Saturday, May 5, 2012

The good, the bad and the ugly.....

So here's MY reality with chemotherapy.....It DOES get HARDER with each least for me this is the case.
This is not always the case for everyone....but the thing about chemotherapy is while highly effective at killing cancer cells it can also damage rapidly dividing healthy cells through out the body. The potential toxic cumulative side effects are numerous....there's the whole risk for infection when counts drop, the risks of bleeding, the fatigue, the chemo brain, the potential risk for damage to other organs of the body.....and of course one of my all time favorites the risk of one of the chemo's I am on to cure my lymphoma can actually cause Leukemia.
Those are the facts.....and the cumulative effects of my treatment are beating my ass!!
Had a nice quiet/reflective birthday and b-day weekend. Got to get in a good hike on Sunday with some friends - needed to be out and distracted as it was "Pre-chemo Sunday".....I had spent the majority of the previous week moving a lot slower and needing a lot more rest....I think in my previous blog I tried to blame it on a "bug" I thought I picked up .....looking back I think it was just my body telling me to "get ready" ......the fight was really coming my way.
Sunday nite was the first time since all of this started I actually slept through the nite before chemo.....I am sure a lot of it had to do with the physical tiredness of hiking all day......but there was also a comfort to my sleep that nite....I would later find out why....THANK YOU KATE!!
So went in Monday morning for my "pre -chemo" work up , labs looked good....I must have looked tired/fatigued.....talked with the onco and he explained how it wasn't uncommon for me to be feeling this way at this point, especially on the chemo regimen I am on. He said he wouldn't be surprised if it actually got worse between now and round 6 and that I could probably expect the fatigue to linger for weeks following round #6........not the first time I asked myself why am I putting myself through this, why am I doing this to my body....and sure it wouldn't be the last.
Last 2 rounds had some troubles with nausea and then vomiting during the infusion of one of the chemo's ......of course the one everyone says "shouldn't make me nauseated or cause me to throw up" staying true to my history my body does exactly what "the experts" say it won't do.
We did add a strong anti-emetic pre-med to my treatment plan, this one seems to be the one most have had the best luck with. So I was for sure happy to get it....
Chemo started infusing around 10 am.....I was knocked out!! Luckily because of my previous history of puking during chemo I was able to talk them into a double dose of Benadryl.....and thought okie..."I'll just sleep through all of this, wont even know if I get nauseous.....
BIG FAIL!!!! Woke by noon and the puking came on and came on strong.....puked for a few hours, got it under control just like round 4 and thought " through that"......
Was I WRONG!!! By 8:00 pm was home and "Da Puke Monster" showed up at my house, no warning, no polite knocking......not even a "I'll huff and I'll puff and I'll blow your house down".....nope was full on puking......
As Monday led to Tuesday I was not able to keep anything solid in my system and was even having troubles with liquids....luckily I know what needs to be done to keep myself hydrated and when talked to the docs office agreed on a plan and agreed that if things got "worse" I would head to the hospital (yeah right like I am going to go sit in the F'ing ER for 6 hours waiting for IV fluids ....NOT~~")
Lucky for me I have been getting spoiled by Aileen and Gramma Great with the best possible way to fight of dehydration.....

THE BEST COCONUT WATER ON THE MARKET..... I am a big fan of my coconut water fresh right from the coconut....if you can't get that this in my opinion is the next best thing !!!
When keeping this down got really rough I wound up freezing it and just sucking on the ice cubes to stay hydrated.

Wednesday had to be back at the office for my Neulasta shot, of course they wanted to "hook me up" and give me myself out of it.....swore again I would watch my PO intake and make sure I was making pee every 2 hours....they like to hear shit like that.....c'mon pee every 2 hours SERIOUSLY?!?!?! ha ha ha!!
Was a good thing I declined the "hook-up" as Wednesday was soon going to be one most challenging days yet.......was a long day spent at the hospital with a friend.....

