Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
Sorting the Fragments
by Paul J. Sampson
Some events in our lives are explosions, so dramatically disruptive that they leave us sorting through shrapnel. I've just gone through one, am still going through its aftermath, and apparently will always have to live with some of the losses it inflicted.
Those who read the last of my Eclectica columns will have guessed that I mean undergoing cancer surgery and radiation. I lost my larynx (and with it the ability to speak in a normal voice). At less than three months out from surgery, and indeed less than four months after diagnosis, I cannot even think very coherently about this event, but I can begin to inventory the fragments, and herewith are some of them:
You've got the wrong man, copper:
When the doctor gave me the diagnosis, my first reaction was: I have been falsely accused. I had a bulletproof alibi, more than one, in fact: "I quit smoking 25 years ago, I had my last drink 14 years ago. I take my vitamins. I use sunscreen!"
But my body was guilty after all of this cellular iniquity, this literal sin of the flesh. I had been running around with a loose genetic shoelace, and at long last it had tripped me.
In the still of the night:
As I lay in the hospital, unsleeping during the quietest parts of the night, my mind caught and picked at this line: "In cheap hotels where old men cough all night." I couldn't remember if it's a quotation and if so from whom. T. S. Eliot? Raymond Carver? Fiddle with the context and it could be either. It seemed I'd known it all my life. Did I write it? I still can't remember. Write to me if you can place it.
In any case, this was no cheap hotel, and I was the only one coughing. And I'm not that old.
If you can't laugh at death, what can you laugh at?
Since the diagnosis, I've managed to shock a few people by joking about having cancer. This shocks me, somehow. What is the point of laughter if you can't laugh when you need it most?
Not that I've been much of a comedy star, but hey, you can make a few allowances for the circumstances. Sample material: My wife revealed that we were out of our favorite kind of chocolate. My response: "Great! First cancer, now this!"
Good old days:
We often hear complaints about the impersonal nature of modern medical care, and along with these go love songs to the days of the wise, caring family doctor. I'm not so sure.
I was born in 1938. I grew up in the last days of the "physician and surgeon" general practitioner. I even remember doctors making house calls, though they were a thing of the past by the time I started school. I do remember standing on a table in the dining room, age three or so, getting a shot from a truly beastly fellow named Doctor Redmond, who didn't like children and who showed it by gripping my arm hard enough to bruise it. My parents, no fools, spotted this and switched doctors soon thereafter.
But my parents and their contemporaries knew of, and some of them underwent, emergency kitchen-table surgeries. I remember vivid, chilling descriptions of these, always (it seems in memory) featuring florid infections so that, when the sawbones made his first incision, "the pus shot up to the ceiling!" That line, in fact, was a sure laugh-getter in our family, used behind the back of some relative who told one medical horror story too many.
Where does it hurt?
The worst moments? Modern hospitals make sure that you are doped to the gills so sheer pain is seldom the most devastating effect of major surgery. My worst, most overwhelming bad moments were any of a dozen when as I lay, helpless and frightened, any of the dozens of nurses, technicians, therapists, orderlies, or God knows who else in various colored scrubs helped me kindly, sweetly, promptly, lovingly. Among them, I looked up into faces of every race, all ages, at least two genders, every faith or none. At moments, undone with helpless gratitude, I would weep: "They are so good to me," I wrote on my slate. I could scarcely bear the weight of it. They were so good to all who lay before them, helpless and afraid. How did they stand up to it themselves, this goodness?
And at their sides, through all their calm voices, all day and night, my incomparable wife, the extra nurse on every shift: the recurrent theme of her words, to me and to them, my coach, comforter, advocate, interpreter.
I was never alone. I remember lying there remembering the scene in the movie version of "Under the Volcano," in the chapel of the Virgin "for those who have nobody with," as the man explains in his sweetly odd English. Oh God, to have nobody with. Now that would be torment indeed.
