Written for the Daily Freeman:
Blaise was diagnosed with colon cancer on Oct. 1, 2008. He began writing a weekly column for the Freeman shortly thereafter and continued until a final installment on May 24.
Cancer diagnosis doesn't impart wisdom, but it does focus the mind
Friday, October 19, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
As I write this, cancer-fighting chemotherapy drugs are flowing into my bloodstream and that makes me feel better than I have in more than a month.
More than two weeks ago, after a bit of fumbling with an alternate diagnosis and some false hopes, doctors confirmed that I have colon cancer. Once they had an actual gobbet of flesh taken from me during a colonoscopy, the denials and diminishments fell away.
Every day since as I've moved from doctor to doctor to emergency room to CT scan device, I've been hungering to fight back. Not that I've actually been hungry.
The cancer - as it was growing and expanding beyond my colon - was both dampening my appetite and grabbing up all the nutrients it could for its own growth. My wife, who never understood that in my natural state I have cheekbones and a taut abdomen, was doing all she could to sneak meat and potatoes, sautéed vegetables and many kinds of cheese, ice cream and sugar soda into me.
We actually fought over my inability to clean my plate.
Now that I hear the thrumming of the chemotherapy pump and can see the clear medicine entering my body via the "port" that was recently installed in my chest - I finally feel like the pity party can be put on pause. The port is a device implanted just below the skin that will allow medicine to flow more directly into my bloodstream.
Telling family of my diagnosis was hard, and the dozens or thousands of miles of distance did not lessen the impact. Sharing the news with people who are closer was tougher in a different way. Almost none of them laughed at my best cancer jokes, or my challenges that they shave their heads in solidarity with what I wrongly assumed would be a hairless existence.
So rather than meet with clusters of co-workers here and there, I took a coward's way out and wrote them a note in an inter-office newsletter and fled the office early before many of them could read it two Fridays ago. I also asked them not to pigeonhole me with questions, especially early on. I knew for those really close to me, this would be very emotional and I didn't want to find myself in some kind of cluster-hug, especially as I'd likely be the one who'd stand out as the tallest one in the group with the reddest face.
I consider most everyone at the Freeman to be a friend. It has been a challenge to acknowledge their concern without accepting forced prayer sessions or information about healing modalities that make me squirm. I once had a co-worker who thought she could heal a cavity in one of her teeth with an herbal remedy. I wriggled away from her trying to hide my wide-eyes.
Most colleagues honored my wishes - some consciously and others because they don't usually read inter-office newsletters.
This being a newsroom, a few found out early and preemptively disregarded my wishes and gave me hugs before the word was officially out.
Only one person physically hurt me when she got the news. I've since told her that only her (semi-private) traditional hugs are acceptable, as my abdomen is a bit tender from the cancer roiling around in there. Her first side-action cross-belly hug was so powerful it left me breathless for a moment. She has since reverted to the full-frontal, head-to-shoulder technique that I prefer.
As I consider Kingston - my home for more than 20 years - to be the center of my world of friends, writing this makes me a little shaky as well, but I have faith.
This area has some of the most creative and screwed up people in the world and I'm sure they'll come to laugh with me at some of the inanity that emerges when people are confronted with cancer and mortality issues.
This series will run each Sunday in the Life section. And for the dour, let me be clear, this is the first of a 265-part weekly series.
My boss had the wisdom to accept this column without a standing headline - perhaps because I initially suggested a rude title telling cancer to bleep itself. I'm also considering getting a tattoo with a similar sentiment, but I'm wary that when I can get back to swimming at the YMCA in Kingston, I'll have to use magic marker to muddle the first letter of the tattoo so it will read "BUCK CANCER." I generally avoid collateral damage to children and defensive parents when possible.
Among those I plan to interview while researching this series is a local ice-cream maven and a member of Breast Cancer Options who I usually regard as a friend.
Breast Cancer Options gives those with breast cancer diagnoses comfort, perspective and loads of information patients might not receive otherwise.
I'm still a little upset with the ice-cream Options lady because when I last showed her one of my tattoos, she literally applied her spittle to my body art. Licking her finger and scrubbing it on my "Rebecca Forever" tattoo she "outed" me as a poseur. Sure, I might goof on a tattoo fest, but get an actual tattoo? Too wimpy was her judgement.
This space will give me excuses to drive hard at difficult questions of everyone I encounter as I ride this adventure - and I'm looking forward to that. While I assure you a cancer diagnosis doesn't impart wisdom, it does focus the mind. I promise to explore my new world of white jackets and stethoscopes, helpful nurses and mired bureaucrats with the measured cynicism and twisted humor that has been part of my work my entire adult life.
Blaise Schweitzer is a Freeman reporter. This series is scheduled to run Sundays in the Life section.
Weight gain a first victory over cancer
Tuesday, October 26, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
Fighting cancer for me these days involves gallons of orange juice, warm chocolate pudding with whipped cream, homemade heroes, potato salad, steak, fresh-juiced beets and carrots, sautéed leafy greens, grilled cheese sandwiches with lots of butter, buttered muffins, bananas, apples, pizza with buffalo mozzarella and fresh herbs, guava juice, rosti potatoes with olive oil and sour cream, fruit pie, Jane's Killer Chocolate Ice Cream and stacks of ice-cream sandwiches.
When I was diagnosed with colon cancer more than a month ago, I'd already lost some 10 pounds to the spreading disease. A trip to Memorial Sloan-Kettering Cancer Center in New York City garnered a pile of information for me to absorb and apply, including a goal to "maintain" my weight.
After a few depressing weeks of continued, gradual weight loss, I was starting to feel like the anti-American. Every other American around me seems more than capable of plumping up without effort. My cheekbones just seem to get more aggressive despite my first attempts at mass feedings.
