Ready For The Chemotherapy Side Effects?

I went to college in the middle sixties. My friends and I marked the passage of time in many ways and one involved the release of new albums by our favorite bands-- the Beatles, Stones, Pink Floyd, Who, Airplane, Big Brother, Dead, etc. When we got wind that a new Stones album, for example, was coming down the pike, some of us would shop around for the finest LSD to commemorate the event. When Between the Buttons came out in February 1967, many of us had heard it already because the U.K. company had released it a month early in the hope of stacking up some heavy import sales from America. The American company had a smart defense: two tracks that weren't included on the British release... and big ones: "Let's Spend the Night Together" and "Ruby Tuesday."

By 1967 Dean Tilley had already kicked me off the campus as a danger to other students and I was living in a house in lovely Setauket. I came to consciousness after a full night of non-stop Between the Buttons listening in a tree next to my bedroom where the turntable was set to play side one over and over. Satisfying experience! I climbed down from the tree, got in my car, drove to the campus barber shop and had my head shaved. Hippies didn't do that then. But my girlfriend, Chris, was a model and she kept her head shaved for wigs and I loved how her head felt so... what the hey.

Since then, I've grown my hair and beard out from time to time and I've kept them close-cropped as well. I don't spend much time looking in the mirror and don't obsess over how I look. When I was diagnosed with mantle cell lymphoma and decided to treat it with chemotherapy, I didn't think a lot about the side effects of the treatment. I knew-- intellectually-- they could be brutal. "Could be" often means "but probably not for me." Roland, my best friend and primary caretaker and guide through this mess, seemed most concerned that my hair would fall out. He lives in dread of cancer because of his own hair. Roland takes good care of his appearance and looks fit and at least a decade younger than he is. Losing his hair is as unthinkable for him as it is uninteresting for me. No one who sees me knows if my hair is out because of the chemo or because I shaved it. I don't know either.

But there are other side effects-- and that's the chemo. My doctor's primary concern, of course, is using the chemo to kick the butt of the cancer. She says it's working-- and working very well. The day-to-day confrontation with the side effects, on the other hand... well, that's primarily my problem, the bane of my day-to-day. And it's not hair loss.




I don't want to turn this post into a pity session about the pain and anguish of chemo side effects. It's worse than anything I ever read, but I didn't read as deeply as I probably should have. Maybe if I knew in advance what was waiting for me-- as though there is any way to know; there isn't-- I would have chosen to try curing the cancer holistically with a naturopath. Too late now. I just want to bring up one side effect: neuropathy, a nerve disease related to one of the most virulent of the chemo drugs they were giving me: Velcade (bortezomib). As usual, the explanation starts with "every person’s experience with peripheral neuropathy can be as unique as the individual." So nothing definitive. My doctor told me that only 10% of the patients who mainline the velcade get neuropathy and only 3% of the people who get a fatty tissue injection get it-- and that I would be getting the fatty tissue injections. So a 97% chance of no neuropathy. Today neuropathy consumes my life, and I've learned it sometimes lasts forever and never goes away. Below are some of the symptoms, but keep in mind that they are happening simultaneously with other unrelated side effects-- like the pain from my broken ribs and the debilitating constipation and inability to eat as well as other recurring horrors.

At first, you may notice numbness, tingling, abnormal sensations, or pain in your feet.  Some people feel like they have socks on, even though they are barefoot. Over time, this feeling spreads to your legs and hands.

You may find it harder and harder to walk. Your legs feel heavy. You have to drag yourself up the stairs. You find yourself losing your balance, not being exactly sure where your feet are; so, you stumble into things or fall. To keep your balance, you are likely to widen your way of walking, and your walking becomes less rhythmic or fluid.

As for your hands, you think you have a good grip on something, like your keys, but they drop right out of your hands. In the worst cases, you can end up in a wheelchair. Some neuropathies can be fatal.

Peripheral neuropathy symptoms and signs can vary in how they begin. Some neuropathies come on suddenly; others gradually over many years. There are three types of peripheral nerves affected, and symptoms depend on these nerves and their location:

1 Sensory Nerves: affect sensation
2 Autonomic Nerves: affect internal organ functions; and,
3 Motor Nerves: affect muscles.

Many types of peripheral neuropathy affect all three types of nerves to various degrees, but some affect only one or two.

Here are some peripheral neuropathy symptoms and warning signs as described by patients:

Weakness in the Arms or Legs

Legs: Usually caused by damage to the motor nerves, leg symptoms often include difficulty walking or running; a feeling of "heaviness" in your legs; finding it takes a lot of effort just to climb the stairs; stumbling or tiring easily. Muscle cramps may be common.

Arms: In the arms, you may find it difficult to carry groceries, open jars, turn door knobs or take care of your personal grooming. A common frustration is dropping things.

Numbness, Tingling and Pain

Sensory nerves, when damaged, can cause various symptoms. Early on, there may be spontaneous sensations, called paresthesias, which include numbness, tingling, pinching, sharp, deep stabs, electric shocks, or buzzing. These sensations are usually worse at night, and sometimes become painful and severe.

You may also experience unpleasant abnormal sensations when you touch something, sensations called dysesthesias because they are caused by stimuli.

Or, you may find yourself feeling nothing at all, in this case experiencing anesthesia, a lessening or absence of sensation.

Impaired Sense of Position

When you lose the ability to “sense” or feel your feet, you may find yourself being uncoordinated because when you walk because you are not sure about the placement of your feet. Patients may find themselves walking differently without really knowing how or why they are doing so. Chances are they have either widened their style of walking (in an unconscious effort to keep their balance) or they may be dragging their feet.

“Glove and Stocking Sensation”

This phrase describes what doctors call a patient’s odd feeling of wearing stockings or gloves or slippers when, in fact, the patient’s hands and feet are completely bare.

Symptoms of Autonomic Damage

When it occurs, autonomic nerve damage can potentially cause: a drop in blood pressure and, consequently, dizziness when standing up; intestinal difficulties such as constipation or diarrhea; sexual dysfunction; thinning of the skin (with susceptibility to bruising and poor healing), and other symptoms.

And you may-- or may not-- live an extra 12-15 years into your 70s or 80s. Worth it? Let me mention Medicare Part D, Republican health care. Three doctors prescribed a lidocaine patch for me to help control the pain and to help ween me off the horrors of hillbilly heroin (Oxycontin), the drug Republican health care prefers to push to Americans since it prevents clear thinking. Humana is my Medicare insurance career. They refused to honor the prescriptions and wasted hours and hours of my time and my doctors' time making excuses for why they were refusing to cover the lidocaine patches, even though they are proven to work and Oxy is proven to work much less well.

Medicare is one of the most wonderful things America offers us as a people. Medicare Part D-- which was pushed through by Bush and the GOP and opposed by Democrats-- is an anti-patient system that is geared to fatten the bottom line of the big pharmaceutical companies that contribute so much to political campaigns. Since 1990, Big Pharma has given Republican congressional candidates $94,240,165 and given Democratic congressional candidates $70,327,235. Because of the connection, patients suffer and die. One day the Republican Party would like to turn all of Medicare into this type of a system. How ironic is it that the elderly are the ones they trick into voting for them?

One of my doctors said I shouldn't have used so much acid in the '60s