Wednesday, May 02, 2007

Burn, Baby, Burn

In the last installment of Cancer Boy, we left our hero after having completed eight weeks of induction chemotherapy. Next on Dr. Evil’s agenda was a ten-week period of chemoradiotherapy, which would combine the finest elements of chemotherapy and radiation in order to rid me of that pesky tumor on the base of my tongue. The ten weeks were divided into 5 two-week cycles. The first week was inpatient for chemo and twice daily radiation, and the second week at home to experience the full extent of the side effects (with a return trip every Tuesday for more chemo and a check-up). I was warned up front by my doc that this portion of the treatment would be absolutely miserable and I should expect some pretty severe side effects, difficulty eating, and weight loss. In return, he would kill my cancer and a magic unicorn would take me home when it was all over. I signed a waiver giving him permission to bring it, and in return he promised he’d try not to kill me.

I would check into the hospital every Sunday at noon, get my room assignment, unpack my lingerie, porn, and troll dolls, and wait for my nurse and doc. The nurse would draw some blood and jam the IV needles in my port to ready it for the collection of toxins and other experimental concoctions that they were working on that week, while the doc on call would give me the once over to wager whether their plans would end in my early demise. I was approved for action and Sunday evening they would start me on my new chemo plan.

My new drugs of choice:

Fluorouracil aka 5FU: They would start the IV on this one at around 6:30 p.m. on Sunday and it would run continuously for five days until they would release me 120 hours later. I could expect mouth sores, loss of taste, and other delightful abdominal ailments from 5 FU. However, if you remember your 8th grade biochemistry, 5-FU is a commonly used pyrimidine antagonist. Like the other pyrimidine antagonists, 5-FU is similar in structure to the normal molecule. It functions to inhibit DNA synthesis both by blocking the formation of normal pyrimidine nucleotides via enzyme inhibition and by interfering with DNA synthesis after incorporation into a growing DNA molecule. I stole that from some Emory University site, but basically it means that the cancer cells will fry more easily when I get sent to radiation.

Hydroxyurea aka Hydrea: This came in a giant capsule form that I took Sunday night and then two hours before each radiation treatment. This might cause nausea and vomiting, so I’d also get my anti-nausea and vomiting drugs with it. Again, going back to 8th grade biochem and Emory University, hydrea is thought to inhibit DNA synthesis and prevent cell division, but does not interfere with the production of RNA or protein. Though the exact mechanism of this drug remains unknown, research suggests that DNA synthesis is blocked by interfering with the activity of an enzyme that is important for the process. That basically it means that the cancer cells will fry more easily when I get sent to radiation.

Cetuximab aka Erbitux: This is the clinical trial drug that was also used in the first part of the chemo process. I would get this one every Monday so that Dr. Evil could see what would happen if they throw it in the mix with the other two drugs and some radiation. This was the guinea pig portion of my treatment. The people in the other half of the study would get Erbitux with a different combo of drugs and once daily radiation for seven weeks. May the better half live!

The official name of the the study was A Randomized Phase II Trial of Concurrent Chemoradiation with Cetuximab (ERBITUX®), 5 Fluorouracil, Hydroxyurea, and Twice-daily Radiation (CetuxFHX) versus Cextuximab (ERBITUX®), Cisplatin, and Accelerated Radiation with Concomitant Boost (CetuxPX) after Induction Chemotherapy in Patients with Locally Advanced Head and Neck Cancer. For anyone not familiar with these clinical trials, in this trial people are randomly assigned to each group and both groups receive well-established treatment regimens without it being known which may be better. Then they toss the new drug, Cetuximab, on top to see what happens. That combo isn’t approved by the FDA for head and neck cancer, so I hopefully get to help prove it’s effective.

A couple weeks before this phase I had to go for a radiation simulation, in which they do some CT scans and make you a nifty “mask” for use during the treatments. The mask consisted of three fiberglass type strips that were molded to my face – one under the chin, one over the chin, and one across the forehead. Once it’s fit to your face, they can then strap your head tightly to the table like Hannibal Lecter so you don’t move or attempt to eat anyone while getting shot with radiation. I guess accuracy and personal safety is a priority to these people.

