(Modified from a journal entry/family update email dated May 1, 2006. It may have been a day to celebrate Spring and May baskets, but for me it was “Mayday! Mayday!” — my own personal distress day.)
Putting chemotherapy drugs in the human body is like spraying pesticide on a garden. You might eradicate the tumor — or kill the bugs — but you’ll also wipe out a lot of healthy cells (or plants) that happen to be in the vicinity. I’m a health nut. And an avid gardener. I find it extremely ironic that the body I have maintained with fresh produce, home-squeezed juices and other natural products has essentially betrayed me. I never would have guessed that I’d one day find myself nurturing several organic crops in my back yard while being simultaneously infused with poisonous drugs. How did this happen to a “granola head?” Why wasn’t I aware of any warning signals? When did the bad cells start to cluster, mutate and grow? I may never know the answers this side of heaven. What I do know is that May 1, 2006, will be a day of remembrance for me the rest of my life. Here’s a run down of the afternoon’s events.
I’ve gotten used to parking in front of a building with CANCER CENTER on it. I’ve accepted the fact that I officially have a team of oncologists and a cancer diagnosis on my health record. So why do I still feeling like a sheep being led to the slaughter? My choices are limited. I can’t ignore the tumor and let it slowly wreak havoc in my body. Doctors can’t safely remove it with surgery. There’s no miracle or homeopathic supplement that has been proven to dissolve cancer cells. Therefore, I have reluctantly agreed to a traditional “combined modality” approach involving chemotherapy and radiation. Some choice.
I approach this formidable building with jaw set, emotions in check, hubby (Tim) in tow, and armed with a handful of encouraging cards that just happened to arrive from family and friends. (Thanks, guys!) For about two and a half hours, I am a prisoner of the cancer center. It’s my indoctrination day. All tests, consultations and surgeries have been leading to this commencement of treatment. My internal port awaits the cancer-seeking fluid that will pump into me for the next four straight days. The radiation therapists have my body mapped out in a computer file and are expecting to give me treatment #1. There’s even a locker with my name on it in their area. Yippee. Such an exclusive club they have here. But, first comes the patient education part. For an hour I sign papers and hear of potential side effects from my proposed treatments.
Port care: I’m prepped on what to look for if my chemo port line somehow gets “occluded” or blocked. It’s under my skin inside a vein near my collar bone and I’m taking a low dose of Coumadin to keep my blood from clotting around this device. The down side is that I could bruise more easily and have blood unexpectedly seep out of any orifice. Great! I should avoid binge drinking (ya think?) and broccoli in large amounts! (Seriously! It’s due to its high Vitamin K content.) Clots around or in this line are bad. The nurses will flush this tiny, flexible straw every time I’m in for a treatment or lab work to make sure it flows both ways. They will draw blood out to check my white and red blood cell count on a regular basis and they will push saline, blood thinner (Heperin) and vodka (just kidding) into the port depending on what the doctor orders.
Mouth care: I’m given a sheet of paper with 13 suggestions for avoiding “complications” from chemo. No dental work without prior approval. Darn, those cavities will have to wait until I’m done battling cancer. If my white count is low, forget about using dental floss. I could bleed to death or contract an infection. There’s a list of what to drink, swish, apply, suck on or chew if sores or dryness drive me nuts. I learn you can buy saliva substitutes for chronic dry mouth. (Who the heck buys spit? Yuck.)
Skin care: Radiation is essentially painless, much like getting any x-ray. However, the cumulative effect of multiple treatments of varying doses concentrated in a single area causes serious breakdown in the structure of the outer skin and underlying layers. What starts out as dryness may progress to itching, peeling, burning and blistering, much like a painful sunburn. It seems obvious that you would avoid heating pads, sun lamps and placing tape (!) on the affected skin, but there it is in black and white in case you’re sick – or stupid.
Chemo cautions: We watch an introductory video on chemotherapy that explains basic information. As part of their assault against cancer cells, chemo drugs will also attack your white and red blood cell counts. If my numbers in these areas drop, I will need to avoid crowds and anyone who is even considering sneezing. If an infection has a chance to get started in my body it can be a LIFE THREATENING SITUATION. (That is exactly how it is spelled out, in big, shouting, in-your-face-caps.) Okay, guess I’ll stay on top of any fever, chills, redness, etc. Whew. I’m starting to feel queasy just thinking about this stuff.
