Tuesday, February 10, 2015

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.



Anonymous said...

Susanna, I know you are trying. I went through this last year with my sister. Sometimes, you have to fix 5 things in order to get 1 that you can choke down. Then you just have to be willing to throw the rest out. I know it is counter-intuitive, and the thought of seeing 5 proteins in itself can make you nauseous, but if you can find one thing today, you have succeeded. May not stomach the same thing tomorrow, but that's tomorrow.
You are strong!

Nancy Fastenau said...

Or distract yourself with something else - I know easier said than done - but what the hell. Helping Zoey with her homework, talking to Bryan about the beer bar, building (or tearing down) something with Ozzy. Sometimes even your current "Housewives" saga. Time will pass and things will get on - whichever way they are going to go. You've done the hard bit or wait, you have a hard bit to go but hey, distractions can be fun. Right?

Aaron Grover said...

My daughter Elaina also told me I look like Caillou when I first saw her. You are not alone in your battles and thoughts of What ifs. I have them too. Makes things difficult, for sure. Keep fighting and moving forward. What's done is done. Can't change it. It's up to you (and me) now. All the best. You can do it.

Anonymous said...

Sometimes I think the "what-ifs" make us sicker than the "what-ares". Try not to focus on the success of your treatment, but rather instead on the strength and health of your current state. I love the movie "What About Bob" and how he is always reciting his mantra..."baby steps (onto the bus, onto the boat etc). It's true, you can run a mantra through your mind whenever you feel like you need a little extra nudge.
All the best to you and your family. Remember..."baby steps."
xoxo Brandi

Anonymous said...

"What about Bob?" was a funny movie.
Susannah, don't think in terms of what-ifs, baby steps is probably right (although Bob was crazy). You've taken the biggest hurdle already, now you're at home, surrounded by your loved ones and you can heal with their help and you can take your time too. I have two friends with MS and one of them swears that proper nutrition is winning half the battle. She researches meals and writes down how it affects her and what she should incorporate more and what to omit etc. etc. It keeps her busy and she's become an expert in good nutrition. Heck, she even got some of her friends (including me) to drink a green smoothie every day and you know what? I miss it when I forget to make one for a day. Start with a green smoothie, Susannah! Pour some honey into it if it looks or tastes too "green".

Anonymous said...

I wish I could be Caillou