How has it been a year?!?

I've been reading Facebook Memories and....whaaaaat.

On this day last year, I was preparing to be admitted to the hospital the next day to start my first round of chemo.

I was thinking my life would be in upheaval for a few *months*. And here I am a year later---life's still not back to normal! It BLOWS my mind that it's been THAT long and I still haven't returned to normal life yet; I guess I hadn't been factoring in the transplant at the time.

Of COURSE it's fantastic I've come this far, etc etc gratitude disclaimer, but wtf--it's been a whole year of this eh?

Ah, I really miss people & downtown wandering.

Ohh, I'm really boggled by this passage of time.

Unfathomable.

Inconceivable.

Does not compute!!

Keep your eye on the prize

I saw my doctor on Friday and he's less concerned about acute GVHD now that I'm almost at the 5-month mark since I got my transplant. 5 months already! When it's January 7th it'll be 5 months, meaning February 7th is 6 months since my transplant, and if all continues to go well, I might be able to go back to eating and going out like a normal person.

I'm so glad and grateful to have made it through the highest risk period for acute GVHD, but needless to say, this doesn't mean I'm out of the woods. Your body can reject the transplant at any point up to a year after you get it. But at the same time, of course it's still good news that I've made it to this point, and it feels wonderful to be here--and that sure is a freakin' understatement!

Other things I still have to worry about include colds, flus, and infections, all of which can be very dangerous to me still. Another thing I fear at the back of my mind is another relapse. It's not like much can be done for me if I relapse again. It would be extremely, extremely bad news indeed. So I try my best not to think about that.

So far, so good--and that's all we need to know, right?

(Ha, imagine it were that easy to keep your mind on the prize?)

That being said, I AM very excited for February. The 6-month point. I wonder if I'll be able to eat what I want then. I wonder if I'll be able to go to restaurants. I wonder if I'll be able to have sushi. I wonder if I'll be able to have alcohol.

It'll be around my birthday, so what perfect timing that would all be, huh?

Arrrghhhhh

If one more person tells me to "try to distract myself from my anxiety with hobbies" I will lose it. I'm so tired of explaining that when you're anxious, creative things are the most difficult things to do. Tonight I decided fuck it, let's get back into my hobbies, and tried playing Breath of the Wild. Forget it. I got stuck at what should be a relatively easy puzzle. The more I tried the more frustrated I got, so I stopped before I got too angry. So I go play piano instead. I can't figure out any new music. That makes sense, because how could I do that with this level of anxiety? No problem. So I try to play a medley of stuff I've always known and have a really, really hard time trying to remember The Land Before Time soundtrack, which makes no sense because I've been playing it on the piano since I was a little girl. I played a few other things and saved my favourite for last--Beethoven's 7th Allegreto--and I can't remember it. All I remember are a few broken parts. I've been playing this *non-stop* since I was in the 10th grade, where did it go? Playing it (and the Land Before Time soundtrack) gives me such a sense of peace. And now I can't even do that?

Not being able to figure out new music is one thing, but not being able to play old favourites is just torture. Not to mention, why is my long-term memory suddenly affected? I'm used to my short-term memory being rubbish these days, but my long-term memory shouldn't be affected like this.

So now I feel positively awful; 10,000x worse than if I had just watched TV all night like I had been doing. So I guess I'm back to being stuck watching TV shows and movies all day. It's just getting so repetitive. I'm tired of being so anxious all the time. It's so exhausting.

Needing some alone time

After having a constant revolving door of (super incredibly lovely) people constantly here, I had a day to myself yesterday. I can't find the words to explain how tired I got from having no alone time for so long. It's tough. Even if the people are awesome, it's draining, both physically and emotionally. I did my best and tried to balance out the constant company by making to sure to always give each other space, watch shows together and be on my phone a lot...but truth be told, that's pretty much all I had energy for anyway! Oh, I'm so very grateful for everyone who came and stayed with me, whether it was for a week (or more!), or just a few hours. So very, very grateful for all my amazing, terrific caregivers indeed, and that is an understatement. But I'm also grateful for alone time. It's just something the body and mind need, right?

I get tired so quickly still. Again, I feel it so hard so both physically and emotionally, but yesterday with all my alone time, I felt intensely physically exhausted in particular. I fried eggs (you know, something a 10-year-old could do), washed the dishes, and wrote one single Christmas card. I also organized some stuff in my purse for an appointment I had today. Well, wouldn't you know it felt like I had run a marathon. I mean, I guess I gotta count all the hand washings in between all those things. Like a hundred times a day. I'm so tired of washing my hands. Oh, and the taking of so many pills. And applying so many creams. Etc, etc. I know it doesn't sound like much, but when you add it all up, all these many, many little things, on top of everything else, when you're already so exhausted...it's a lot. It really gets to you after awhile.

Today I had my OBGYN appointment. She's a specialist for folks who've had bone marrow transplants, so I feel really safe with her. Anyway, so far so good on that front, so that was a very nice reassurance. Tonight I'll have the apartment to myself again so we'll see how that goes. I'm hoping to have enough energy to do some gaming. Breath of the Wild (one of the best things to happen to me in a long time--that's right, I typed one of the best THINGS to happen to me in awhile, not even "one of the best games") is pretty high on my list of ways I hope to spend my time tonight.

