January 24, 2007 § 12 Comments
Halfway around the chemo racetrack I crashed and burned. A NASCAR wipeout without the roaring fans. So much for being brazen about tolerating rounds one through three. My fourth treatment was a slap in the face. I stayed in bed, under the covers, and in a cold sweat for close to four days. I was hideously achy to the touch and fearful that my DNA had mutated beyond repair.
As I faded in and out of a half-dozen movies, 3pm was no different from 3am. I imagined my health irreparably damaged. Wrestling with a decimated life, Sunday arrived on schedule. I was sure I had pushed my luck too far, and that this last pass of poison would undo me. I was wrong. A sweat-induced coma was averted and the ER would remain a TV program not my destination. My body repaired itself, again.
I thanked a vague god, and remain in awe of our relentless and resilient physical bodies.
Like my very best friends, my appetite came calling. At four in the afternoon, during act two of Cinderella as performed flawlessly by the State Ballet Theatre of Russia. While lithe ballerinas and their sculpted male counterparts soared across the stage in cotton candy costumes, I imagined seared tenderloin with cracked black pepper. I settled for some m&m’s. Post show we made a b-line to Whole Foods where I snatched ticket 68 and took my place in line at the meat counter behind still hopeful and rib hungry play-off fans.
One of these and one of those and an extra slab of that please.
My inner carnivore was on the loose. The goods from the butcher were all well and good, but I needed instant gratification. I sought sanctuary in prepared foods. Frannie ordered her usual, teriyaki wings. For the first time ever, roast beef called to me.
It wasn’t pretty, but this isn’t a fashion site so I will tell you just what we did in the grocery store parking lot a half-mile from home. We ate dinner, in the car, with plastic utensils, heater on, and a view of two choice handicapped parking spots.
That roast beef was a cure. Devouring iron infused juices I settled into the car, I took another bite of beef. Frannie offered up chicken wings. They did nothing for me. I had eyes only for the meat, a chewy dose of iron and protein.
For every bout of nausea or near-nausea there are the days after when cravings for food possess me. Forget the food pyramid old or new, I care nothing for balanced meals, I am eating foods based on cravings and apparently color.
This is my Color Me Diet.
My green days are made with broccoli and mesculun greens or mache with cucumbers.
Orange days are filled with yams and clementines, winter squash and carrots, possibly cheese.
Pink days are salmon filled washed down with glasses of pink grapefruit juice.
White days, cauliflower and potatoes, creamy soups and banana shakes.
Eggs straddle both orange and white. And, like the first bite of roast beef a runny egg or better, three of them can satiate me instantly days after treatment.
There are occasions when my diet is more Jackson Pollock than Ellsworth Kelly. Still, my food groups long to stay together. There are Fruit Days or Vegetable Afternoons. Last week I was overcome by a calcium craze; yogurts and cheeses and a glass of milk.
A 5 year old, at the sight of my bald and barren scalp said gleefully “you look like a baby”.
All this sleeping and eating and cell renewal, I think she nailed it on the head.
January 17, 2007 § 6 Comments
I received the email notification over a week ago:
Appointment reminder for Tuesday 1/16/2007
9:30am Dr Steven Come
10:00am CHAIR 20
I always liked the even number chairs.
Yesterday began with the ritual blood tests and taking of vital signs confirming I can tolerate another “treatment”. But first, an appointment with Dr Come.
The bad guys (aka cancer cells) have been sucking up the ACT/cytoxin cocktail since early December. Tricked into drinking a poison elixir (hee hee hee) my cancer cells are convulsing and spewing out of me in a river of Wisosky tea.
Dr Come is two steps ahead, he does not under estimate our enemy. Even as the tumor shrinks, and quite notably, he does not want to give them a chance to become immune. After 4 dense doses of ACT/cytoxin he’ll change my meds and on January 30th, two weeks from today, I’ll mainline Taxol instead. There’s always an “X” in these meds though they never use the word poison they are not afraid to drop a hint in naming.
By the time I entered the “treatment” room. It was a full house. All Monday treatments moved to Tuesday again due to the long holiday weekend. My regular nurse, Julie has Tuesday off. Jacqueline was subbing for her.
I eyed Chair 20. It was occupied. Marty handed over the parking ticket for a validation sticker and we waited as they reviewed the seating chart. Like a hot restaurant on a Friday night, we hung at the reception desk until they banished us to the waiting area. No bar or jazz trio in sight.
They called my name. My chair was ready.
The maitre’d offered me Chair 21.
“Do you have anything in an even number perhaps?”
The answer was no. This wasn’t a case of slipping her a $20 or even waiting for a chair to open up. You get what you get and you don’t get upset.
Chair 21, it was like going back in time.
I pushed into the blue vinyl recliner, accepted the blanket the Jacqueline offered and paid minimal attention to the drip. Only enough to alert the nurse of a burning sensation, the tell tale sign of a bad reaction. After one vial of ACT and a red flare-up on my hand near the infusion site we paused. Eventually it faded and the syringe in the IV resumed.
I pack for treatments like I would a road trip; ipod charged, slippers, thermos. Clementine’s and tea, my cell phone, my notebook, I don’t bother with the camera.
My favorite volunteer came by, Roger.
He offered us a Turkey sandwich. I passed, but I was happy to see that someone had tipped them off about his nausea-inducing menu a couple weeks back of egg salad and chicken salad sandwiches.
Roger had a present for me. Truth is I couldn’t help but notice the stash of holiday gift bags on the receptionist’s table. He pulled a bright red bag off the counter and handed it to me. I would have guessed a mug with Santa, maybe a stuffed reindeer; my hopes weren’t high for anything practical. Happily, my cleaning lady appreciated all my re-gifts; fruitcakes and candy dishes. I was sure this had her name on it as well.
