XIII Ways of Looking at Cancer

With respects to Wallace Stevens

I.                    Cancer roars through my blood, devouring a life, washing away dreams, eroding hope, creating spaces for new possibilities.

II.                  They arrived with only 2 sets of clothing apiece. At the border, my government stripped away the four youngest children, sending them to the desert with someone who doesn’t speak their language. Cancer is not the only journey that’s hard.

III.                As evening falls, phone calls and emails and doctors’ appointments are past, chores and medications are dispensed with. It’s time to put cancer to bed for the night.

IV.                Cancer, a chaotic explosion of cells, yet treated in a linear process, every actor constrained in their own grey-walled silo.

V.                  The healing, quiet horror of a Cancer infusion center. The terrified about-to-be-transformed line up to be processed like so many cans of tuna.

VI.                The “manners” of cancer constrain. Friends look at the tumor on my face, tactfully NOT asking when it will pop. But I can see the question in their eyes.

VII.              Cancer, the common American Experience, coming soon to a household near you. 2-for-1 pricing available.

VIII.            Daily Specials at the Cancer Diner

·         Chemo

·         Radiation

·         Gut support

·         Exercise

·         Steroids

·         Missing body parts

·         Mind/body healing

·         Acupuncture

·         Anti-nausea meds

·         L-glutamine powder

·         Drastic surgery

An all-you-can-eat Buffet.

IX.                15 years ago I wished my life was more vivid.

Cancer granted my wish.

Foolish mortal.

X.                  Cancer…Can we talk about something else now?

XI.                One morning I awoke to crop circles carving out bald spots on my head. The next morning I discovered I’d rubbed off my mustache in me sleep. In a fit of aggravation over the general untidiness of it all, I shave my head. The good news is I only shave weekly now. And I get to wear a fabulous hat!

XII.              The New Normal, a moving target I’m not all that eager to hit. I liked the old normal better.

XIII.            A game of chicken, played by adults, the chemo and my body race down a treacherous path, each trying to force the other to crash and burn.

Lessons Learned from Cancer

·         Go with the flow, you are not in control

·         Learn to dance with Uncertainty

·         It’s your life and time. Decide what to do with it.

·         Life is short, though days after chemo may be long.

·         Be gentle with yourself, ‘cause Cancer is hard work.

·         Accept the love, and the unexpected kindness of strangers. They need to give, and you ne4ed to receive.

·         Life is short, don’t waste it on fools and those who make life toxic.

·         Sitting on the patio, A quiet sunny day with a cooling breeze and no side effects acting up: a blessing.

·         Having Cancer, like being visibly pregnant, triggers the most bizarre responses from friends and strangers.

·         It’s not over ‘till it’s over.

Toward Nightfall, the Cancer Comes

The day is filled with chores – finding health insurance, making doctor appointments, paying hospital bills, ordering meds. A whole day spent on the bureaucracy of medicine. By early sunset I’m beat. Sitting in my recliner, as the room grows dark, watching some B-grade movie, the cancer comes.

It always hurts more in the evenings, creeping in with little twinges and then large jolts of pain, stretching the skin on my face until I think it will pop. Tonight it’s the worst it’s been in months. I debate ‘upgrading’ from ibuprofen to some more powerful, mind-numbing pain killer. I opt instead for another mind numbing movie, and some inhaled “medication” from the local dispensary.

Toward nightfall, the cancer comes, pushing out other thoughts, other feelings. I spent all day on Cancer’s administrivia. I want to be done with it, take a break, find some joy. But it’s evening, I’m exhausted from coping.

And then the cancer comes.

Expectations

Growing up in the public eye, we kids were trained to present a model family. "What will people think?" was a powerful force in managing our behavior, expectations, demeanor. Further, we were always to be in the 99th percentile...academically, of course, but also professionally and even morally.

When I came out in the 70's, there were strong expectations about who I was/should be...from the straight community, but also from the gay community. Neither set of expectations was useful. I learned to build a life regardless, conforming to my own expectations, making ethical, interpersonal and life decisions without benefit of a model or applicable expectations, and letting go of the models of my childhood.

