17
Nov
16

not the best

It’s been a bit of a tough one for me today you guys.

All my Important Numbers are trending in the wrong directions again today.

Not significantly, there’s no cause for alarm or anything, but it’s certainly not good news.

To add insult to injury, the steroids are causing my body to retain a lot of water. I woke up with my face really swollen and puffy. I look like I weigh 60lbs more than I do. All of my skin feels too tight. It’s uncomfortable, but I’m also being a little sensitive about it maybe. I mean, I’m on Day 11 of not showering (I can’t with my central line catheter in), there’s only so clean I can get with washcloths and soap and hospital wipes — so, I feel pretty disgusting. Not to mention I’m already feeling exceptionally betrayed by my body, so this is just a little rude.

I’m relieved that I’m still feeling pretty good despite how sick my numbers say I am. But it’s hard to be going through all of these treatments and not see them working very well. That news was a little unexpected this morning and I’ve had a hard time getting over the funk of it today, making everything else a little harder to deal with. I think it felt especially harsh because I woke up feeling SO GOOD this morning! I got a full night of sleep last night! I fell asleep after my vitals check around 11PM and didn’t really wake up again until we blood draw at 5:30AM! Then I fell asleep again! I really SLEPT last night. My energy was great when I woke up, despite my fat face. I was on track for another great day–then got the news about my labs and it just sucked the wind right out of my sails.

Yesterday was a really good day. I was in great mood all day and didn’t have any weird shit happen to me. Kendra came to visit, then Molly and Gretchen came to visit, they wore we me out and I slept. Jess stayed with me last night and pruned my flowers again. Things really felt like they were going to turn around. This backslide is hard.

Josh wasn’t singing when he came in today. We kind of glossed over the significance of my numbers going backwards. My attending and my oncologist have a difference of opinion on how much my failure to produce blood is the chemo’s fault vs my bum kidneys’ fault. But, they draw blood from me every morning, and then take more every other day, it’s no wonder it’s still going down. They’re going to start having me take oral¬†iron supplements now and see if it helps — so far I’m not having any sensitivity to that, the way I did the IV iron–THANK GOD.

Tomorrow will be better.

At the very least, we’re finding out early that stuff just isn’t going to work and can make a new more radical plan before I waste too much time getting treatments that don’t help as I hurtle towards the inevitability of a kidney transplant. But let’s give stuff a little more time to work–maybe I am just chilling in the nadir and I have a nice boost coming.

Plasma treatment was uneventful today. I got another surprise nurse (where is Roche?!). She benadryl+steroids me again, so I took a nap after. The whole thing only took an hour and a half because my blood count is so low, hahaha. So, that’s nice I guess?

Looking forward to some visitors tonight — I’m in desperate need of hugs and distractions. Send cute animals!

View from my room is still the best.

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