The facts about chemotherapy are well known and easy to find.
The experience of chemotherapy is like no other, and not known to those who haven’t had it.
Chemotherapy is a big, scary word. Try saying it in a room full of middle-aged women, and watch how many of them will lower their heads and look away. They don’t know what “it” is, but they know that “it” could happen to them.
Chemotherapy is the standard of care for many types of cancer because it’s effective at killing cancer cells and because it increases survival rates across aggregate data, large samples of people.
Chemotherapy is not as bad as it used to be when larger doses were used, when there was less refinement as to who gets which combinations of drugs, and when there were fewer other drugs to combat some of the worst side effects of chemo.
Anyone who claims that chemo is “not that bad” now has no idea what they’re talking about.
Chemotherapy takes a person to the edge of what they would have thought was possible to endure. It may be like torture in that regard, though the context is entirely different, with a goal of healing and a phalanx of supportive health care givers.
Chemo’s effects are unknown, unpredictable, sometimes unstoppable. Some of its side effects may last the rest of a person’s life.
Chemo creates sensations that are not like other forms of pain, illness, discomfort.
Chemo has a built-in contradiction: its purpose is to kill cancer cells to save your life, and while doing that, it kills all sorts of other cells, from fast-growing hair follicles to the lining of your stomach, to God knows what.
The only way to survive it is to hold onto whatever you believe in.
Some patients hold onto their belief in what the doctors say. Some patients believe only in themselves and their own fortitude.
I survived it by accepting it as a ritual of purification.
Chemotherapy begins before it begins. First the doctors figure out the combination of drugs and how much you’re likely to withstand. Then, if it’s going to be an intravenous drip, they may spare your veins by surgically cutting a small hole in your chest to insert a portacather. This “port” gets opened up for each infusion and each blood draw and is usually removed, again surgically, when treatment is over. It leaves a scar.
Chemotherapy is administered for a determined number of “rounds” every few weeks over a period of months. A chemotherapy session involves sitting or lying down, usually in a room or area with other patients, for hours while drugs drip from plastic bags held high on a machine that regulates the speed of the infusion.
Along with the chemo drugs, there may be a bag or two of saline solution to hydrate the body, another bag that includes anti-nausea meds and Benadryl to prevent an allergic reaction. The continuous ca-chunk sound of the machine, over hours and hours and hours, becomes its own nightmare for some. I found it to be rhythmic enough that it was an aid to meditation during the hours I sat praying, knitting, watching the chemo nurses tend to everyone in the room.
During the infusion, things may not be so bad, as the drugs take a while to take effect. Often chemo patients have to come back the following day for a shot of Neulasta, which prevents toxic shock from the chemo. Neulasta itself often causes severe bone pain, and many take Claritin to combat the Neulasta. I took an extra IV bag of hydration with each Neulasta shot, and that made it easier.
Once the drugs are administered, then it’s time to get low and wait for how bad it will be. What happens during the first round will usually repeat with each round, though as the months go by, the fatigue is cumulative and gets worse.
For each of my six rounds of chemo, I was relatively OK the day of the infusion and even the next day, though I was ravenous from the steroids I had to take to prevent toxic shock.
Days 3, 4 and 5, I descended into the underworld. The experience is one of not feeling that you will ever climb out of a pit of revolting toxicity, knowing mentally that you will, but not being able to fully believe it. Ordinary reality is suspended somewhat during this period one spends in another dimension.
I would prepare for these expected days by having round-the-clock anti-nausea meds handy, my marijuana and water pipe, reading material and healing sound CDs to listen to. Then I could do nothing but lie under covers for hours on end.
I never threw up, not once. My fingernails did not turn black and fall out. I was spared the digestive trouble, anemia and neuropathy that many people get.
During all those months, I felt the quality of the Nearness of God continuously, as a subtle, consistent presence and as the Guide who placed in my mind instructions for energies to invoke.
I recalled how my old Sufi teacher Pir Vilayat used to sing “Om Namah Shivaya” to and with the Hindu God Shiva, and I sang that mantra, among others, on daily walks.
Shiva, and his female counterpart, called Kali, Durga, and other names, are archetypes about power, destruction of illusions, and swift change. Shiva and Kali sweep through your life ruthlessly, waiting on the other side for you to emerge transformed.
In one Hindu myth (a story that carries non-factual truth), some lower deities are churning an ocean of milk to make “amrita,” a nectar of immortality, when they come across a deadly poison. Shiva volunteers to swallow this poison in order to save all living beings. He is then marked by this act: his neck turns blue.
I invoked Shiva’s willingness to drink poison to save my life.
During one of my last treatments, my oncologist had reviewed my blood test and was marveling that I had excellent hemoglobin and red cell counts despite the onslaught. She said she was seeing this, also, with another of her patients who was taking Chinese herbal medicine.
“So what this is really about,” I said to her, “is a purification of the blood.” She lit up and said: “Yes, I’m glad you see that.”
We call it “life blood.” It contains the physical and spiritual elements of earth, water, fire, air, and ether. Healing through the blood is healing in the unseen worlds as well.
Chemotherapy is a conundrum in that it kills many things inside you in order to save your life, for now, and for an unknown bit of the future.