Now the really freaky safety warnings. I’ll be getting chemo directly into my bloodstream. It will come in contact with every cell and function in my body. And YET, I must take extra precautions to make sure it doesn’t come in contact with other living things. What’s wrong with this picture? It’s considered hazardous waste! After cruising around in my body, the stuff that doesn’t get used is eventually diluted and passed in the toilet. I must flush twice for 48 hours after the last drop has entered my port. However, if I get a wave of nausea and lose my lunch, I need to grab the rubber gloves to clean it up and only dispose of the vomit (or any other bodily fluid) in a special container and then remove it from my home. I’m given a spill kit and large HAZMAT bag should this happen. Any soiled towels or sheets that need laundering should not come in contact with anyone’s skin. I’m starting to identify with the lepers in the Bible. The phrase “if the disease doesn’t kill you, the treatment will” is a bit too real.
I am honestly feeling ill at this point and the educator tells me that my reaction is completely normal. My hubby is looking a bit green and we exchange nervous glances. I’ve had quite enough already and my head is spinning, wondering which symptoms and side effects I’ll actually get.
The nurse educator gives me a prescription for nausea, a prescription for numbing cream to apply to the port site so the honkin’ big needles don’t hurt so bad, a prescription for a mouth rinse in case I get sores. She gently recommends that I stock up on over-the-counter medications for both diarrhea and constipation, dry eyes and dry mouth. It’s sounding like a lovely summer of symptoms so diverse I might want to camp out no more than five feet from a commode.
One final release spells out a frightening list of risks and hazards that include hair loss, serious damage to tissues, sterility, bleeding…oh, and death. AND, the treatment may not even improve my condition. No guarantees. I give my consent to proceed with treatment, sign my life away and move to the chemo room with legs that feel like jello. The brave face is still there but my neck hairs are starting to prickle and I’ve got the “deer in headlights” paralysis going on, big time.
I’m not happy at all as I take a seat in the chemo room. I don’t want to join this club. I look around at the chatty ladies discussing wigs and the old man snoring in a recliner, and each has a tube going into their body with some type of chemo drug dripping from an IV tree. I’m thankful that I can now dig into all the fun cards I’ve been saving for some blissful distraction. Tim settles into a chair nearby and does some work on his laptop. Soon, my nurse approaches and introduces herself as “Mary Jo.” She’s petite with brown hair and eyes, just like me. I can trust this face. We get to know one another as she deftly maneuvers needles and tubes and bags. We’re both runners and have done some of the same local races. She’s in the soccer mom stage while I’ve moved on to empty nest, but we have a shared passion and she assures me I’ll be back out on the trails in no time. I so want to believe her.
The first bag that drips into me is some plain old saline followed by an antibiotic. Next is a blue-tinted bag of Mytomycin, the first chemo drug. I stare it down, cherishing my final moments before the poison begins its voyage into my bloodstream. Something in me wants to yell “NOOOOOOOoooooooo”and run screaming out of the room. I vow to fight it, but feel strangely like a spider about to be sprayed with whatever is in those cans that makes them stop and shrivel. The liquid is cool as it enters my port and it takes about 30 minutes to administer the dose. Tim types away, I read more cards, vowing to be strong and not fall apart. Nurse Mary Jo takes care of other patients and checks in on me periodically.
I’m almost done. The last chemo drug to be administered is 5-FU and I can think of more than a few related things I’d like to call it. This “juice” actually goes home with me and squirts into my port for the next four days straight. Walking and showering, eating and sleeping, I’m attached with a long leash of tubing curled up into what looks like a CD player bag. This bland accessory contains a computer of sorts with a keypad and it measures each mini-dose. It’s timed to be empty by the time I return in four days to be disconnected. I learn what to do if a hose gets crimped and the alarm goes off. Although the reset sequence sounds simple enough, I’m relieved that I can call a live person 24/7 should something go wrong. I don’t think I’ll remember which buttons to push if equipment holding hazardous material attached to my body starts malfunctioning.
Okay, patient education completed, first round of poisoning underway, and we’re off to Radiation for my first zapping. Tim has to chill in another waiting room as this area has its own hazards and warnings posted all over. The therapists are quick and professional and I’m in and out in minutes. Thank God we can now go home.
Back at the house, I start to make dinner and the chemo bag (hanging like a purse from my shoulder) gets between me and the stove. Instantly there is loud beeping and I quickly realize it’s not a cooking timer, but my stupid chemo computer! I’ve bumped the keypad and it’s freaking out. So am I. Oh crap, how do I reset? I just learned this stuff. Oh forget it – I’ll probably detonate the crazy thing pushing the wrong buttons. Where’s the phone number for the on-call nurse?
Such begins my first night as an official cancer patient. Frazzled, exhausted, overwhelmed, in a mental backlog of information to process, and beeping like a front end loader going in reverse.