Boy was that good preparation! Now I'm again in uncharted territory with only the crinkled road-maps left by those who've traveled before me. They place no judgement on me. Perhaps I won't judge myself to harshly. After all, cancer doesn't work with percentiles. Everyone is different.

Time

Now that I'm "disabled" I have "free" time. An appalling amount of it is spent on medical necessities, but outside of that, the days get long. I wasn't prepared for this freedom. This is MY time now. Suddenly I have time to do all those things, whatever they were, that I always wanted to do. What were those dreams deferred? What new life do I build with the time I have now? Will I fill it with trivia and chores and "I don't have the energy" and "I'm embarrassed to out in public with side effect X, or Y, or Z?

End times, like beginning times, are delicate things, fragile yet inexorable. It's a cliche, but end times can focus the mind. Or at least I hope they do. I've fulfilled my "mission if life", so maybe now it's time for all that fun I deferred for "more worthy" tasks.

Now time is a gift...
- for fun times
- for people times
- for renewed dreams

I don't have to please anyone else, impress anyone, answer to anyone. I'm no longer on 7x24 call. I'm not leaving responsibilities undone. So, what Do you do with freedom, with time?

Can I pot more, visit friends, finally de-clutter the house, check out new cuisines, learn Californian gardening, learn to sail on the ocean, lie in that hammock that's been reproaching me from its stand?

What can I do with this found time?

Let's find out.

Before & After

Before cancer, I was worried about living too long...we're a very long lived bunch, so I needed to have resources to last to age 95. And, since I expected to live long past 65, dreams were deferred, held in abeyance, kept in my hope chest awaiting those long years of retirement.

After cancer, my future is one day, one treatment cycle, long. Never mind what I'll do in my 90's, what can I manage to do this hour, day, or week? But I no longer worry about outliving my savings.

Before cancer, I worked long hours doing whatever needed doing, confident I could power through any momentary tiredness.

After cancer, I conserve energy,  hoping to get an entire gate painted in one session, knowing I'll need a nap immediately after.

Before cancer, life was about doing things, going places, outward focused. After cancer life is inward focused, about being, experiencing the moment with more intensity, experiencing relationships, reconnecting with family, soaking up the love of friends.

Before and after, life is about choices...of people. actions, experiences.  But after cancer, the choices are scarier, more exciting because more critical, and more intensely, authentically mine.

Before cancer, I had responsibilities.

After cancer, I'm free.

The Wrought Iron Fence

After my sophomore year of college, I had a job doing maintenance on a huge 19^th Century mansion in the University of Chicago area. It is now, incidentally, the Chicago home of the Obama’s. There was a wrought iron fence surrounding the double lot, perhaps 1500 feet of fence. My job included painting that fence. Maintenance had been deferred so long that the paint wasn’t just flaking, it was bubbling. And some places it looked just fine.

But if you were to poke that fence, you finger could go right through the metal. The corrosion was hidden, invisible under those many layers of paint, silently destroying the fence.

So, too, this carcinoma, eating away inside, silent but persistent. Every once in a while, the corrosion breaks out, pushing up a bible and breaking into the light.

Scraping that corrosion out only goes so far. Burning it is only a temporary fix, for it is deep in the substance of the fence. Slowly, individual bars corrode through, bend, and then suddenly, with no more than a touch, crumble away and leave a gap where there used to be a protective boundary, leaving a hole in the fabric.

Is than an opening? An opportunity? An entrance into some unguessed reality?

Or is it just loss. Maybe which of those is my call.

Fear

My confirmation verse: "Yeah though I walk through the valley of Death I shall fear no evil, for Thou art with me."  A verse I picked at age 12, now applied 50 years later, isn't quite as bright and shiny as when I chose it.

But I am afraid. Fear goads to action, or paralyzes into inaction; fear is rational and irrational. That kind of dichotomy, for me, points to one of life's "Mysteries", those powerful truths beyond the logic of bright sunny days. Mysteries shrouded in the murkier parts of the spirit, but still a critical part of being alive.

