You. Aways. Have. The. Choice.
You. Aways. Have. The. Choice.
That's how my sis's email started and she's right. There are so many things we feel we don't have a choice about, but my health and my personal advocacy ain't it. So, I'm making what feels like a really big choice now and this blog is mostly for me. I know she and Mom might make a different choice, but I'm more scared of saying no. I have to try.
I VOTE YES.
A lot led to this, so the back-story is really the biggest story for me, but I thought it would end with surgery, so I didn't blog... I was too busy taking PLK (Pam's lil' kidney thanks to Ethel) on her bon voyage tour! PLK got to have some last big adventures and I hope she felt loved and appreciated. She sacrificed herself to protect my entire body and I will be forever grateful! Hiking ~ Diving ~ Biking.
A Quick Intro.
I have kidney cancer and have had it, unknowingly, for years, but as an endurance athlete who also stays overly stressed at work, it was easy to explain blood in my urine off & on. 600k in 100+ degrees, 1200k, no sleep for a month during Stock Show. I constantly push my body to the limit, but it always went away... so I thought the instigator was gone too and I blamed stress. Not. (more later about THAT journey!)
Sept 21 had my "robotic-assisted, laparoscopic nephroureterectomy with bladder cuff excision." I was high as a kite before, during and after surgery!
2 Weeks Post-op.
PA Blake and I joked about when I could start ab work and riding (both have to wait another month) and then the curve ball. All 4 biopsies recommend chemo.
90% of kidney cancer is "cured" with surgery and I had the best surgeon in the area for my procedure. So I stayed high as a kite and grateful as I got stronger!! Not fast or strong of course, but determined. Sobering to hear "chemo" and of course my first thoughts are of the movie-set chemo and side effects, which are very real by the way.
First available appt is 4 wks away. Nov 2, 2020. Same day I'm allowed to ride my bike outside & do ab work.
Meeting the Oncologist, Nov 2.
Starting yesterday, I cheated a day early and started doing a little upper body work on my Total Gym and some crunches. Time for yet another new routine... and then my newest routine got handed to me Monday afternoon at TX Oncology.
Had a great repoire with Doc D and he instantly made me smile because his nurse (scattered Susan) didn't even shut the door before showing me his Calf Scramble plaque. Said he was sooo excited to meet me (since I work at Stock Show) and moved it into my exam room to share :-) Dean was thorough, attentive and patient and reminded me this is always a choice... and I've decided I'm more scared to say no, than to say yes. Lots to process.
My Cancers. 4 biopsies, 2 different results and all 4 recommend chemo. If 1 of 4 recommended it (especially the stage 4 tumor) then I might've had some merit to reconsidering. But all 4 and for 2 different reasons.
- The big one - PLK had a stage 4 tumor that had almost doubled it in size and was also high-grade, but non-invasive. The stage 4 and the high-grade both recommend chemo.
- The other 3 - high-grade and invasive. Though the margins showed clear, these can metastasize elsewhere, so that combination = 3 more chemo recommendations.
My Friends.
My friend Pam started with kidney cancer 2years ago and it is not operable. It is a different type than mine and is metastasizing in other areas and she undergoes constant chemo. I've known her for over 30 yrs and this journey she's on scares and inspires me, even more than she already inspired me, as I learn more and more. Pam votes yes.
My buddy Gayle & her doctors thought her nasal cavity cancer (with a big, long-ass name) was a nasty sinus infection for almost 6 wks this spring until the tumor was growing over her eyeball and she became blind in one eye for weeks (she's getting some sight back as the tumor shrinks). Gayle's a badass I've also known for about 30years who went through daily chemo for weeks, then a little less frequently, but since May, she's still in regular chemo. She was considered essential during shut-down and did it all. Worked non-stop during chemo... still does. Cared for family that can't care for themselves. Gayle's a badass and Gayle votes yes.
My pals of almost 30 years, Lyn and Beverly created Careity Cancer foundation to provide nothing but philanthropic efforts to support cancer patients. "Careity exists to provide direct care that saves lives, gives hope, eases pain, and allows cancer patients and families to focus on healing." Every day, they see the worst in cancer and the worst in people and I love them for their passion, generosity and grace. Lynn & Bev vote yes.
My friend Sandy fought and beat breast cancer 10years ago. She's a powerhouse human being and athlete before, during (continued training for a half-ironman during chemo) and after chemo. I'm lucky to know and love such a generous, kind and joyful spirit. Sandy votes yes.
My friend and latest hero, Jacquie Schitter, was diagnosed with colo-rectal cancer in May. After a lifetime of perfect eating, perfect fitness, extraordinary athletic prowess, practicing and teaching nursing (and dammit, she's smart, nice, educated, encouraging, freakishly powerful, gorgeous and funny with a blazing hot smile too...it's impossible to hate or envy her!!), she won't win. It has metastasized over her entire body and she entered hospice a few days ago. Jacquie voted yes for herself and would vote yes, so I vote with her, because of her, in her honor, and I hope to make her proud as I try to fight with even a part of her grace and tenacity.
My list is endless with extraordinary human beings that voted yes to chemo and to fight for themselves and who vote yes for me. I VOTE YES.
The Chemo.
Of the 2 drugs, Cisplatin, is my only fear. It's #1 side effect is neprhotoxicity... it will try to kill my healthy kidney and I only have the one. It's the same drug used for numerous cancers, like lung cancer, breast cancer, etc, so it's not selected for that reason, but is an overall cancer-killer. This terrifies me because it means I've lied to my healthy kidney and this is the only thing that makes me want to cry and be scared. I promised we were in it together and I would take care of her. We're still in it together, but now she has to fight for herself. Kidney function will be monitored constantly and my dosing adjusted accordingly, but it is terrifying. Goal is to get ahead of metastasizing elsewhere, so all-over poison is the way we're going.