My first radiation treatment would be any time between 5:15 a.m. and 6:30 a.m. Not only are they sadistic, but also they wake you early for it. The main objective during radiation is to hold perfectly still and not freak out at being strapped in for 20 minutes. I only freaked a little my first time and they recommended a nice little sedative for future treatments. I capitulated and was in total control of my fingers and total control of my brain for future sessions. I even told them no hurry – I wouldn’t go insane, they wanted me sedated. Only one time after that I had to ask to get out of my mask, when I told them I had some mucous issues. “Spit or swallow?” my tech asked. I replied that it was the first time I’ve been asked that question. My techs Meghan and Kenny were always very cool and got a good laugh. By the way, I swallowed. Once settled in, the actual procedure entailed receiving doses, not unlike an x-ray, each for about 30-60 seconds from about 12 different positions around my head, zapping everything from my jaw line to my collarbone. I was such a model patient I settled into the 5:15 slot so I wouldn’t start their day with any problems. Now if you were paying attention, you might remember that I needed to take my Hydrea two hours before radiation. So make it a 3:15 a.m. wake up call. In fact, let’s review a typical relaxing day in the oncology wing…

Midnight: Vital signs taken by nurse’s aide (every 4 hrs)
3:15 a.m. – Wake up call to take Hydrea, note roosters are still sleeping
3:20 a.m. – Try to figure out why there are roosters in my room
3:30 a.m. – Clean neck in preparation of radiation to avoid wet, messy explosions
4:00 a.m. – Vital signs – still alive
4:15 a.m. – Request sedative and morphine as needed
4:30 a.m. – Cue up Mother’s Little Helper on iPod, take drugs and meditate
4:44 a.m. – Sink into deep meditative state, minutes from total enlightenment
4:45 a.m. – Pick up by patient escort, discuss implications of latest UN resolutions while in transit
5:00 a.m. -- Arrive at radiation oncology for 5:15 treatment, learn about the Inca, Aztec, and Spanish influence in Mexico on waiting room TV. Get price of pork bellies from farm report if behind schedule.
5:30 a.m. – Called in for treatment, arms bound to the side, head strapped tightly to the table, ordered to lay still for 10 to 20 minutes depending on cycle. Additional five minutes required on Mondays for x-rays to align everything and make sure my head hasn’t grown.
6:00 a.m. – Learn more than I really care to about crocodiles from Animal Planet on waiting room TV
6:30 a.m. – Patient escort back to room. Discuss Federal Reserve economic policies in transit
6:45 a.m. – Try to enjoy morphine/sedative buzz and catch up on some sleep.
7:00 a.m. – Welcome by new shift nurse
7:15 a.m. – Request more morphine as needed, return to sleep
8:00 a.m. – Wake up for vital signs, return to sleep
9:00 a.m. – Wake up for pre-rounds by physician assistant and resident on call, argue over how much weight I’ve lost, return to sleep
9:30 a.m. – Wake up for first feeding, return to sleep
10:00 a.m. – Wake up for rounds by physician assistant, resident on call, and attending physician, address drastic weight loss issues, return to sleep
10:15 – Wake up for rounds by research nurse and nurse practitioner, return to sleep
10:45 – Wake up for rounds by nutritionist to address weight loss issues. She nods in sympathy like Deb in Napoleon Dynamite and agrees that I’m not going to turn to dust.
Oh, and return to sleep.
11:30 – Wake up from nurse in radiation oncology to examine burns on my neck and try something new. Return to sleep.
Noon – Vital signs. Still alive.
12:15 p.m. – Access wireless connection to check email, update fantasy hockey lineup and attempt to find porn sites not filtered by UC.
1:00 p.m. – Turn on TV, check CNN Headline News for uplifting stories about war casualties and missing white people. Wonder why black people don’t get abducted or lost nearly as often.
2:00 p.m. – Patient escort to radiation, discuss investment opportunities resulting from growing global economy while in transit.
2:15 p.m. – Arrive for treatment, forced to watch Maury with fellow drugged up patients who somehow seem entertained by it.
2:45 p.m. – Arms bound, head strapped, zapped with ray gun for second time that day.
3:15 p.m. – Watch Judge Judy on waiting room TV, losing will to live
3:30 p.m. – Patient escort back to room, discuss merits of 3-4 defense
4:00 p.m. – Vital signs, still kicking
4:15 p.m. – Coat neck with Neosporin, greatly reduce chances of suffering manual strangulation
4:45 p.m. – Take care of second feeding of the day, try not to puke
5:00 p.m. – Check email, send messages begging to bust me out early
6:00 p.m. – Call DirecTV and attempt to order NHL Season Pass for my room
8:00 p.m. – Vital signs, barely clinging to life
8:30 p.m. – Flip through channels hoping to find a Pauly Shore movie
9:30 p.m. – Nightly call from Mrs. F’er. Convince her that life is swell so she can get back to memorizing cranial nerves for upcoming exam
10:00 p.m. – Begin nightly primping routine with collection of ointments, gels, rinses, etc that are supposed to keep me alive
10:30 p.m. – Turn on Letterman, attempt to go to sleep
11:55 p.m. – Finally succeed in dozing off
Midnight – Wake up for vital signs… argh.