Thursday morning was shocked when woke feeling even worse.....managed to keep my tea down and my morning pills.....but was beyond exhausted..... again finding all sorts of excuses for being tired ......other than just owning up to the body is FUCKING TIRED......
"Da Puke Monster" was nice enough to move on by Thursday evening and fluids were going down and staying down ....woot woot !!
EXCEPT for the esophagitis that was caused by all of my vomiting.....basically the lining of my throat is torn up.... By this morning just swallowing my own spit was like swallowing razor blades...MANY MANY THANKS to my Great friend Gerelyn for coming through with the recipe to her " mucocitis cocktail" I was able to take semi-solids down today.
Still popping the anti-emetics around the clock.....just like ensure one more day of no puking before risking coming down off of them.
All this BEFORE my damn counts drop next week......I am sooo FUCKING OVER IT~~

Folks keep commenting  on "woo hoo" "congrats" your almost "finished"......almost finished with what???? The Chemo - yes I am almost finished with round #6 of my chemo.....then there is the few weeks of letting that round wreak its havoc/do its work ....then its the waiting game before the next Petscan to let us know how the cancer actually responded to the chemo.....just because round 6 goes in DOESN'T mean the cancer moves out......then after the Petscan and we can determine what cancer is left and where it is on to radiation treatments......and to be very honest at this point I am having serious second thoughts about putting my body through that.....will deal with that when we have the results of the Petscan and what the "recommendations" are....SORRY If I can't be getting more excited and celebratory with everyone about making it to round 6....
So that's where I am at "dodged" the admit to hospital for fluids "bullet"..adapting to yet more changes .....FRUSTRATED, TIRED, ANGRY, AFRAID.........THANKFUL to all of you for your continued caring love and support.
The "ChipIn" site came to its 3 month expiration.....bat shit crazy to realize it's been 3 months of this already.....THANK YOU THANK YOU THANK YOU so very much for your generosity....I will forever be blown away and so grateful to everyone who stepped up to help me when I needed it most!!
I am in the process of getting in touch with each of you to acknowledge and thank you personally, it;s just taking more time than I imagined, but I know your out there and I will get to you!!
It's difficult that "THANK YOU" is all I can give right now....know the words carry a ton of weight with me......what I can promise is that once all of this is behind me the generosity, the love , the caring, the enormous hearts and support WILL BE PAYED FORWARD you have all inspired in me ways to make this a better place for others more than you can imagine, and it will be my pleasure to get to work on it in honor of all of you and the lessons of life, love and karma you have blessed me with.

Moving forward....realize it's been over a week since I took my sunrise walk and no matter what, no matter how tired...tomorrow I WILL GET UP AND DO IT.
Disappointed that I won't make it to Maui for the OluKai Ho'olaule'a this year....
was looking forward to another round in the helicopter...
More so going to miss the laughs and antics with my OPTV 'Ohana and seeing friends....
Just things have gotten to where I need to be "responsible" and can't be going and tryin to do this stuff and just turn out to be "dead weight" ( no pun intended) and needing folks to worry or care for me............

I do  have the planning of the Fundraiser/Benefit to look forward to ...which is fast becoming a big job for everyone involved!!!...goal tomorrow is to make final cuts on the photography I will be putting into the silent auction....hard to pick.....and this will really be the first time my work is on "display" for  a group of this size.......Stoked to be getting calls everyday with more and more donors to the silent auction.
Will be a good time and will be good to see a lot of folks I haven't seen in a while. Well that's it folks, wind is outta my sail for now....just wanted to get you all a quickie update and hopefully answer some of your questions and concerns about this past week.


“Well I got to keep it going keep it going full steam/ Too sweet to be sour too nice to be mean/ On the tough guy style I'm not too keen/ To try to change the world I will plot and scheme.”

1 comment:

  1. Hang in there. Can't imagine how tough it is but we are all here to support you.