So it’s been a while, huh? I keep telling myself that “today” is the day I write an update on the blog. And then I’m downstairs, watching TV with whoever is watching me, and the 2 sets of stairs between my laptop and I might as well be infinity distance away. I blame the pills. I did not have a fun time trying to cope with the enormous pill regime they have me on. I think I take something like 30 pills a day, and at a ridiculous set of timing sets. 7, 8, 9 am, 2, 8, 9, and 10 PM are all times I have at least 1 pill to take. Sometimes as many as 9 at once.
But, we have a ton of stuff to cover. Enough excuse making. On to the meat!
In case you haven’t spoken to me in the interim, I did in fact make it home, with plenty of time to spare for Christmas. Although I think my family and I are going to do a second Christmas or something, because everybody was swamped for basically all of November and December. I managed to get my mom a kindle (who, despite protesting “I like to turn the pages” before receiving it, is loving it. Stop waiting people, and get one). My sister got me a new phone (Galaxy Note 2 – it’s comically large and I kinda love it).
But yes, I am home at my parents house if you want to swing by and visit, I’m home every afternoon and evening. I’m also on house arrest. So unfortunately, I can’t visit anybody yet. In the words of my wonderful doctor: “If you’re not here [at MSKCC], you’re at your parents’ house. Understood?”
Living with your parents after living on your own is a rough transition. Luckily I have amazing parents. After some initial rough patches, I think we’ve settled into a rhythm that works. It also doesn’t hurt that I’m finally starting to feel a little bit more normal, but more on that later.
So, since we were here last, lots has happened with my transplant. I.e., nothing, pretty much. I’ve been going to MSKCC 3 times a week in the morning to get an infusion of magnesium and some saline, and just get all my drug levels checked. I need the magnesium because one of my super important pills (Cyclosporine – it prevents denial of the graft and graft denial of me) ends up making my liver process less magnesium than it would otherwise, so I have to take 9 magnesium pills a day, and go back 3 days a week to get a stupid infusion.
That’s basically been it. Felt crappy and nauseous all the time, kept having to struggle to get to MSKCC early in the morning, and was generally not in a good mood to begin with.
Oh, funny story. Ya know how I’m supposed to avoid sick people, and crowds, and wear a mask and such? Guess who exposed me to this flupocalypse that’s destroying NYC now. Dr. Barker. As in. The head of the transplant department, Doctor who should PROBABLY know better. Oh well. I got put on an emergency course of tamiflu just in case. That drug, on top of all my others, gave me a really solidly crappy 10 days. But, no flu! So that’s good.
Another interesting story; Cyclosporine (which, if you remember, is the drug that made me sickest in IV form at the hospital) also has the side effect of causing facial hair to grow. So now I have a pseudo mustache/soul patch thing going on. And my regular hair is starting to grow back already…it wasn’t supposed to start for 3 months, so that’s about a month ahead of schedule. I’ll take it. Not having hair means I have to wear hats, and I hate wearing hats. Oh, and that facial hair grows on females that take the drug too. So, it could be worse for me.
So that was it. Dr. Barker just got back this week (obviously she couldn’t come back to MSKCC until she was cleared by a medical team), and we made some changes. She suspects that I have a touch of upper gut GVHD. That would explain why I’m still having trouble eating and drinking enough, and why I basically was perma-nauseous all day. So they did an endoscopy on me on Thursday, which I’ll talk about, and put me on a light steroid. It already has me feeling better. In fact, it’s probably responsible for this post getting put up.
Other than that, no news to report on the transplant end. It’s pretty much progressing as expected, no real curve balls.
I still have my Hiccman catheter. I’m really looking forward to when they rip this thing out of me. The sutures that are holding it in place are starting to itch something fierce.
Finally, I got an anesthesiologist that didn’t play around. They wheeled me in, put me straight onto a mask of oxygen, and had me taking big breaths while they put some heaven into my IV. Last thing I remember is the nurse asking me to put my hand at my side (it was on my stomach), and then I was back in my room, waking up. Throat was scratchy, for sure, but otherwise, I was pretty ok. I wouldn’t be afraid to do this procedure again. Which is a good thing, because I almost certainly will be needing to do it again later, to confirm that the GVHD is cleared up or not.