Fear goads and paralyzes. I'd opt for the goad, but accept a temporary paralysis, because fear is a process, a movable feast, a waystation on the journey.

I embrace my frightened ten year old, but I'm not ten any more. I have mental and emotional resources now I didn't have then.

Fear is a waystation on the road to hope.

Getting Diagnosed

I was at work. My company had been bought out 2 weeks before, and my job was at risk. Further, we were swamped at work. My cell rang, and, seeing it was my ENT, I left the conference room to find out my biopsy results. I was hoping that ll those "hmms" and "uh oh" noises he made during the exam were wrong. I waqs already exhausted from the workload and scared for my job, and didn't need an additional problems.

The doctor told me the biopsy was positive, but the cancer was small. Probably surgery and radiation would be prescribed. he'd schedule me with an oncologist/surgeon. It felt like another body blow...one of many in the last 10 years. I kept soldiering on, but how long could I do this?

I went back to the conference room, packed away my panic, and resumed leading the meeting. I have no idea what the meeting was about.

Another major life change was about to hit me, will he nill he.

Catching up on life events

Wow! The last time I posted was after radiation. A lot has happened since:

• In 2011 I switched jobs, to the best job I'd had in years
• In 2012, I started looking for a surgeon who could fix the scar tissue in my mouth. The scar tissue only allowed me to open my mouth a little, not enough to eat a grape unless I cut it in half.
• In 2013 I had surgery on both sides of the jaw, and also had the scar tissue removed. Months of painful physical therapy followed.
• In preparation for the surgery, since I'd had radiation, I took 30 dives in a hyperbaric chamber, to promote the growth of blood vessels in the radiated area. Unfortunately, that  process seems to have permanently damaged my eyes.
• Unfortunately, the surgery site never quite healed...a new cancer spot formed.
• Two more surgeries removed cancer, and also the teeth and bone of my right jaw.
• The cancer came back. My sugeon suggested removing my jaw and the floor of my mouth. But he also said the entire field was active with cancer. 
• Further, it looks like this cancer is caused by environmental factors...pesticides, chemicals, etc. in the food. So he recommended I move to a plant-based, no animal product diet like macrobiotics or a vegan diet.
• In May of 2014, I switched cancer doctors, and the new people gave me 12-18 months to live, and said there was no use operating any more, and no way to do more radiation.  So, chemo.
• I had chemo all summer of 2014, but it started to fail after Labor Day. Now we are looking at tougher chemo options. And I'm looking at quality of life versus length of life trade offs.

I survived radiation

My last radiation treatment was November 16. A month later, most of the burns are healed and my energy is coming back. I still don't have all my taste senses back, but they're coming. But what a brutal process. 30 treatments, strapped down to a table with a face/shoulder mask that immobilizes you. Add to this the fact that the oral surgery process cranked my neck back and triggered the two ruptured disks there, and you have a recipe for a lot of discomfort.

But I'm past it now and looking forward to being able to eat Christmas dinner. No more Ensure. The burns in my mouth are mostly healed. Now the challenge is to overcome the trismus...the radiation caused scar tissue at the jaw to contract so much I can only open my mouth 10 mm. That's barely enough to allow small bits of food in. So now I get physical therapy to stretch that scar tissue enough to let me open my mouth.

During my treatments, one after another of my siblings and friends took care of me. Sibs each came for about a week and did cooking and cleaning. The cooking was a pretty thankless task for most of this, as the type and amount of food I could force in was decreasing each day through Thanksgiving. The radiation not only stops the taste buds and saliva glands from working, it also burns the roof of the mouth, the inside of the cheeks and gums, and leaves big sores on the tongue. So it was a major struggle to keep eating. I have lost nearly 40 pounds in the process.

Now that it's over, I'm hoping to keep that weight off and lose a little more. But that's for after Christmas. I'm just going to enjoy eating whatever I can eat until the new year.