The bag was heavier than expected. I opened it. Inside were three large cans of hair product; Hairspray, hair gel and giant red can called “Big Sexy Hair” root pump plus humidity resistant volumizing spray mousse.
“Roger, I don’t have hair.”
“Don’t worry,” he says, it will grow back.
I hand back two of three cans, it’s just too generous (and too heavy to carry). I hold on to the “Big Sexy Hair” root pump plus humidity resistant volumizing spray mousse.
I fall asleep for some period time. I dream about big sexy hair. When I wake up Marty tells me that Roger had come by again and sang me a lullaby.
I can hardly wait for my next treatment.
January 4, 2007 § 8 Comments
The treatment area was jumping yesterday. All those Monday patients shifted into a Tuesday slot thanks to the New Year holiday.
What could have easily been the equivalent of a traffic jam at the lab turned into more good luck for me. Chair 8 was occupied and in a last minute shuffle, I was upgrade to Chair 1. Numero uno. From the corner lot, I had a birds-eye view of the room I am not allowed to photograph. Lots of blue vinyl chairs with IV hook-ups surrounded by faded geometric curtains in shades of blue.
To my left, the tiny Asian woman with her mother, or was it her sister. The patient wore a wool cap, with tufts of hair peeking out. She was clearly a shedder, but resisting the shave. What a teeny tiny woman, maybe 80 lbs. I suspect she was always small and the chemo had taken her to a new low. Their station sounded like checkout at the Supermarket 88. I couldn’t understand a thing.
Next to her, an older woman sat in the chair accompanied by I suspect her husband. The TV was blaring, the couple wasn’t talking to each other. I caught a few melodramatic pleas. I had forgotten how over-the-top soap operas were.
I was assigned Nurse Nicole for Tuesdays drip. She turned the volume down on the soaps. Thank you. My regular Nurse, Julie had the day off. I missed Julie. Especially since nurse Nicole played hide and seek with my veins. Or rather my veins played hide and seek with Nurse Nicole. After two difficult and unsuccesful tries she sought her supervisor for assistance. Thank you. When I suggested spots that seemed IV friendly like the inside of my arm vs. the backside of my bony hand, Nicole pointed out that the Adriomyacin was too toxic to put into something so close to a joint. If it gets into the tissue it could result in permanent muscle damage. Now that’s the way to kick off an afternoon of an IV drip.
Rodger the volunteer came by for a visit peddling lunches. I have to wonder, who on a drip of Adriomyacin and Cytoxin craves egg salad or chicken salad sandwich? Certainly not the teen tiny woman. Maybe the husband of the soap opera fan. Just the thought of mayonnaise made my stomach turn; the color, the texture and the odds that it’s turning bad in their little white lunch bags.
Rodger wanted to help, and I wanted to help him so I put aside the video iPod and swiched HEROS to pause. Then, I asked Roger if he would fill my thermos with hot water. He was happy. I was hydrating.
Even as I babble about my chemo adventures; my chair neighbors and the roaming volunteer. The high that afternoon, was a surprise visit from Dr Come. This guy really impresses me. He is down to earth, soft spoken, sharp as a tack and always available to say hello. Initially, I braced myself for trouble. Did I have another blog faux pas on my hands? There was no mentioned of the forbotten pictures.
Instead it was tumor talk and what I had been feeling, or not feeling was confirmed. After two doses of the heavy stuff and my blood pulsing with dose number three, my golf ball sized tumor has shrunk, significantly, for real.
It’s true, what doesn’t kill me makes me stronger.
Day two is never easy. Tomorrow will be better. Still, there is a flip side to the fact that I totally felt like crap today, nauseous and contorted with discomfort. My tumor is shrinking and for the first time in 20 years, I have a secret stash of the uber alternative meds to generate an appetite or launch a party.
January 2, 2007 § 9 Comments
It was a mellow week around here. If you don’t count the dining room table catching fire. Tip: never mix floating candles with birthday balloons.
I slept a lot. I watched movies. I made pots of soup and went to holiday parties at the home of close friends. My sister and nephew visited each with their fabulous entourage. I exercised and saw my acupuncturist. It was all-good. It’s been two weeks since my last treatment. Naturally, I feel great. That will change.
Tomorrow I hit the wall and the wall hits me back, harder.
Appointment reminder for Tuesday 1/2/2007
11:30am CHAIR 8
I like the even numbered chairs.
It’s been two months and I finally own up to my cancer. I suffer from chronic optimism so it’s really not that bad. It could be so much worse. It’s totally treatable and there is so much that been a gift:
I’ve been craving healthy foods. I’ve lost a few pounds. My business partner and my friends have amazed me. Marty is finer than I thought possible. Frannie is as compassionate as she is sweet; we can play dress up as long as I have first dibs on all the wigs and permission to hoard the hats.
On the subject of hats, I’ve been to Bloomingdales, Barney’s and Bebe and they have nothing on the Friendship Boutique at The Dana Farber Cancer Institute.
Tip: enter through the lobby and take the elevator to the 9th floor.
LB and DD joined me on my first visit to the shop where I made the mistake of pulling into the hospital parking lot earmarked for patients. From there it was direct access to the hospital. Direct access to the 3rd floor, Pediatric Oncology and the Pediatric Brain Tumor unit.
I think I speak for all of us when I say being poisoned and losing your hair never looked so good. I continue to feel lucky.
Happy New Year and all things good to all of you.
January 2, 2007 Comments Off on new year new hair