Moving Forward, and explaining the title
So, more “hurry up and wait” for me. I have to stay with my parents until I’m well enough to go take care of myself again. So, we sit around, hope that this upper gut GVH is the only set of symptoms I get, and try to make it to Day 100. That’s the big day. The first big milestone. I don’t really know why, but it’s the cut off for acute GVHD. Anything after 100 days is considered chronic. So that’s the time when you can *start* tapering off medications you don’t need anymore.
As for the title, I just feel like everyone was just so happy that I was going home, but all I could think about was “I wonder when and how much GVHD I’m going to get”. Like, the hospital portion of a stem cell transplant is certainly no joke, and nothing to just gloss over, but for me, I just felt that the hospital stuff I could deal with. You know you’re sick, you feel sick, and there are people there to help you feel less sick. I don’t know. The hospital all makes sense, after a fashion, in my brain.
It’s being on house arrest. Having people in your space 24/7. Being back in a familiar setting, but not even being able to do simple things, like use the same butter as the rest of the family. It’s familiar, but foreign. I’m not supposed to drink from the water cooler in the house because the spigots harbor bacteria.
That, coupled with the fact that I’m more afraid of severe GVHD than I am of catching some sort of virus or bacteria from the world, means that this is the period that I feared most before the transplant even started. Sitting. Waiting. Not knowing if something is a new symptom that I should report, or its just my body still trying to cope with the torture of the last few months. It’s not a good time.
So for me, while getting home was great, and I’m thrilled to be out of the hospital, I’m not doing any victory dances yet. I’m on the hook for this whole “leukemia” nonsense for a good amount of time yet. The crazy part? I technically don’t have cancer anymore. I can’t accurately describe myself as having AML, because technically, I don’t have it anymore. This whole experience is just surreal.
Anyway, 1300+ words is enough of an update, I think, so I’ll say my farewell here. And to all of you contacting me, via text, email, facebook, whatever, know that you put a smile on my face every time. I’m forever grateful to my family and friends for being the best support group I could ask for.
Soooo good to read another update!
I’m sitting here reading your blog and tears of joy are running down my face. So glad
To see your up to blogging. 2012 really sucked for our family but get ready for a come back
Strong in 2013 with all good news! Enjoy the football games today. Always thinking of you
Love Your Godmother xxxx
So glad to hear you are doing well. I have thought about you often. Keep on keeping on 🙂
Hi great to see you in print again. Just say the word and we will be there. Or maybe you did? It seems like forever since we all saw you. love you xxxxx
Rock on my man…Rock on!
Thanks for picking up the laptop again. Looking forward to the next entry……you are correct, you do have amazing parents!!!!
2013 is lookin good.
Thank you and I wish I had some magic words to say how much it meant to me. I cried and cried while reading this. I had two stem cell transplants in 1997 back to back – it took me over a year to eat anything but Ensure! – yuk – the the hickman – the three lines in my chest – i had the one in for 8 years or longer – once it stopped drawing blood, they took it out when doing more surgery – i can only use one arm for vein puncture – please keep doing what you are doing, my friend, i hope to meet some day – in person! there is Light – i was told i had six months to live in 1995 – breast cancer in 1989 – in 2009 when my femur broke i said so more medications – now I am training for Leadville 100 – That is 100 mile mtb race in Leadville CO at over 10,000 feet ! – you speak from the heart – you share your love – you have so much courage! you are a true inspiration! -you have won this battle! it is only going to get better – maybe some day we can go meet for a bike ride? 😉 all my prayers and tears and joy and love are being sent to you and your family -!!!
Thanks for the kind words. I had to approve your comment. You should see it now.
oh, i wondered how that works- you are doing just awesome ! !!!!!
So glad you are home and able to post! I was concerned about you–even though we never met, your thoughts and attitudes are uplifting. I totally get the love/hate feelings about leaving the hospital. Not having that level of care feels a little scary when you face going home. On the other hand, I remember hanging my head out the window because it was the first fresh air I’d had in a month. I also have a slew of meds though the schedule has been simplified to twice a day. Love the phrase “Flupocolypse.” I refuse to be fearful.
how about some photos? would love to see you without cancer
They’re coming. Check the changing self Page in about a week.
I actually like what you’ve acquired here, certainly like what you are stating and the way in which you say it.