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Today Cancer, Tomorrow The World – excerpt from the upcoming book about my battle with the Big C

September 21, 2012

I sit on the examination table in Clinic F to have my nephrostomy bandages redressed.

“I’m tired of being in pain,” I sigh to the nurse as she puts fresh bandages over the catheters in my back. “You know they say chemo and all that happens really depends on the individual. But I don’t believe it. I think they say that because they don’t want people to know that all they’re in for a solid wall of pain.”

“There are people who can work at their jobs during chemo, others don’t,” she clips, again matter-of-factly.

“In their case the cure is worse than the disease.” I said, hoping for a laugh. But again nothing. I know what the “F” in Clinic F stands for: tough Fucking room.

 

Her mind is buried in the indifference of function. I put on my shirt. “Chemo is kicking my ass.”

“It does that to some people,” she says matter-of-factly. “Affects everyone differently.”

“I had the shakes for hours, I was like a junkie.”

“It does that,” she again says matter-of-factly. “Affects everyone differently.”

“I don’t want to answer the phone. Talking to people makes me weaker because my mouth is filled with sores.”

“We’ll give you something for that. It’ll numb your mouth.”

“You mean you could have given me something before this happened?” I ask.

“Chemo affects everyone differently.”

Chemo affects everyone differently. It’s a lame excuse. I heard it many times. Well, if the oncologist can make you jump through the hoops of additional tests and exams to cover their ass from potential malpractice suits, then why the hell can’t they give you preventative drugs in advance to cover your ass from potential pain? Again, their standard excuse cast in metal is: “Chemo affects everyone differently.” But doesn’t cancer also affect everyone differently? And through clinical trials you concocted a specific chemo cocktail to target and destroy that particular tumor varietal strain? So then why don’t you also can’t you also create a cocktail of medications to alleviate the suffering patients experience that goes with your diagnosis before chemo and radiation? Shouldn’t care of the patient and cure of the disease be synchronized? They never gave equal time to the pain caused by their procedures. You’d think in all these years the medical field has advanced in cancer treatments, they would also have improved in eliminating the side effects of chemo beyond creating better lined brake pads to keep nausea in check. My stress is stretched out like a tennis net in a heated match between Pain and a Cure and as long as my health insurance covers the costs could care less about the score. But they set up a foundry of care where you’re supposed to blindly accept you fate during treatment and be a good patient by reducing yourself to a ventriloquist’s dummy on the oncologist’s knee and stick to the doctor’s scrip:

Oncologist: “You were unable to eat today, curled up in a ball shivering, and you have cankers lining your gums. I could have given you some medication to prevent this, do you know why?

Patient: (And the oncologist throws his voice into you) “Chemo affects everyone differently.”

Oncologist: “After you finish chemo, you might find out that chemo also damages the nerves in your hands and feet as well as nerves in your ears and affects your hearing. And if you had known this in advance I could have given you minerals as part of your hydration during chemo to reduce those potential effects of neruropy but I didn’t, and do you know why”

Patient: (And the oncologist throws his voice into you) “Chemo affects everyone differently.” (Suddenly the patient squirms and speaks in their own voice.) “Oh by the way, I’ve lost all respect for you and can’t find a reason to pay you.”

Oncologist: (Taken aback) Why is that?

Patient: “Chemo affects everyone differently.”

Months later, after I finished chemo, and its effects were retreating, I was beamed back into my life with heavy legs—they seemed encased in a light armor of drywall. I also had numb feet that were constantly asleep. And no matter how hard I stamped them, I couldn’t restore any feeling to them. They were stumps. If I wore sandals, I’d didn’t notice when they slipped off. At first I falsely assumed it was muscular problem and I was out of shape, but for the next several days the numbness and tingling shocks didn’t recede. When I tried to walk it felt like I was wearing tennis rackets on my feet struggling to shuffle through six-foot high snow drifts. The spaces of flesh between each bending joint of my fingers as well as the soles of my feet were like cardboard and each of my toes felt like they were crinkling were inside tiny paper bags. When I was in bare feet, I felt like I still wearing socks. I couldn’t run, or spring up on a surfboard. What was this?

When I was golfing and struggling to walk, I mentioned these symptons to a retired guy in his seventies who said, “That’s neuropathy. Older people like me get it.”

I smiled and said, “Well, I guess I caught up to you.”

