I got my first infusion treatment today:
- Aloxi, to prevent nausea
- Dexamethasone, a steroid to prevent allergic reaction
- Avastin, to starve the tumor
- Irinotecan, a chemotherapy to cause apoptosis of cancer cells, inhibiting the tumor from growing.
It took about 4.5 hours, start to finish. Eight hours later, I feel good, even a little peppy possibly from the steroid.
That’s all for relevant medical information. The rest of this post is not of much interest unless you’re keeping tabs on my psychologial devolution.
Tina Saves the Day
This won’t be a surprise to those who know us, but once again, Tina takes the bull by the horns. She doesn’t accept an unacceptable answer. She fixes problems.
Last week they told us Carboplatin was not approved for me. Tina contacted our insurance company to find out why. Turns out it was an administrative shortcoming (as I see it). I could have been approved but the finance department didn’t do their due diligence to get it done. Our view on this was, “Ok, fine, we’ll see how treatment goes and maybe add Carbo later. Afterall Avastin and Irinotecan are the Big Two in which we were interested.”
But at our 9:15 appointment this morning the RN informed us that the Irinotecan was also not approved for today. Within 10 minutes Tina had confirmation from the insurance company that it too could be approved and she guided the doctor’s office on how to get the required approval on the spot. We were not leaving without the infusion. Problem solved.
The update gets a bit ridiculous beyond this point. All true, but silly.
I know I’m feeling some effects of the treatment because I drove down to get Tina a slice of Fellini’s pizza and really enjoyed listening to some pop song on the radio. This will be a clear sign to those close to me that something is wrong.
I have to wipe my ass with baby wipes in order to prevent this side effect. I’ll spare you the details.
Tina and I will have to be more careful around each other. A variety of my “bodily fluids” are considered hazardous waste for 48 hours after treatment. Condoms; separate loads of laundry; those sorts of inconveniences.
Ace up my sleeve
As a last resort, I’m going to ask my friend Lane Keener to cook a special meal for me. Lane has literally saved my life on two separate occasions with his cooking. Once in Greensport, AL. Again in Gatlinburg, TN. Sounds exaggerated, but I have witnesses.
My title, “Let’s not be hasty,” has a two-fold meaning.
On one hand, my local doctors don’t seem to be in a hurry to get me into the office to discuss my next steps. I have an appointment in two days, but I was hoping for sooner. After all, my tumor has gotten quite large and I haven’t been doing any treatment since Tuesday. Perhaps I’m over-estimating the urgency of the situation.
On the other, maybe I shouldn’t write-off NovoTTF just yet. I spent some time speaking with tech support today. Seems the device registered very many errors in the 33 days I was using it. I justified to myself that the error beeps the device chirped out throughout most days were normal due to heat and moisture and what not. The tech assured me that although errors were occurring, I was still getting treatment. I should have just replaced one of the parts as they forewarned me I might need to do.
Since I’ve not been prescribed any other treatment now and have a couple days wait before meeting with my oncologist, why not just put the headgear back on, replace the cable connector, use a replacement TTF device and continue the treatment? So that’s what I did today — and what do you know? — the device hasn’t indicated any errors at all. It’s encouraging but I wish I had done this 32 days ago. I’m concluding that maybe I spent the last 33 days undergoing less than optimal treatment. No point dwelling on what can’t be changed.
On this day
100 years ago today, Julia Child was born. Tina treated me to dinner at Babette’s Cafe where the menu was Julia-inspired. I suppose we were also commemorating the one year anniversary of my first craniotomy. This time last year, I suspect I was surrounded by family, completely lit on Dilaudid and Percocet, and annoyingly flirting with nurses. Tonight, I’m very happy.
Today was Tina’s last day of work, hence the title pseudo-retirement. She resigned from her job so we could spend some quality time together; travel a bit; see some family and friends. So to celebrate, I made a fantasía meal for dinner. Fantasía just means a meal thrown together with whatever you have on hand. I learned about fantasía from Tina’s aunt, Maija, one night in Dénia in the province of Alicante, Spain.
In case anyone was suspicious of my stories in the previous post, I submit to you the multi-course meal I served tonight.
- Beehive Cheese Company’s Squeaky Bee Smokey Jalapeno Cheese Curds and Wickle’s pickles
- Hard boiled egg with 2 year old homemade kimchi
- Farm fresh carrots braised in yuzu juice with orange marmalade roquette salad
- Shiitake mushrooms and local Imperial Sweets onions sautéed in coconut oil
- Roasted red snapper with home brewed kombucha sauce over flame-wilted bok choy
- Hanger steak tataki with nama shoyu and ponzu served with red quinoa salad
- Beef, strawberries, cilantro, habañero spring rolls
- Garden-fresh, sliced, Etowah county tomato and St. Agur butter cream blue cheese with Noble Tonic 03 maple matured sherry bourbon oak vinegar
- Toasted essene bread and butter
- Sautéed sprouted tofu with black garlic and nori komi furikake
- Three-flavors dessert — matcha nama chocolate (green tea white chocolate from Kyotofu Bakery in New York); High Road mango chili lime sorbet; pecan/date raw brownie (homemade)
It’s pretty well known by those who are close to me that I’m (shall we say) particular about food. Ask any of my former co-workers — they’ll corroborate these work stories.
While the others ate left-over spaghetti, to-go or frozen food at the lunch table, I was prepping fresh gremolata to sprinkle on the leftover lamb shanks or Oyakodon that I spent hours preparing the night before.
Whenever an impromptu group lunch outing was being planned, inevitably, someone (usually Nathan) would say, “Ask Ken where he wants to go — he’s the picky one.” It was understood that he meant, “…he’s the pretentious food nerd.” But it was really a playful label of endearment. I think because I didn’t have children to occupy my time (or talk about at lunch), I compensated with culinary adventures.
These stories are sensationalized a bit. Certainly I ate plenty of junk and fast food back then too. Nor was I the only one who ate well from time to time. I seriously doubt I was really pretentious about food (or music). That was just one of my fun personas in the office. We all exploited and enjoyed each other’s idiosyncrasies. Now that I am not employed, I look back with fond memories of an irreverent bunch of co-workers that became as familiar as… family.
Anyway, back on track with a story of my continued food snobbery.
I was disappointed that the free snacks provided at today’s brain tumor support group meeting were unhealthy, junk foods as usual. No one but me cared. I planned ahead though and brought my own fresh fruit on which to nibble.
Pictured on this post is my first attempt at making a healthy sweet treat — raw brownies. Pecans, dates, raw cacao powder and a touch of agave nectar — that’s it. No cooking involved. They’re yummy.
So instead of gastronomic flamboyance, my food-snobbery now is more about advocating healthier eating.
By popular request, here’s a link to the recipe from the Rawtarian website: http://www.therawtarian.com/raw-brownie-recipe/