In fact, as I progressed through treatment cycles, we noticed that very few patients had no family member or friend with them. This was easy to observe in the radiation treatment waiting room, where all the patients and family got pretty talkative and friendly with one another as we went through weeks of treatment. The few that were alone seemed visibly sicker, brought lower by the same things that brought all of us down. Marti commented on this to one of the residents, who shook his head sadly. Yes, he said, people seem to do worse if they go through this alone.
"You're not sick, you just have cancer"
The optimism, cheerfulness and candor of the professionals at M. D. Anderson Cancer Center was a constant well of needed energy. These are truthful people. They don't promise cures--only quacks promise cures--but they made it clear that they were working with every intention and expectation of a successful outcome. After all, Anderson runs a fine hospice, just down the street from the hospital. They would not hesitate to recommend it if that's what they believed I needed. Some day I may, but not from this illness.
Nobody at Anderson pussyfoots around the C-word. From the many-feet high sign on the building to the logo on every pillowcase, they tell you: M.D. Anderson Cancer Center.
It's pretty daunting to go through that door for the first time, but it wears off quickly. From the first moment in the busy lobby you realize that at least half the people you see, unless they are clearly medical staff, are cancer patients, and the other half of the civilians are the patients' wives or husbands, parents or children; very few patients are there alone.
A good thing, too. Even with the high level of support by the staff, the patient finally has to leave the day's last appointment and think about the meaning of the words that have washed over him all day. You may not be sick, as they insist, but you do have cancer, and that is a hard fact to set aside at dinnertime. I do not recommend dining alone on such days.
The bedside cluelessness of surgeons (and other clinical observations)
Well, not all of them, but enough to reinforce the stereotype. One of the residents who visited me on his morning rounds two days after surgery seemed unable to grasp the concept that I could not stand up yet, let alone walk around the nurses' station several times. Nevertheless, their skill is incomparable. My surgery was very complex, involving more than one surgical specialty and requiring thirteen and a half hours of operating time. Beforehand, while explaining the risks to me, one resident told me: "If there are problems, for instance if the tumor is so involved with your carotid artery or jugular vein that the vessel gets nicked, then you want the fastest pair of hands in town in there--and that's who you've got."
Dramatic as the operation was, the parts of my hospital stay that I remember involved not the surgical superstars but the legions of people in scrubs who took hour-to-hour care of me. They reminded me of what I already knew: After the drama of surgery, when the patient is back in bed, doctors diagnose, devise, and order treatments; nurses, therapists and technicians practice medicine.
I received very orthodox treatment from one of the Motherhouses of therapeutic orthodoxy, the University of Texas M. D. Anderson Cancer Center in Houston. I did this because I am medically sophisticated, because I have good reason to trust the expertise and good faith of the medical profession, and because I really and truly hate and fear quacks.
A few years ago, I wrote this little parody of the grotesque language of genuine quackery, which is more common than you might think. We live in a paradoxical age, in love with the products of technology on the one hand and superstitiously afraid of our bodies on the other, and some of us are just as susceptible as any medieval peasant to the claims of the bogus healer.
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Well, you get the idea. I had a lot of fun with good old Repto, and I suspect I will again. But I shudder to realize how many people who get the same news I got from my doctor head for the nearest Repto dealer. Some of these are well educated, affluent people with none of the social stigmata of the helpless victim of the snake-oil peddler. These people make me angry, almost as angry as do the quacks themselves. There simply is no excuse for a retreat from rationality into this fog of deliberate ignorance.
For those who don't know, here are some hallmarks of quackery. Run screaming if you encounter them:
· Guarantee of cure (usually backed by testimonials, never by comparative studies)
· Claim of exclusive and esoteric knowledge ("What your doctor doesn't know!)
· Claim that orthodox medicine does not want to cure you ("What your doctor doesn't want you to know!" This bizarre assertion is very frequent.)
· Claim of "natural" cures (Yes, yes, there are healing herbs. They don't cure cancer.)
· Claim of exclusive skill by the practitioner (Doctors have pretty big egos, but we're talking megalomania here. If Doctor Wonderful says only he can fix you up, try down the street.)
Anyway, I chose what I believe to be rational therapy. I chose it from among other well-reasoned therapeutic strategies (for instance, chemotherapy plus radiation without surgery) for technical reasons, not interesting enough to spend more time on here.