During the second cycle, mouth sores, icky mucous, sore throat, and loss of taste made eating as attractive as a date with Rosie O’Donnell, so I gave up food cold turkey. Not just cold turkey, but all food. I barely managed to drink one high calorie shake each day, but my docs didn’t think 500 calories per day would cut it and scheduled me for a feeding tube. After the procedure I woke up with a small rubber tube protruding from my stomach just under my last rib on my left side. They gave me a syringe to flush it, a case of canned nutritional drinks to sustain me, and a warning to keep the Jack Daniels out of there. Meal times simply involved pouring a couple cans in an IV type bag and spending a couple hours letting it drip into my stomach while trying to determine what kind of wine goes best with something called Jevity 1.2. I was also dehydrated and even got the home version IV pole so I could give myself a liter of saline daily through my port in between my normal feedings. The home health care company sent over a plethora of supplies, and I’m pretty sure I could use the leftovers to supply the Red Cross when the next catastrophe hits.

It did get ugly for a while, where even I failed to see any humor – if you’re just here for the laughs, you can skip the next paragraph.

I’d say somewhere in the middle of this, probably in the third cycle, it got as bad as the doc had promised. Maybe even a little worse than I had imagined. I was losing about a pound and a half a day during my hunger strike and eventually ended up 27 pounds lighter than when I had started. I hadn’t been that skinny since high school when I had the metabolism of a Chihuahua on diet pills and couldn’t get laid since girls feared I might fall in. Well, that and I was a total geek. But I digress. I had already lost most of my hair during the previous chemo cycles, but now my skin dried out to the point that you could trace my path by following the trail of body dandruff I’d leave in my midst. And then it gets disgusting… please, skip ahead to the next paragraph. In addition to all the other pleasantries, that icky mucous I told you about continued to get worse. Gobs of it would clog up my mouth and throat. It was an ugly pale yellow and at it’s worst, the consistency of yogurt and impossible to spit up, instead choking and gagging me until I vomited it up several times a day. Lovely. I tried to warn you. And if the timing was right, I could even vomit up some of the delicious crap that I spent hours dripping into my feeding tube along with it. Followed by admonishments the next week for losing weight. Some time was spent in the mirror cursing the tumor, the mucous, myself, my doctors or the Chicago Blackhawks; other time was spent just lying on the floor begging some unknown force to make it go away while I wondered how I would make it through another two, four or six weeks. But even all that got to be part of the routine that did get me through it one day at a time.

After I had just checked in for my fourth cycle, I felt like crap and now had a pain in my back. I was also trying to get some nutrition in my feeding tube as the pain grew. And grew. It was like nothing I had ever felt before. So I tried to ignore it. That should make it go away. But like a pissed off two-year old, it refused to be ignored. I got ill and contorted my body any way it would go to try and alleviate the pain, and before I knew it I was kneeling on all fours on my bed, puking into a bucket and holding my back with an expression on my face that said, “Just kill me now.” My nurse happened to walk by, poked her head in and asked cheerily, “Is everything okay here, Mr. F’er?” I’m not a violent person by nature, but if I weren’t busy hurling and clawing at my own back I might have gnawed her ear off. She did regain a few points by getting the doctor on call there pretty quickly. He was able to convince me that examining me doggy style was not very dignified and I might be more comfortable sitting back. I obliged and he surmised I might have a kidney stone, and he rewarded me with massive doses of IV morphine. A CT scan confirmed his diagnosis and he informed me that it was small enough that it should pass on its own. So I buckled up with my morphine dealer nurse and tried to think about candy canes and Betty Rubble until the pain slowly subsided six hours later. Just the memory of that night caused me to chug a bottle of water right now to flush my kidneys out.

Also in the fourth cycle, an unexpected side effect of the Erbitux reared its ugly head. It had made the skin more sensitive to the radiation and, instead of just a couple bad spots, my entire neck was burned as if it had been stuck in a rotisserie oven for a week. With the proper spices from Kenny Rogers Roasters it might have made a nice meal in a primitive Paraguay village, but here it elevated me to celebrity status as the staff set up photo shoots so they could share the results with the rest of the medical community. Unfortunately I was on morphine at the time and failed to execute an agreement that might pay me royalties. Twice daily I’d have to soak my neck to clean it and re-apply the ointment or cream they gave me, which was as much fun as a full Brazilian bikini wax. Or so I hear. After that, I’d put on my customized t-shirt with a cut out neck (to avoid sticking), and sometimes I’d add legwarmers for that Jennifer Beale Flashdance effect. What a feeling! As much as I enjoyed reliving the 80’s in my Princess Reeboks, I added this new routine to my list of cursed activities.

