I'm a bit of a mess trying real hard not to be. New ground...end of the 4th round of chemo we did not make it to remission ...so we extended my 4th round of chemo by another 1/2 round ... (or 6 more infusions) ... I did the 1st (7A) last Tuesday... I do (7B) today ... I get a week off and then 8A... 8B week off...9A, 9B etc into the next year...unfortunately not only am I not in remission ... my CA 125 numbers are going back up.. currently 187.6.
They tell me not to stress on or live by these numbers as my status...but its one of the few "markers" of how I am doing I understand ....under 30 means in remission "safe". I'm not "safe". Trying to remind myself its still under 200 .. it was near the 1000's when I was in the hospital, still it's a very scary place to be in ...more uncertainty of what the future ..immediate and longer term looks like. I'm not ready to die.
I finally got the feeding tube out of my gut made a HUGE difference to the physical discomfort/sleeping trouble...I still wake up at 4AM a lot ...finally quit trying to go back to sleep ..if I'm up I'm up and if I'm not ..probably will be soon. I don't get the best sleep...toss and turn constantly. Now that the tube is out I have a double belly button ...or it looks like it.... on the left now looks like an innie where the feeding tube was ..with a smear of what used to be my real belly button down the center...so many scars...aches pain
..the tiny bit of ego I hold on to ... don't have enough hair to even bother with "doing it" haven't put on makeup or even worn my contacts easily in a year and I basically live in PJs now...cancer is cruel ...NOTHING about it is cute and its taken its physical toll on me ...I don't know what a day without pain is anymore and it shows ...its my "normal"...makes expressing ...feeling joy difficult.... I try and remind myself its the moment.. its chemo ..it will get better after.
...After if we can just get to ...after.
I've been having terrible dreams,...sometimes now awake ..brain wanderings tormenting me that I might have to accept time finally coming for me...its been 6 years since I was diagnosed...feels like last year....some days it feels like the fight has been the whole 50. It's true I've been very lucky to have these 6 + years. My heart again to those who have passed... I fear joining you soon.
I worry too much (could end that with a period as a statement by itself... I worry too much.) ...that I have wasted the time... that I should have done more seen more ...been MOre... thats always whats driven me and been self abuse at the same time...never enough...MOre ..works great when its about making more art...destructive when I'm self abusive... thanks to the pain & neuropathy haven't been able to be very creative ..so I'm artistically depressed too.
Reality is ...I am not in control and as a control freak....really freaks me out. I need to get back to seeing my shrink again I think...I'm just spread so thin/tired right now ...but if not now when...and we circle around to worrying that there wont be a "now" later.... said it in my last post ..TIME....it's all about time.
I've started thinking about "bucket list" kind of things again a lot more...have I done what I was supposed to while I was here?...Been the kind of person I was meant to be? Although I have a few ...I dont have the go see the grand canyon kind of list... but as I worry about time getting shorter I realize I need to make more room/time/space for loved ones ..not just for me but for them...you...tricky to do with a compromised immune system. I don't know what that looks like or how that time is shared ... I am just aware I need to make more space for those of you who want/need to share it.
Thank you all who have hung in there with me these 6 years....and are here with me to the last ... I love you more that I can express. LOVE
No comments:
Post a Comment