A nice day for the two of us I'd like to think. Started off the day by giving Wash his empty bottle- 500 pills, 500 days alive since he returned home to me from the hospital. He was overwhelmed by this for a bit, still is I think. I'm not even sure I understand- I don't think anyone who hasn't faced a terminal brain tumor can know. I've tried to let him rest/relax as he could today, rather than trying to push some party on him right now. He does want to have some kind of celebration, some notable mark of his defying cancer and statistics and still being alive and conscious. I want him to have a party of some kind, I agree, it's something for him to mark and be proud of. He might not get a 30th birthday, but he can have a 500 day alive party.
I have insights to write on this, but that's a horse of a different colour. Perhaps it might be best to just re-read the first 100 days of my blog, a taste of comparison. Wash wants to do another stand up routine- I've posted the old one on my links, he is working with my help to write some new material - both adult content and some G-rated stuff.
So much has changed over 500 days, some things eerily and sadly the same. It is hard to conceptualize let alone communicate the way that facing death at 26 works. Days are I wonder how he can be so - solid. Not brave, I don't like that word. But solid, in that he knows of his eventual fate and he is coming to accept that. Accepting and trying to move past the knowledge so he can live and enjoy his every day. He grows even more attractive to me as person daily. I do admire him. I wish others saw it as I do.
Tomorrow I hit my halfway mark of the steroid course. I've already packed on 8 lbs of water etc. Sudden body changes make me quite uncomfortable Aspie wise as well as physical so it is hard for me to face more, knowing that right now my asthma won't even let me exercise to help get rid of my weight.
In 18 months of hard work- diet modification and daily exercise I lost literally 100 lbs. Since Wash has been since in this 500 days my own health has not improved; I've faced more and more asthma/breathing issues and even had an emergency gallbladder removal surgery last year. I might be facing another surgery in a month, I am working hard to not. I've also gained about 50 lbs back- I'm heavier than I have been since around 2007/2008. My knee has recovered but I just have not had the time or energy or mental will to get back into better shape. I want that to change.
The next few days will be more of me being a bit short and cranky. I need to figure out how to work out working out into my life again. Times and circumstances change so much.
My doctor also decided that the time has come for me to be on/have a home nebulizer which depresses me about the declination of my asthma, but does make me feel a bit happier that I won't have to go to the ER or Dr every month if I have another flare soon- which I guess is exactly what they think might happen.
We also worked on the tanks a bit- and I mean mostly me. A good cleaning to help the grunge and a filter change, and we added in some shells for the fishes to play in/with and a couple new Otos to help clean in the big tank. Wash still wants some blue danios so in a week or so I might call around to check. It does seem to help mentally having the fish, they do just get one into a calm state, quite memorizing.
Wash is doing dishes and cleaning cat boxes this week to help, and I'm probably going to be doing some laundry tonight. Even for the celebration of just being alive, one still has to live- and sadly, we're brokeass so we get to enjoy the chore parts as well as the "fun" stuff one sets out to do when they are dying. Like watching every- yes, every- episode of 'Star Trek' - maybe every series. We're on TNG now. I do admit to enjoying re-watching all the fun of the first season, and Wash is always indulgent of my own t.v. tastes, so I will do my best to not be snarky and enjoy it.
Speaking of brokeass- so I get a letter this past weekend informing me that due to "extreme budget issues" Social Sec/ MediCare will not be paid to us in July. (After my letter in June confirmed we would) However, they would still deduct Wash's new monthly payment from us, so he can keep his insurance going. *facepalm*
So the *only* source of money we have (aside from any donations by you all, or the emergency funds our parents drained to fix the car) is not coming this month.
FRAK.
Of course, this is the month I had like, 5-8 extra doctor visits, Wash had new docs/co-pays, and I got an ambi ride to the hospital. The month that having that money for 'medical need' is great.
Sigh.
Things will work out?
Right now I'm mostly scared of the unknown again- so few with GBM make it 500 days, let alone more...
I guess Wash can watch his TNG upstairs and I'll put in some Buffy TVS on the other tv- I have to ask,
Where do we go, from here?
Posts
"500 Days with GBM Brain Cancer."
ReplyDeleteIt's hard to wrap my mind around that "500 Days" number, (i.e., given GBM's usual course), but ............ does that stop me FROM WANTING that to *eventually say* for Wash, "Medically Inexplicable: 50 Years with GBM Brain Cancer!!" (with the standard colloquial version bein', "Miraculous: 50 Years with GBM Brain Cancer!!)??
'Nope, i.e., it doesn't stop me, at all!! My Hope-Wish-Prayer is for Wash to also recover well enough TO study/work/be active, (i.e., as close as possible to "before," also hoping that your health improves, too, of course, Tashi).
Is there a point when Wash would be considered in remission? I know different cancers have different points of "if it hasn't come back by now, it is much less likely that it ever will." Does that exist for GBM, or is it just assumed that it will get you sooner or later, no matter how long without a recurrence?
ReplyDeleteAlso, "500 Days with GBM Brain Cancer" sounds like a movie title. Or an indie rock album.