By the fifth cycle, I was master of my disconsolate domain. I knew the routine and it was just a matter of mechanically knocking it out another two weeks without trying to think about it. Kind of like a weathered dancer at a low-rent strip club. I mostly took drugs and slept, and had taken to merely grunting at anyone who interfered with that. The cool thing was that people seemed to understand and accepted it. Everyone seemed excited that I was in my last cycle, but I was too bitter to share in it and would have rather they apologized for the first four cycles. By the time the last day of my inpatient stay came around, I did smile politely when the radiation oncology staff presented me with a certificate of completion. And right before I checked out, my favorite oncology nurses sang me a tune and presented me with a shirt signed by the staff, although I never remember being treated by Emma Roids or Willie Maykette. (Okay, I admit the last one was a little dark.)

I had to go back the following Tuesday for my final chemo treatment, which was rather anti-climatic, and I left pissed off that I didn’t get a certificate or a t-shirt. I couldn’t find the magic unicorn to take me home, either.

The following weeks post-treatment would involve a series of follow up appointments to track my recovery and, after approximately 4-6 weeks, a series of tests to make sure that the cancer packed up and left. I’ll let you know what happens in my next update.

10 comments:

lim said...

"Laughter through tears is my favorite emotion"

The unicorn, it's all coming together now, full circle. I see lots of lights.

A chihuahua on diet pills....classic.

ROCK ON Sid.

keysunset said...

merely grunting at anyone who interfered with that.

This was different than your usual behavior?

j/k, running away now ...

The cool thing was that people seemed to understand and accepted it.

They love you just the way you are ... whatever that are is. Or something.

I second lim ROCK ON Sid.

del said...

You forgot the part about getting the lighted unicorn horn inserted. Or am I giving away the next blog?

(And I 3rd LIM's comment)

HR said...

[i]May the better half live![/i]

Are you making fun of cancer? Are you making fun of cancer?! Cuz I've had cancer, and there's nothing funny about cancer...

I'm pretty sure you're looking at a Rose with something called Jevity 1.2. The guys with the AIDS all recommend it.

[i]I was master of my disconsolate domain. I knew the routine and it was just a matter of mechanically knocking it out another two weeks without trying to think about it. Kind of like a weathered dancer at a low-rent strip club. I mostly took drugs and slept, and had taken to merely grunting at anyone who interfered with that.[/i]

I'm pretty sure I never read, "Pretend you're a weathered dancer in a low-rent strip club" on the "Tips for Coping with Cancer" page of the ACS, so I'm guessing you came up with that method on your own. And really, who [i]hasn't[/i] wanted to pretend to be a weathered dancer in a low-rent strip club. You're a genius!

I'm going to confess that I've been reading this other guy's cancer blog, and I'm so tempted to send him this, but honestly it would kill him to know how unfunny he is.

Oh, and that Hugh MacLeod guy is using your Rock On thing. And I'm pretty sure he's never rocked a day in his life.

HR said...

Oh crap, I fuck*d up the tags...

Moist Rub said...

Sid, you are truly a remarkable human being. Or maybe you are remarkably being human. Either way, you are much better than I am, that's for sure.

Emma Roids and Willie Mayekette cracked me up. Make sure Willie Cumminner signs your shirt after you star in your first porn.

I love you.

Leplov said...

When reading about 5-FU I kept thinking it stood for "Fuck You 5 times you bastard tumor!!!"

I'm so sorry you had to go through all of that nightmare, dear boy.

But you are such a cool dude there was no way it could beat you!

Are you feelin' the love from all of us?

EAM said...

The nurse would draw some blood and jam...
When I read that line I can't help but picture Sid with jam in his veins.

the doc on call would give me the once over to wager whether their plans would end in my early demise
I picture that doc going to hang out with all the other docs where they all wager on their patients in a crazy Parcheesi-like game.

K said...

Wow, it amazes me that you were even able to keep up with the boards, blog and your sense of humor! Just reading about your experiences is painful, I'm so sorry you had to go through that.

I love that MR loves you!

eat it said...

Tomatoes have great cancer fighting properties. Eat lots of them. Take care.