But in the interest of fairness, I will note that we added one non-traditional modality to my regimen. I went through 34 sessions of radiation, enough to microwave a brace of moose and the guy who shot them. The therapists promised me a high degree of misery, including a sore mouth and throat. My incomparable wife, a highly trained nurse, fed me several times a day on Smoothies of her own devising, and I am here to offer an unsolicited testimonial: Marti's Smoothies prevent the worst ravages of radiation-induced sore mouth and throat. I will now slide away from the keyboard and ask her to append the recipe, which we offer freely to all who have to undergo this unpleasant therapy:
Marti's Radiation Smoothie
In a blender, mix:
1 cup whipping cream
1 ½-2 cups yoghurt (any kind okay, as long as it is NOT low-fat)
1/5-1/4 package tofu
globs of honey
large glob of molasses
anything chocolate: syrup, cocoa, Ovaltine--you get the idea
2-3 packs Carnation instant breakfast
loads of ice cream: I used chocolate and strawberry
any other fruit you want to use, avoiding citrus (the acid is hard on the radiated tissues)
Feel free to vary amounts and ingredients, BUT do not skimp on the yoghurt and tofu. Also remember this recipe is for weight maintenance or gain
That's her recipe, folks. And for the record, during a treatment regimen in which most patients lose so much weight that they have to be tube-fed, I gained weight drinking these delightful concoctions. I still drink them, though we have cut back on the fat content for the sake of my arteries. No need to cure cancer only to succumb to arteriosclerosis, right?
"Copyright 2000 Paul J. Sampson.
Reprinted by permission from Eclectica Magazine (www.eclectica.org)."
The following is an introduction to a booklet in pdf format that will be a free download from the WebWhispers.org site. It will be available soon and will contain all of the articles written for HeadLines by Shari. Additional articles will be added later. It will be a collection prepared by Len Librizzi.
MASSAGE AND STRETCHING
As a holistic healthcare practitioner for nearly eighteen years, I have a reputation for preaching, kind of. I have seen hundreds of clients with every variety of physical situations you can imagine. Each of them has left my office with instructions on self massage and stretching.
It has been a pleasure to write this series of articles that anyone can use, but is specifically designed for laryngectomees. There are inherent difficulties that are apparent when considering treatment and post-operative care for someone who has had a surgical procedure. Those who have had invasive procedures on the front of their necks are indeed unique.
Not only are there the obvious scars involved, the underlying tissues and their changes, but the changes in lifestyle, use of the Servox and dominant new “speaking hand” and the arm attached to it, but also the after effects of radiation, the change in diet, and a lifelong awareness of the physical, emotional and spiritual being as a cancer survivor.
The Right Touch and The Right Stretch series address the need for self-care for those who are ready to take charge of their wellness and get in touch with a sense of feeling better and becoming more aware and honest with their bodies.
The series are user-friendly self-care guides that use handy tools and incorporate breath and yoga postures to bring the body as a whole into a more flexible and cared-for space. When we address our core needs for touch, it affects the rest of our life positively. We are more clear-headed when our body is not in discomfort.
A note on scar tissue and surgery is needed to understand the need for continuous stretching. Scar tissue is not organized the same as normal tissue. You must understand that the body has a cellular organization that allows for flexibility and ease of motion. Scar tissue seeks to stabilize, and does not consider flexibility when forming. The use of massage and stretches can make scar tissue more flexible. More flexible=more movement=less binding=more freedom and so on.
A note on your general health care is necessary. Understand that having a variety of partners in your wellness program will allow you new found freedom in your overall well-being. Your physician, maybe a physical therapist, massage therapist, yoga instructor or exercise teacher-all of us are available resources for improving the quality of your life.
Someone once shared with me a lovely poem that I remember always:
Do remember to forget
Anger, worry and regret.
Live while you have life to live.
Love while you have love to give.
Thanks for allowing me to be a partner in your wellness program. Feel free to email me at: firstname.lastname@example.org if you have questions or comments regarding this series of articles.
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