Hellooo! Greetings from Emory!
I've been pretty good about updating my blog but not so much on here. I just wanted to give you the quick and dirty on how I'm doing and where I am in the process.
It's Day +2, so that means that I got my cells back 2 days ago. They say that it usually takes about 12 days for engraftment, and that's why usually folks stay in the hospital for a couple of weeks after Day 0, transplant day.
Everybody's expecting me to have big mucositis problems in my esophagus, and they say that I should start to feel rather, um, "worse" (ok, my word, not theirs -- the didn't sugarcoat it) around Day 4, but it's definitely starting now. As of today I have a big lump in my throat and the insides of my mouth hurt and are tender. I'm doing all the mouth care, yada yada.....they're giving me extra stuff now that it's started.
My WBC is now 1.1, which is nice and low and headed lower -- all part of the plan, which makes me happy! Everything is going as planned and according to tried and true routine, so I'm feeling very comfortable and safe within this SCT routine. I got a potassium bag today, as my levels were too low. (And yes, I do now have a banana sitting right next to me -- and it seems pretty happy to see me if I do say so myself! Yes, I know I'm a freak.) I'm fighting not to chew the insides of my cheeks because they seem to be sort of puffy and well, chewable -- and tearable too, so I'm really working to control myself and not act like an irresponsible 8 year-old and chew them all up. Anyway, it's uncomfortable and a little painful, but I know it's going to get a lot worse, so I will take pains to suck it up and shut my complaining yap for now.
My blood pressure's still really high (170/112 from a deep sleep at 4 a.m., for example) so they're watching it. I'm retaining a lot of fluid so they'll give me more Lassex (sp?) today to help get rid of it and maybe that will help with the pressure, if it's volume-related. I do NOT have any high blood pressure problems in my life, and they know that, so they're chalking it up to the chemo and monitoring it but not really freaking.
Diarrhea remains a constant friend, so I'm gathering samples for them to test to make sure that I don't have any sort of viral infection in my bowels which would cause me to have to be quarantined and forced to wear bright yellow gown to identify me as infected. Now wouldn't THAT be nice! But really they're thinking it's probably still just from a combination of the chemo and my counts dropping.
My fingers have darkened and apparently will darken further from the chemo. Interesting stuff!
I'm tired and a little wobbly as a result of my lowered counts, and that will just increase as they get closer to the bottom. But then they'll go back up and life will be good again!
I'm doing great, I just wanted to share some of the mundane physical minutiae for those who could benefit from the frame of reference.
As I write this, my poor Lorraine is in the sky flying back to me, coming back from her grandmother's funeral. Grandma Romeo had been married to Lorraine's grandfather for 76 years; in fact, they'd just celebrated their wedding anniversary a week or so ago. What a gift, no???? He's in a fog now and quite withdrawn, so we're worried about the obvious. In a way, I find it beautiful that couples go together, but damned if it isn't awful for those remaining. Anyway, Lorraine's going to visit me straight from the airport then go home and pick up our dog (MAN, I love that dog!) and take him home and have some time to herself. That makes me so, SO happy!!! Then I'll have her all to myself again tomorrow. Bliss. (Interestingly enough, that's one of her nicknames for me! )
Love and hugs to all of you!
Friday, October 27
I'm going to start out with a quick cheat and paste an update here that I just wrote up over at the Hodgkins board. I'll try to update later on if there's more to add!