It has been 35 days since my transplant. Still hanging in there. Here is how I’ve been feeling:
Physically-Hands/body tremors daily from one of the drugs I’m on. It sucks. I’m super fatigued all the time, yet I have trouble sleeping. I’m working on it, but I have barely any muscle strength. I have constant heartburn, I don’t have much of an appetite, and I’m retaining water like a friggin sponge (likely from the 2 hour infusions every other day).
Mentally: I’m scared. Terrified actually, that this won’t work. I’ve asked numerous doctors and PAs whether or not they’ve seen a patient who relapsed from an auto transplant, and had a successful allo. Time and time again, I’ve been told “no”. My rational mind tells me that doesn’t mean it couldn’t happen, but it’s still really scary when it’s happening to you. I’m a little down that I can’t do normal things like normal people. Mack wants to go to the fair this weekend, go to the pool, the playground, etc. etc. I can’t really do any of those things, and it’s really hard. I know it’s for the best, but I would give anything just to be a normal person again. And yes yes, I know I will have a “new normal” blah blah blah, but it still hurts sometimes.
Last night I had a very vivid dream that Derek left me because he was sick of waiting around for me to get better. At the end of the dream, I died, and Mack grew up not remembering who I was. So this morning, I woke up just kind of feeling defeated. In the back of my mind, I think I feel guilty that Derek has been such an amazing supportive husband, and I have been sick 3 out of 4 years of marriage.
Financially it’s been a struggle. It just seems like every time we are feeling semi OK, something happens to set us back again. For one, I just received a bill from UH. I owe right around $58,000, which doesn’t include my bill from Anderson. As previously mentioned in my last post, this roof getting fixed is going to cost us more than I was expecting. I hate being a grown up sometimes!
Shout out and thank you again to the preschool moms who have been bringing us dinner during the week. I feel guilty about it, since I’m home I should be the one making meals for my family, but honestly it’s a huge help because I’m sooooo tired, all the days.
Also, I really am like half brain dead these days, and I can’t remember who I have sent thank you notes to or not. That being said, I sincerely apologize, and hope all of you know just how grateful I am for everything you’ve done.
But….the CAVS won, so I guess that’s all the really matters. That, and the fact that Mack called his-you know what-a “dilly do”, and his-you know what else-his “marbles”, which I found to be hilarious. Currently our dogs have the worst gas that ever was, so you know, I’m trying to deal with that too.
All the feels. All the days.