February 13 is as good a day as any to pick as pivotal. The night before, the neurosurgeon had shown me my brain scan featuring an oyster sized tumor. By all accounts he did an excellent job that afternoon of performing the intricate surgery to remove it. The next five days a pageant of doctors, chaplains, social workers, physical therapists and other professionals traipsed through my hospital room. The oncologist wrote out “adenocarinoma” for me. It took me another month to learn to pronounce it. I was hauled to assorted tests within the hospital, most involving radiation exposure. It was suggested that I outfit my house for my upcoming disabilities and start selling my assets. Assorted drugs with assorted side effects were pumped into me. I learned I had lung cancer but not much more.
Upon discharge an appointment had been scheduled for me in the medical buildings across the parking lot to start whole brain radiation (WBR). Through all this no one combed my hair, allowed me the basic hygiene of a bath, shower, or substitute or consulted with me about what choices or wishes I might have. My prized electric toothbrush had vanished in the hospital. My bones literally ached from one of the multiple drug side effects. I was drugged, filthy, horrified, terrified, ill and probably in shock.
My brother-in-law got me a list of best hospitals in the country while I was still in the hospital. I researched WBR as it applied to me and just said no. That was a start towards empowerment. Somehow I managed to stay calm, civilized and reasonable. I went home and cleaned myself. When I found that the tangled knots in my hair would need to be cut out was when I totally lost it. It wasn’t about the hair; I already knew I would loose it soon with chemo anyway. It was about everything. It was awhile before I became coherent. It was much longer before I started to feel empowered. Over the weeks my oncologist continued pressure to start WBR. Finally, my answer was to switch to a lung specialist oncologist at Cedars-Sinai. That was the one best thing I did.
That day in February everything about my life had changed. My plans and assumptions were shattered. My income completely stopped. My business immediately ended. Any sense of control I thought I had over my destiny vanished. I had stepped off the curb into a vast gulag peopled by the victims and survivors of cancer and those who love them. Unless you are one of the survivors behind whom the gate has locked you will never fully get it. Don’t ever say to one us: “I understand.” On the other hand, I think of the whole network as a big underground lake with boats filled by everyone who has been touched by cancer. As near as I can tell, that is most of us. The statistics are that one out of three people will die of cancer.
Two friends of three decades abandoned me. One of them never bothered to ask what was wrong with me. Knowing I was very ill was enough. There were a couple of smaller abandonments but far fewer than I expected. Far outweighing that were those people who drew me close to them the minute they knew. Obviously the word friend had been used entirely too loosely in the first place. Other friends, business customers, acquaintances and strangers have stepped up with amazing acts of kindness and generosity, each according to their own ability, with things I never would have asked or expected. I have been most grateful for and humbled by all of it, sometimes to the point of tears. I have received compassion, money, food, rishi treatments, research, phone calls, encouragement, elixirs, concert & theatre tickets, food, labor, discounts, a wig, a computer, hugs, books, cards in the mail, yoga treatments, vitamins, small and large acts of kindness and prayers. It has renewed my faith in the human condition. Ali Meshci at Alternative and Complimentary Medicine, Colonel Dhansa at the Juice Works, acupuncturist Sue Yuan and Collette at Orga Spa have been invaluable, generously giving their time, expertise, compassion and friendship well above the call of duty.
It is ten months later. I am still alive and relatively healthy. I have survived two lines of chemotherapy, radiation to the bed of the brain tumor, another surgery, and 33 radiation sessions with accompanying severe skin burns, neuropathy and shingles. With all that have been assorted side effects that translate as short and long term damage. Yet, I am so far one of the very lucky ones. My energy levels are improving. I have had no symptoms from the cancer in my upper left lobe. I may yet beat the beast. I actually have a shot at a cure. My doctor and I are doing everything possible to expedite that.
Lung cancer is the number 1 killer of men and women. More people die of it than the next three cancers combined. As for my diagnosis, adenocarcinoma is not caused by smoking. If you are interested in showing compassion, know that it is at best rude to ask anyone with lung cancer that question. I am available in person, by phone or email to anyone who wants any help from me at all that I can give concerning the beast. I can be contacted through this magazine at firstname.lastname@example.org.
Note* The question of whether I smoked recently or at some time in the past is inevitable. The question is understandable. It makes the person who asked feel safe and allows them to distance themselves in good conscience while at the same time assigning blame to the victim. It is cruel. Know that 20% of victims never smoked, 40% didn’t smoke for decades and that regardless, no one deserves cancer.*
February 11, 2020