11/26/2019 I'm a bit of a mess trying real hard not to be.

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

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

9/21/19 Those who have a "why" to live...

#warriorMOde #TheGrands #ART 

#OvarianCancerWARRIOR #MOreWorkToDo

9/21/19 Someone is very happy I am finally home....

9/16/19 Plan right now is...

Plan right now is for me to go home this Friday 

...for those who are voicing concerns...I'm ready 

....careful plans are being coordinated to transition home smoothly. 

Thank you all ...for all the LOVE you send me daily. 

Fights not over just relocating back to home base 

....Looking very forward to being surrounded by 

my healing paints canvas and brushes again.....all my LOVE

9/15/19 Had chemo last night feel like garbage...

Had chemo last night feel like garbage trying to focus on getting closer to remission....Their talking about sending me home soon and doing the rest of chemo as an out patient...scares me some...but it would be great to sleep in my own bed and have my Munkee with me all the time....more news when there is news. LOVE

9/8/19 Short update

Short update...Just finishing 4th chemo infusion my CA125 was at 900 it's now down to 366. Seems the blockage is opening up and my bowels starting to respond. Things keep on this path I'll be able to go home soon and finish the rest of the chemo as an out patient. LOVE

9/1/19 I had hoped this time it wouldn't fall out...

I had hoped this time it wouldn't fall out but after 3 chemo infusions and radiation my hair started falling out....buzzed it down yesterday .... my I get to decide middle finger response to the cancer ......ct scan tomorrow chemo infusion #4 soon....there has been some really positive progress with the blockage. Update more soon as there is more to update. LOVE