Grateful

Back when I was married, we used to have a Thanksgiving ritual. Before we ate, we'd go around the table and each person would say what he or she was grateful for.

So here goes: 

I'm grateful to J who has met a lot of challenges these last two months.

I'm grateful to all the friends who help me get to the treatments.

I'm grateful to all the friends who keep in touch-their kindness makes me want to cry sometimes.

I'm grateful that my kid is relatively unscarred by all this.
I'm grateful for my dog.

I'm grateful that I avoided the feeding tube.

I'm grateful that you don't have cancer.

Returning Diminished

Until my diagnosis, I was a minor-league gym rat. Not a serious body-builder, mind you, but a ten to twelve times a month Pump addict. Here’s how it went: after a half hour or so of biking or rowing, I’d find my weights and my bench. I’d remember a posture and in a few seconds, I’d close out the world. My attention, no my whole consciousness sat in a loose wrap around the muscles that were about to work. Then I’d let my breath out and start the first movement. My mind would tighten around the muscle; everything else would fade away.
I’d let the weight go back to the beginning. That’s one repetition (a rep, in the lingo). Without pausing, I’d start the second rep and let my mind melt into the muscle. By the sixth or eighth or tenth rep, I’d be lost in the exhaustion of the muscle, half-dissolving into the feeling of total depletion. That’s one set of reps.
Most exercises got three to five sets with a pause between sets to allow the muscle to recover. At the end of the last rep of the last set, there would be no me and no muscle, just the place where we met and the explosion of the effort. When I stopped, what I could feel was the Pump, a surging, singing rush into the muscles. After six or seven different exercises, my whole body would be ringing: Pumped.
•
My last real workout was in mid-September; let’s call it nine weeks ago. I stopped because I felt weak and tired and it was just easier to stop. Today I went back for the second time. I did about twelve minutes on a stationary bike and then went to the bench press. That’s an exercise where you lie flat and use the big muscles of the chest and arms to push a weight up and lower it slowly. I reduced the amount of weight that I used to use by half, I began the movement and all I could feel was something outside of the muscle straining to lift, struggling with the very idea of push. I stopped and reduced the amount of weight. Less strain this time but the same artificial feeling of watching some guy push weight around. Needless to say, no Pump.

I’m figuring that it’s a practice effect-that there’s something that my body forgot and that it needs to be reminded gently and with good humor. I’ll be going back tomorrow-stay tuned.

Ten Days Later

The end of radiation and chemotherapy seem like milestones. No more daily trips, no more reflections of your diminishing self on politely polished surfaces. Unfortunately, it's not much of a turning point in the way you feel. No, in the shimmering 'now' in which this all takes place, ten days after radiation has you feeling a little bit worse. You're weaker and stupider too. Information makes its way in to your center reluctantly as if it knew it was going to be dealt with badly. Conversations aren't finished, connections aren't made and ideas-if you have them at all-just sort of flop around and die like bugs that emerge too soon in spring.
But this ain't spring. It's mid-November in Mt. Airy, cold and dim. My only encouragements come from my friends, my agent and guardian angel. JR has briskly decided that a manuscript of mine is worth her talents and needs just a nip and a tuck in the style department. I'm don't quite have the wit to do the work, but I'm enjoying her assigned reading and I think that I'm revived enough now to know what style means.
So maybe this is the bottom. Maybe today's the worst, stay tuned.

Radiation Day #35-Break My Bell

There's a bell mounted on a wooden plaque in the radiation treatment area. The attached inscription suggests that you should ring the bell when your treatment's done. The bell is the common and essential musical instrument in the Tibetan Buddhism rituals, and if you ever want to make a JuBu feel right at home, just bring out the bell and give her a ring. The hollow of the bell symbolises the fact that wisdom is not separated from emptiness.
In Buddhist rituals, the bell is tied to the dorje or clapper. The bell represents wisdom, the female principle, and the dorje represents the compassion or activity, the masculine principle. the sound of the bell is taken to be the speech of the Buddha.
You can imagine my attraction to this device, even allowing for the fact that this plaque was probably designed to thank "Buck" Bulkholster for his 22 years of service to Lodge #6. and intended to be sold in the trophy-while-u-wait section of your local discount store.  Yup, I'd been thinking about that bell a lot. This was the place where my spiritual and active selves would get together- the place where cancer could collapse and vanish. Yowsa man, there's a new life in the sound.
So I grab the bell somehow already hearing the one perfect note. I feel the tension in my pecs  and deltoids, a wiggle in my forearm, a squeeze of fingers on rope and a perfect cancer note as I slam the male, active principle into the receptive shell and I break the goddamn bell. Pieces go flying all over the wall-to-wall. ( It's the clapper that broke, you know. It's always the clapper's fault. I'm told that in Tibet there are women who make a nice living describing various sorts of dorje failure.)
The bell rang, of course and the sound is perfect and there are some great little clanks and dinks as the small crowd scurries around picking up pieces of fugitive bings and  fragments of runaway bongs. And everybody shakes my hand and nobody hands me a bill for a bell, and yes I can still hear it ringing.
•

Hospitalized

It's one hell of a word.
We understand it as referring to 'beginning a stay in a  hospital', but it just as easily carries the seeds of 'turning into a hospital-compatible creature' and is on a par with 'winterized' and 'customized'. And sure enough, a few days in a room with motorized beds and you start to fit in to the landscape.
After four days here, I'm getting used to carrying around the pole that supports my IV, I offer my arm up meekly for the cuff or puncture of the moment. I already have a 'port' that gives them instant access to a vein and it seems like all I need now is the feeding tube and custom-made wheelchair.
I got released on the fifth day, all hydrated and shiny and fortunately not thoroughly hospitalized.

