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Tuesday, October 29, 2019

10/29/19 Daily I do what feels like NOTHING...




It's been noted I haven't been online much I DO TRY to at least add some "LOVE" for/on every comment 💓 just to let you know its been received ...sometimes just THAT takes forever...It's never intentional not keeping you updated...just a lack of ...me.

I had chemo (6A) again yesterday (6b next Monday) .. it was originally scheduled to be the last 2 part infusion ( 6a-6b) chemo round...but my CA125 as of last reading: is 111....81 points over what I need to be back in remission (new test results within the week)....so we're going to add more double infusions to the end here 7A/B - 8A/B -9A/B? balanced with keeping my low blood counts etc., high enough to be able to do chemo ..long enough to bring me back down to remission.

Having been hospitalized with a cancer based blockage kicked me out of qualifying for all cancer trials ..so I don't have the chance anymore to try the latest/newest cures removing that extra minuscule % of finding a cure ...the blockage in general changes this dance I'm doing with cancer as a whole...changes the way we deal with it in the future...changes how it may return dramatically...changes timelines.

It's been almost 6 years...I try to see the "positives" in having had these years since diagnosis ...but it's not been or getting "easier" definitely been a test of my metal....tail end of my 4th round of chemo....shorter remissions each time and this round ...the 2nd I am back in remission I am going to go back on a different daily chemo (parp inhibitors) ...again, to try and get the most out of what time I can get. Chemo of some sort 24/7 to stay alive.

I've had a lot to think about in the last 30ish days since I've been "home"...but I haven't wanted to talk about my feels while personally trying to digest my mortality status quo ...at times so overwhelmed by it all I can't talk about it especially without the waterworks kicking in... to the point its even notably weakened the automatic reaction we all seem to have to answer the phone just because it rang.. (to be honest I see this ignoring the knee jerk response as an improvement)..

Now I pause and ask myself
1st...do I want to talk ..to ANYONE
2nd is it someone I NEED to talk to VS someone who will be understanding and wait until I WANT to talk.
3rd answer or let it go to voicemail as NEEDed

I'm an artist in all things...all ways ...I take a 360° view of the "subject at hand" ...and lap it as needed to find that place I can best "see/understand"...the RAW REALITY....I almost died, ...I spent 2 months recovering in the hospital being fed through tubes...and the fight is still on...it hit (is still hitting) me hard ..absorbing everything I have just gone/am still through...still have a tube hanging out of my gut "just in case they needed it again" (yesterday got approval/strong enough now to get it removed.)

I'm also coping with while I was in the hospital fighting for my life, more friends ..close to acquaintances lost their lives...multiple people with different mutations of cancer... lost their battles ...I stopped having what they call "survivor guilt" awhile ago...instead manifested into a "so am I next then?" panic...a waiting for the other shoe to drop...a anxiety/phobia I'm constantly fighting...battling to feel alive in the NOW

Add...I, like everyone else, have family/life issues outside of cancer...some days some situations ...cancer just feels like the moldy rotten cherry on top of the life ish Sunday I got served....not that every day is ish ... but it is hard to see the good days right now.

I haven't reached out to anyone to physically help ...because here at the almost end of my 4th round of chemo ...while others may want to its well learned there really isn't much you can help with right now..sometimes the "help" isn't helpful but more anxiety causing... thin line between allowing others to help because it helps them...and warrior "I can do it myself" me allowing them to help because it helps me. I'm an introvert...closing in was/has been/and is needed, self healing...its how I deal with ish. Up and down the ladder of family and friends ...hope y'all can understand the need for "just me" time to reflect my life and current status....truly a "really it is ME not YOU" kinda situation.

...Daily I do what feels like NOTHING almost literally but is EVERYTHING in reality ...centrally focused on getting to - through and over hard chemo ...I have a dishwasher now ...helps...and I count doing that, my laundry/vacuuming etc as my gym time/"cardio" that gets done when it gets done.... with a compromised immune system ...germs are germs..cant go too many places ...see too many people..or do too many things....that and to be totally honest most days energy is seriously limited... I lack the desire/ability to expend more then needed to deal with this f'ery of a disease.

...got a list of to do/catch up/return peoples calls/emails/messages.. visits eventually etc ...things I want to do ..but don't currently have energy for..and when your lacking in all things that make you feel alive and human ..(heavy sigh dry up the waterworks)... I'm doing what I can with what I have to give....one day at a time....time ....all circles back to time.

That's what I got to give for the moment ...chemo has me feeling garbageish ..took some anti barfing meds while on the phone with BFly earlier that have kicked in ..probably should eat while I can then gonna & veg out on some documentaries.

(...been bingeing on ones about catching serial killers and the sort... just hit me typing it ...I think maybe in a "get over your self pity party" way because its darker then what I'm dealing "suffering" with vs. their victims...I know I tend to gravitate to the ones where people have battled physical/mental etc challenges their whole life ... fior the same kind of reason hummm gonna have to marinate on that for a minute..something else to think about.)

so much LOVE to all