Getting there

I've been off immune-suppressants for 13 days now! So far the only signs of GVHD I have is GVHD of the skin; got a pretty huge rash on my face a few weeks ago that looked like I had a chicken pox! My doctor gave me the first line of intervention, which is steroid cream, and that seems to keep it under control. As gross as it looks, I don't mind GVHD of the skin as long as that's where it stays. Just don't go after my organs, and all will be well, alright?

Speaking of which, I need to be super vigilant every day about any little change that may occur in my body. What would just be a normal stomachache for most people could be something very dangerous for me, so I constantly have to be on alert. As such, I'm also constantly in a state of anxiety. It's pretty exhausting (to put it mildly) and I wish I could handle it better. I'm just trying to get used to it but I'm really tired all of the time. I'm seeing a therapist but he isn't very useful, unfortunately.
At least most of my blood tests have been giving good results, so there's that. Lots of ups and downs, to be sure, but mostly things have been good. In fact, my doctor even said that if my next appointment (that's tomorrow!) goes well and if all seems stable,  he might even change my appointments to every two weeks instead of the once-a-week schedule we have going now.

Also! I had my first vaccine last week. So we're already starting with that. Pretty exciting, huh? My first one protects against pneumonia and a bunch of other things I've already forgotten. I still need two follow-up vaccines for this one. In all, it's going to take 2 years to get through all my vaccines. In the meantime, I just gotta really hope that I don't run into any non-vaccinated folks. That would be pretty scary.

The Stage Management of Caring for Another

My doctor has started tapering me off the immune-suppressants as of a few days ago. No changes yet, although I've had some unrelated issues this week that required me to call the nurse-admin/doctor-on-call. Thankfully I've not had to go in to the hospital, and was told to just continue monitoring my symptoms. These types of responses to my call-ins are of a particular relief to me this week, as I have a very dear friend staying with me from out of town right now. As my husband began his latest contract this week, we now have friends staying over to act as caregiver. There needs to be someone here at all times for the next little while just in case something should go wrong or I suddenly need to go to the hospital. Up until now, Mike's been home, but now that he's going back to work, we need other people here instead. Being the amazingly organized stage manager that he is, Mike stage managed the entirety of my caregiving up until early December. By that point, he'll be done his contract for the holidays, and barring any complications, I should be able to take care of myself. He really did stage manage the entire thing though. Keeping track of everybody's schedules, Excel sheets, everything.  This man is something else! He's the best.

Zig-Zags

Everything about recovery is a zig-zag. You don't slowly get better in a straight line evenly, slowly but surely, going up. No, it's all a zig-zag. Things are amazing one day and then not so great the next. A lot can change in 24 hours. Sometimes it feels like I've taken 2 steps forward, then 5 steps back. But I beat cancer twice and got a stem cell transplant and I'm alive so I'll just marvel at that.

My appointment with my BMT doctors went really well this Tuesday; all those virus numbers went down, so hopefully they'll stay dormant. The biggest news was my doctor telling me that in two weeks' time, my hickman line will be removed! (Barring any complications, of course--as it always goes.) I am very excited about this.
He also talked about beginning to slowly taper me off the immune-suppressants. It's a long, tricky, and dangerous process, but also a very important one. Like everything else, it's not a linear process. Lots of trial & error and going back & forth on the dosages. Once I'm off immune-suppressants, my body can start to fight for itself, meaning GREAT things (my immune system will be working once again and life with a properly functioning immune system sounds like such a dream right now!), but it also means scary things, like the fact I'll be at greater risk for GVHD, as if I weren't at high enough risk already. Hopefully my immune system won't wake up and be like "WHO THE FUCK ARE YOU" at my news cells, and we can all get along and live in harmony for many decades to come.

In other medical news, today I saw my cardiologist. Unfortunately my heart has not healed itself from all the damage it took from the chemo back in the spring, so I have to go on some more medication. (Because being on 13 meds right now is just not enough!) Hopefully the side effects won't be too bad. More importantly, hopefully it will treat my heart the way it's supposed to. Kinda scary. I'll try not to dwell on this point because I don't want to and there's not much I can do about it.

Between the heart issues and the fact that my OBGYN figured out I'm in menopause--ohh, did I write about this yet? It doesn't matter than I'm only 38; the transplant and/or the meds I was on for it, or maybe a combo thereof (I can't fucking keep track anymore) apparently sent my still-not-yet-40-year-old body into menopause. So that's really great. So more meds for that. Ohhh boy.
But yeah, between the heart issues, menopause, and the ever-present fears of GVHD and the viruses, it's exhausting. There's not a day that goes by in which I don't feel so incredibly happy and grateful to be chilling at home, eating my husband's delicious cooking and playing video games in our cozy apartment, but I'm not always successful at immersing myself in things deeply enough to distract me from anxiety and sometimes sadness. 

All that said though, the past 4 days in a row I've woken up with energy! It's great! Physically I've had a huge boost suddenly, and I'm really loving it. As No Doubt sang once: "please don't let it go away, this feeling has got to stay!" I like feeling energetic!