Other side effects? I naively plan to just convince myself I'll gut through it, like a 1200k or weeks of Stock Show with no sleep!! Fortunately, in my case anyway, there isn't a Stock Show this year and though I've cried WAY more over Stock Show than myself, Brad is being a true prince about "do what you need to do." So if I only work 2-3 days a week, I think I'll feel really good about it. I have to be ok with feeling like crap... so I am.
For me, facts are easiest with bullet points (and this is for me too), so here goes:
- Chemo: Gencitabine and Cisplatin for 4 cycles, 2 weeks on, 1 week off (3x/wk). Doc Dean said 28 days could be customized for me if it helps me ride, but do I want to add another month to the overall? Time will tell, but options are always good.
A. I expect to drive myself to/from each session.
B. Each cycle expected to be harder because my body thinks “oh shit, we’re doing this again."
C. Each dose calibrated for kidney function, BMI, blood counts, lots of numbers.
D. I'll also get liter of fluids before & after each treatment.
E. I'll get blood work each visit (ugh, separate poke, apparently takes more time to draw blood from the port, requires an RN, etc. This doesn't sit well with me at all)... so minimum 16 MORE pokes, grrrrrr! Check for CBC, electrolytes, blood sugar, liver & kidney function, etc. I can request a copy of these each time I come.
F. Call if I don't feel good.
G. Can make additional trips if I want help with IV fluids, nausea, etc.
H. Keep protein up.
I. Doc D doesn't expect me to lose my hair. Says thinning might be all. Gayle says he's full of shit and expect to lose it. Dan says he's ready and planning to shave his head with me :)
J. I'll get a whole stable of meds and drugs in advance for nausea, etc.
K. Chemo options - Doc D shared 3 options. Talked through all 3. He recommends this one and I'm on board.
L. Gencitabine Side Effects - aches, chills, nausea, vomiting, skin rash, bloating, burning/itching. List continues and looks pretty harsh. Next one is worse :(
M. Cisplatin Side Effects – Nephrotoxicity (toxic to kidneys, so labs are critical), ringing in ears (but not usually vertigo, which I specifically asked!), potential hearing loss, metallic tasting food & drinks, nausea, vomiting, numbing of “stocking & glove” area so hands, feet and upwards, decreases potassium, magnesium & creatinine (more kidney toxic) and dehydration so hydrating is critical.
N. Cisplatin is some nasty shit.
- Cycle 1: 1A=Day1 G+C. This combo day is the biggest “wollap” (worst days estimated ~ D3>D6) The "A" days are the longest, est 8hr in the chair, others maybe just 3 hr and include lots of IV for hydration and electrolytes. 1B=Day8 G only
- Cycle 2: 2A=Day21 G+C 2B=Day28 G only
- Cycle 3: 3A=Day42 G+C 3B=Day49 G only
- Cycle 4: 4A=Day63 G+C 4B=Day70 G only
- All cycles have 2 more hydration balancing visits, so 3 visits/wk.
2. Port – Installed in-hospital – removed after the 4 cycles – yes, 2 more scars, this time above and below collarbone for the infusion to go directly into the jugular and then into the right atrium of my heart (scary words).
3. Exercise = Yes!
A. Said my exercising is now one of his priorities for my mental &physical health. Wishes all patients knew the power of healing with exercise.
B. He’s good with 200k’s – good with scheduling around my rides a little if I need something special.
C. Lots of hydration.
D. Specifically asked about caffeine/sugar/cokes – he said do what you need to do and what your body will tolerate.
E. Will prescribe Zolfran for potential nausea to take on the bike.
F. May prescribe antibiotic due to decreased immune system.
G. I'm prepared for not doing much, but my goal is to keep working out.
H. LOL, can't get Blogger to cooperate on bulleted lists, so I stopped trying :)
Next Steps.
Said yes November 4. So, now I wait. My buddy Gayle, uses Texas Oncology and RAVES about their responsiveness. Ummm, so far, that is NOT my experience. I tried the waiting game for 1.5 days, so am learning I can't be patient. Time to pester the shit outta them. I call it turning into a brat, buddy Deeanne calls it "growing horns and tail." I love hers way better!!!! Currently waiting on:
- Scheduling full body PET scan (to check for post-surgery metastasizing - waiting on insurance approval)
- Scheduling port installation (hospital to call me after they receive order)
- Scheduling for chemo start (Farrin to call me after order processes)
- Insurance counselor to compare my costs when FWSSR insurance changes Dec 1. I have the option to pay $300/mo to retain our PPO, but need to also see reality with HMO.
- Genetic Testing Counseling - Everybody is just beside themselves as to why I got this since I'm the opposite of the normal patient. They're trying to find some kind of "why."
My Plan.
I've requested Mon Nov 16 for my start date, but there's an awful lot to happen next week for that to be real.
Ramping up my nightly exercise now that I can finally do some stuff. Weather is stunning so I'm enjoying my walks running into the night. Makes me happy! Going to try to ride outside this coming weekend. And I'm planning my chemo bag :-). Bought fun, joyful blankies to go with me. Mark's "Fuck Cancer" socks will go. Planning hilarious earrings and probably my leopard tennis shoes. If nothing else, I will laugh while I get dressed! Also planning my snacks and Sandy said she planned her Wendy's hamburger every time on the way home. I'm good with ritualistic treats, so I just may pick a Wendy's burger too... LOL, it worked for Sandy!
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