Well it’s been one week since I was discharged home to recover from the transplant. I’m happy (and somewhat surprised) to report that other than feeling very tired all the time, I’ve been fine! No nausea at all since I’ve been home, so I know for sure my dry heaving and vomiting was entirely due to triggers from the hospital (smells, seeing the meds coming at me, etc). The gross taste in my mouth is still there, but it’s slowly going away thankfully. My appetite comes and goes, but I’ve maintained my current weight, which is a good weight for me. I do have tinnitus which is the most annoying thing ever, and hearing sensitivity, which may of may not ever go away, but which is common post transplant I guess. I have pretty bad insomnia due to all the meds I’m currently on, but hopefully once I’m off all the steroids, I can get some sleep.
I have been receiving an IV of magnesium daily-either at home or at Seidman-every day this past week, because apparently my body doesn’t want to produce any due to the hefty dose of chemo I received. I get really hungry usually after I get it, which is weird. Feels like a light switch turns on all of a sudden. My counts have been AWESOME. My transplant doc’s PA said it was really pretty amazing how good they’ve been so quickly after transplant. Derek and I aren’t used to getting good news, so we have been pretty happy with the results to say the least! The docs also told me to try to exercise and move around as much as I can when I’m feeling up to it, because it will help combat my fatigue. I’m happy to report that I went on the elliptical yesterday for the first time, and didn’t pass out 🙂 it was definitely slow going, and I was super tired afterwards, but I did it!
Mack seems to not care if I’m tired. I swear the minute he turned 3, he just said to himself, “fuck you guys. I’m doing my own thing from here on out”. He’s teetering on no nap these days, and I think someone must sneak in his room at night and inject him with sugar and caffeine, because he is NON STOP. I love him so much and he is so happy to have me home, but sheesh is it exhausting! It will be nice when the weather is finally warm enough so he can play outside, and when he can start pre-school, and be around other kids his own age. Poor derek though. He must have really had his hands full while I was in the hospital. It’s hard with two of us here helping each other, so I can’t imagine going it alone! Mack spends a lot of time in time-out these days, because he has decided that he will do the opposite of whatever we say, only he’ll stare us down while doing whatever he shouldn’t be doing, just to see what we’ll do. Ugh. I’m pretty sure trying to parent a 3 year old boy is not helping my fatigue! Bless all of you parents with more than one child. Holy shit.
It really sucks that I’m basically in “watchful waiting” status to see if this procedure worked or not, but hopefully my good counts are a sign of things to come. I’m really hoping that with my stupid ass spleen gone, combined with the transplant, that my odds of this working were greater than 50%, as suggested by at least one doctor! but I’ll still take 50%, as long as I’m at the positive end of that! I don’t know about radiation-I still have a mass in my chest which showed uptake on the last PET scan, and my transplant doc suggested 20 rounds of radiation-hopefully I won’t have to have it. I mean it would really suck to get skin cancer or breast cancer (common secondary cancers) after all of this! But my next scan is in a few months, and I’m terrified of course. Unfortunately, I think I will have anxiety the rest of my life, but shit, as long as I HAVE the rest of my life, I’ll take anxiety. They make a pill for that after all.
1. Hair growing on my head, and it’s blonde! I’ll take it.
2. No hair anywhere else (I can’t even remember the last time I shaved my legs), but this is also a con because my eyebrows and lashes are still MIA.
3. Starting back to work next week. Normal life once again, I hope!
Shout out of thanks to my kick ass nurses and staff at Seidman 3, who continuously check in on me to see how I’m doing. You guys rock.