•   •   •

They're letting me go because there are no clots to deal with. The docs decide that its just a case of pnumonia and so they've prescribed an anti-biotic. The game has definietly been postponed however,
and now we'll get to learn the rules about starting up again.

Pulmonary Embolism

It's not a school of medeival theology, it's a big fat blood blockage that grows in your lung. People with cancer who sit on their malignant butts often develop clots in the legs that migrate to the lung. That's what they're worried about and that's what lands me on the disabled list for the radio-therapy team. If it turns out that I have clots in lungs or legs then we have a whole new set of problems.

SHIT! they cancelled my radiation.

No radiation today. in order to help my poor sagging body get its white blood cell count back up, they cancelled today's radiation. They may even shave a bit of the dose off the last chemo packet. Why would I be upset about missing out on a zap? Well, they just tack another day on at the end.

Share a little cancer with Mike

Nothing happens in a vacuum, and the news story that’s providing the context for my little adventure is the accounting of the cancer of Michael Douglas, the actor. Like me, Michael has head and neck cancer-Stage 4 and, according to the stories, he— like me— has an 80% chance of surviving it.
His story and mine have some other parallels. We’re the same age, same gender, same ethnicity, we both have adoring and beautiful life partners, and we both seem to have enjoyed a pretty good time so far.
Sure, I missed out on the fame, fortune and Hollywood part. And (poor Mike) he probably never crossed the ocean in a sailboat, taught culinary school in Italy or saw the Dodgers play at Ebbets Field. Six o’ one, I say— no reason for him to feel jealous. We’re both getting great care and neither of us is entitled to rail against cruel fate.
One other thing we have in common: Both of us trooped in and out of doctors’ offices with a set of symptoms for a long time before anybody said, “Hey, that’s cancer!”
I’ll bet Mike had the earaches and the sore throats. Maybe he even found himself spitting up bits of blood from time to time. Chances are that someone snaked a tube down his nose too and looked around and didn’t see the cancer that was growing there. Didn’t see it until it became a dome-light flashing Stage 4 blocking traffic in the middle of his life.
Faulty diagnosis
So, here are some puzzling things about this whole business, some questions that I think Mike and I might both want to get answered:
• What makes this cancer so hard to see? Is there anything Mike or I could have done? Is there some chance that the doctors who missed this diagnosis could give some thought to what went wrong? What can all of us do now to help make this mistake less likely for other people?
• That 80% survival rate is important. It's also a tell-tale that suggests that both of us have cancers that started with a human papilloma virus infection— a sexually transmitted condition. (Regular squamous cell cancer of the head and neck has a lower survival rate).
HPV by itself doesn’t necessarily lead to cancer. In most people it’s harmless: The body fights off the infection, and the virus becomes inactive. Certain HPV strains lead to warts— annoying but not malignant. Other HPV strains are deemed “high-risk” because they occasionally develop into a persistent infection that can progress to cervical cancer in women, and head and neck cancer in men.
It turns out that HPV is one of the few cancers that can be prevented with a vaccine. Right: a vaccine. Like the ones for mumps and chicken pox.
Ask the doctor
Should Mike and I make a big deal out of this? Should we use our star-power to tell the world that there’s a cancer that’s preventable with a vaccine? That we got it, but you don’t have to? Should we mention that these HPV cancers could be stamped out in a generation?
Maybe Mike and I should take this little moment to suggest that anyone with children ask their doctor about Cervarix and Gardasil, the two vaccines that are proven to prevent HPV when they’re given before a person becomes sexually active. We could do a commercial together (although I might have to coach Michael how to say his lines).
• One other thing: if each of us has an 80% chance of making it, then there’s a 64% chance that we’ll both make it. When we do Mike, I’ll buy you a drink.
In the interest of full disclosure: Although the opinions expressed and faulty thinking promulgated here are entirely the author’s, Our Lady of the Sick Co-incidence has fixed it so that the author has a close personal relative employed by a major vaccine manufacturer.♦

Hospitalized-days 29-30

Two embarrassed nurses are standing beside my bed. There's something they want to ask, but they don't seem able to do it. Finally Charlotte, spits it out. "Is that" she says, pointing with her pen to a spot somewhere over my head "natural hair loss? or is that chemo-?" I assure her that it's the handsome kind of hair loss, purely natural, highly sought-after, the kind to which she can only aspire.
In fact, I'm about to tell her how my father's family was worried that too many of my mom's brothers had retained their cranial fuzz and there was a possibility that our beautiful baldness might be compromised in the next generation, but good fortune prevailed and oh by the way, where was my pate wax?
But enough about me.

*   *   *

The reason this entry starts with nurses is that I'm back in the hospital. Fevers, pain, vanishing white blood cells and bingo! here I am. They're trying to figure out the bug responsible so they can match the anti-biotic to the biote. All in all, not good news. I attend my daily session of chemo, It's number 30, five to go.
It turns out that chemo depresses your white blood cell production and since white blood cells are the main vehicle for fighting infection, your chances of picking up an infection are increased. The signs of an infection are also curbed by your therapies so fever is really the only signal that something's wrong. Be grateful they caught it, they say.
All right, I'll be grateful.

The worse news is that of all the possible nurse costumes that might have come up for Hallowe'en, this one on the left is the best I could do.