Neuropathy? What the hell is that? I look it up on the Internet:

Neuropathy: the medical term for nerve damage, usually to the peripheral nerves in the hands, feet, arms, and legs. Chemotherapy drugs are toxic to healthy nerve cells, as well as to cancer cells. When those nerves begin to stop working, the result is tingling, numbness, weakness, and pain, even an impaired sense of touch. Neuropathy normally occurs when the outer sheathing or the myelin (protective covering) of nerve cells degenerate.   Without this protection the electrical signals are not transferred properly like if you stripped the covering off of the electrical wires in your house.

If possible, before beginning chemotherapy, talk to the doctor about which chemotherapy agent she plans to use and, if it’s one that’s likely to cause neuropathy, request amifostine as well.

A few small recent studies have shown that the minerals calcium and magnesium, given intravenously as part of hydration during chemotherapy, can help prevent neuropathy. This is also worth discussing with the doctor ahead of time.

I read further and found upbeat gems like “some chemo drugs cause damage to peripheral nerves” and  “in some cases it may be irreversible and never diminish in intensity.” Now you tell me! Color me informed with a useless crayon. Yet another bonus point on the lovely Dr. Sri Lanka’s lack-of-people-skills-and-patient-care tote board. Obviously she isn’t the only one suffering from nerve damage. When you’re diagnosed with cancer, your life has a hit-and-run collision at the intersection of What The-Hell-Happened? Boulevard. And Where-Am-I? Road.  You stagger away experiencing a concussion of chemo brain, unable to think clearly and effectively, but you’re expected to be able to research the treatment to ask all the pertinent questions about chemo’s side effects and preventative medications? Shouldn’t the oncologist at the scene of the accident have the responsibility to care for you? How could I request amifostine and calcium and magnesium as part of my hydration during chemotherapy to prevent neuropathy when I was never informed about neuropathy? It wasn’t my job to ask questions. It’s the oncologist’s job to provide answers.

I called the hospital, and talked to an oncology nurse, puzzled about neuropathy.

“But I thought chemo only goes after the rapidly reproducing cells in the body: stomach, mouth, hair. That’s all I heard about over and over. What does that have to do with the nerves in my legs and my hearing?”

She lowered her voice and simply replied, “It goes after everything.”

I was tempted to have the call transferred to Dr. Sri Lanka so I could tell her to go fuck herself. Why is it people who have all their feelings intact are so insensitive to the pain of others? Because they are numb their whole lives.

Yes, chemo affects people differently. I see these differently affected people as I walk slowly from oncology down the hallway to the Infusion Clinic. I feel like a marked-down item placed in a bargain bin. Just slogging along one-second-hand in front of the other on the Chemo clock and has my brain on  vapor lock. The only people who aren’t shuffling like they’re slogging through knee-high mud—the only people who aren’t sitting aghast or bowing with introspective-weighted heads with quiet resignation—the only people who aren’t dazed or stunned and holding onto someone for support—the only people who aren’t wincing from a newly felt pang——the only people who aren’t suffering any of the natural shocks the lack of their health-care insurance is err to, are the select ones chemo truly affect differently: brisk and brazen and focused and striding doctors in blue scrubs, immune from the blood but tuned-in to treasure of their profession. Their footwork supported by a level and hard dance floor, while everyone else is sliding and losing their balance on a slanting, slippery and tilting surface. You know why some doctors act they walk on water? It’s because everyone else around them is sinking.

I can’t get mad. If oncologists develop a callous in the world of pain instead of a warm embrace and a soft word and a gentle touch and eye contact. The self-contained Doctors are always quick to rely on schedules and procedures and cite results and doses. But their inflamed egos don’t consider one unknown factor in their equation: the pain I take home. The menu of the oncologist’s prescribed treatmentnever gave equal time to consider my pain an issue. (“Oh, anemia, bleeding, constipation, diarrhea, fatigue, mouth and throat changes. That’s to be expected. Didn’t you read the small print on the waiver? We’re also covered against war crimes. It’s all right there. You signed it”). They define the pain as side effects. Why do they call them side effects? There is nothing side about them. If they’re side effects why do they hit me head-on? Last I checked, if I’m the one experiencing nausea, loss of balance, difficulty hearing, bleeding, and flu-like symptoms, there is nothing side about these effects. And is a bullet fired into you body called a symptom? Like nausea is a side like French fries! I talked to other chemo victims who complained about numbness, only to have their oncologist shrug and dismiss the side effects by saying the issue is to “prolong life.” The only way a patient can counter a doctor’s professional distance that enables the physician to give his conscience a waiver on the collateral damage the patient suffers recovering from the treatment at home, is for the patient to become their own advocate and take aggressive steps to relieve their pain by detaching and creating a distance from the doctor.

Chemo doesn’t affect people differently—oncologists affect people differently.

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