate almost six months post-transplant! AwoooHOOO! Things are going well on the leukemia front--the latest PCR test came back as "undetectable," which means they couldn't spot any leukie cells (CML cells). As grateful as I am to be doing so well, I am also getting greedier (is that even a word?) What I mean is, I think some of my fear has left me and been replaced by wanting more out of my daily life and existence. At six months post transplant I thought I really would be getting back into the swing of things and normalcy would magically take over. It's not.
It is stated that 80% of full-blown allo transplant patients (those getting the cells from a donor), suffer from chronic fatigue. Well, I cannot function without a nap--keep in mind I am 35 years old not 105--and am not even allowed to return to teaching for at least a year! I am still on super high doses of immunosuppressant drugs, which makes me a very susceptible to infection. Also, I don't have any of the vaccines that you get throughout your life (they were wiped out with the super high doses of chemo), so I am a walking target for any nasty life threatening bugs. Plus, I take about 30 pills a day which all have their own lovely side effects.
I am not complaining, it's just that I am in a weird position right now. I am thrilled that the leukemia cannot be found and that I'm not bed-ridden like many people are at this phase, but I also feel like a bystander in life sometimes. I still have to avoid crowds, avoid being out in the sun at all, stay away from anyone who has been sick, and rely way too heavily on my amazing husband for so many things. I feel lucky but I feel frustrated. I think my drive to live more fully is helping me as I try not to be the "patient" but I am struggling on how to be a "survivor." Any suggestions on helping me find this balance?
With gratitude and maybe a little greed,
Lea
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