Day +28 The Worst Of The What Ifs

I'm wondering when I should stop referring to my +day, also known as how many days since transplant. Kind of like when you have a baby and you refer to her in weeks, then months, not knowing when to just switch to years. I am 89 months old, 356 weeks (give or take), but +28 days since my stem cell birthday.

So where have I been?

Home, finally, as of Sunday. But more than that I've been in my head, which is a scary place to be sometimes. See, my head is home to The Worst Of The What Ifs, with What If This Didn't Work? being the most requested single on this particular album.

Very cool cloud light with lightning mode.

Of course everything is made worse by the fact that the chemo knocked out my sense of taste, so I have had a terrible time eating. I've lost waaay too much weight and keep catching glimpses of Gollum in the mirror (although Ozzy says I look like Caillou so I have that going for me). Just eat! people say, shovel it down, who cares? But it's hard, harder than you would think when you can't taste anything and your throat closes up at the sight of protein. But I'm trying.

I'm trying. Same with sleep. I am so very tired, like bodily exhausted, but actual sleep is another thing altogether. I wake up every night around 2am, and then just lay there, playing that same top hit single on repeat, turning the stats over and over in my head, recalling stories of other patients who have succeeded, who have failed, comparing my story to theirs, what if, maybe this, I never thought of that. During the day I am weak, my symptoms made worse by the weakness, by the simple fact that I am recovering from chemo. I know this, I knew this, they said it would happen. They call it the roller coaster, the year following transplant when your symptoms get worse and then better and then worse again. But feeling these symptoms is scary, and for the record, I have always hated roller coasters.

Maybe some of it is that this is where I have to put down my proverbial sword and wait...and I suck at waiting. I mean, I never really dealt with my diagnosis, the anger or the grief, the insurmountable unfairness of it all. It hasn't even been a year. I dove head first into battle mode, trying to fix it, control the situation, and now I've done everything there is to do. Have I? Surely there is something more to do than just wait? Just relax? Think positive thoughts and eat protein?

So that's where I've been. This is harder than I thought it would be, physically, although that doesn't surprise me, but mentally, too, and that has thrown me entirely. 

But I'm trying. One month, or 4 weeks, day +28. I'm really fucking trying.

xo,
S