So I've grown competitive.
I eat midnight snacks when I'm not hungry. I down desserts even when they make me queasy. Bananas are my friends.
Half sandwich in the back of the fridge? You're going down!
Although I've not yet strapped on a bucket of fried chicken, as one girth consultant at the Freeman suggested, I have had big slabs of crispy-fried fish with generous dollops of tartar sauce.
I'd thank Alton Brown, but all that uber-Food TV-geek did, really, was adapt a fried-fish recipe and post it online. My wife painstakingly recreated the dish, which probably helped turn my skinny cancer-boy tide, a few days ago.
After getting down to a scary 177 pounds this week, my weight finally climbed again to more than 182.
This is my first quantifiable victory over cancer.
The encouragement I received from Benedictine Hospital's oncology support program last week helped with attitude, if not fattening tips.
There, I met women in the metastatic cancer support group who laughed at my bad jokes and - after making scary sounds about my sugar consumption - immediately suspended judgment after hearing my weight loss had rattled me.
I don't remember if I told them I am still technically overweight by the standards set by my college track team. Coach Roy Griak of the Minnesota Gophers always used to say us distance runners should be nothing but skin, bones and something that rhymes with checker but starts with beginning of the word pepper.
But then, this is a different kind of race, as I try to bolster my immune system and rebound-abilities.
Cross-country and track jocks seldom have cheerleaders around much, so this is the first time I feel like I have a (bizarre) community of pep-squad supporters. I've been getting cards in the mail that quote Lance Armstrong (a testicular cancer survivor and bike racer.) An electrician friend offered to fix a problem at our house, making his third overpayment of a perceived debt incurred during a refrigerator move some 20 years ago.
And a long-time ally who has always made fun of my inept housecleaning skills claimed she'd be more than happy to help "pimp" my house for a Thanksgiving visit by family from Minnesota. Cleaning is her day job, so it feels odd to impose on her paycheck, but she did her best to set my mind at ease.
After my extended family heard chemo makes me sensitive to the cold, they sent me some of the warmest shirts and ugliest hats ever worn by man. I'll be the guy walking dogs in my neighborhood, wearing one of those ear-flap Walter Matthau hats from "Grumpy Old Men."
Laughter has been a balm for me, but I've found most people squirm around jokes about mortality, which has made me feel a little impotent. I've heard a lot of dead air over the telephone this last month.
I had figured that members of Benedictine's cancer support group might be more sympathetic - and laughter prone - than the average collection of humanity. So true, as I was happy to get solid doses of both sympathy and giggles during my first meeting with them last week.
They didn't blink when I told them I dropped an F-bomb during a recent uncomfortable emergency room visit, and were only concerned with making clear whose side they were on.
Mine!
Some support group leaders discourage the naming of problem doctors during "group," but they usually acknowledge that after any meeting the participants are free to mingle among themselves and dish dirt. Still, I restrained myself this time.
The group members also answered some of my basic newbie questions and were so generous with their time I was wary I'd stolen attention from others.
Still, there is so much to learn.
Do those who use juicers have to end up with bushy eyebrows like that white-haired salesman on TV? As I already have body-hair issues, this could get awkward.
How can men and women with cancers at stage two, three and four respond to those who commiserate by talking about minor injuries or nasty colds?
What is the appropriate answer to give when people ask "but it hasn't spread, has it?"
This is especially difficult when it is clear they aren't really close friends and they really don't want to know the answer. Really. Although the question generally falls into the "dumb" category, even the most genteel of folk just can't help themselves sometimes.
More on this in a later "You Can't Win!" column highlighting how almost anyone is likely to make gaffes when they stumble across someone who is seriously ill.
Almost anyone can help, however, it just takes some guts and sincerity.
For more information about the Oncology Support Program affiliated with Benedictine Hospital in Kingston, call (845) 339-2071.
An advocate checks a dose, lifts a spirit
Tuesday, November 2, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
In the last five weeks I've dealt with my colon cancer - a cancer that has "left the barn" and is moving around my liver and lungs - I've armed myself with pals capable of being pushy, prickly, assertive, confrontational, difficult, doubting and argumentative.
And loving.
It takes a confident and caring person to question the most basic steps medical professionals take, from triple-checking medicine dosages to posing seemingly extreme hypothetical questions like: "If we had a helicopter and lots of spare fuel, would bi-weekly trips to New York City for chemotherapy treatment be superior to similar treatments in Kingston?"
Such pushy questions do not come naturally to me when my own health is at stake. I was raised in a polite land called Minnesota and - former Gov. Jessie Ventura notwithstanding - that state is so courteous and strange that people greet strangers on the street and (more often than not) even help push cars that become mired in snowdrifts.
But we don't easily seek therapy or ask for help, and are weirdly averse to eating the last slice of pizza in the box because it wouldn't be "nice."
Although I've learned to salt swearwords into my daily life, I still carry some of that residual "niceness" in my DNA. That has gotten in the way of my treatment, on occasion. Like when it never occurred to me to see whether it might be better if all my chemo treatments were administered at Memorial Sloan-Kettering Cancer Center in New York City.
Fortunately, the friend who brought me to the New York consult a month ago, was comfortable asking that question three different ways (minus the helicopter version) earning a boatload of my gratitude.
Each time he asked the question, the slightly gruff doctor repeated the same reassuring answer. As long as my Kingston oncologist follows the regimen laid out by Memorial Sloan-Kettering, he said, there would be no appreciable difference in how my body would respond.
And I'd not have to spend more than four hours in traffic every two weeks, he added.
Although a startling array of generous people have offered to drive me to New York for any treatment or consults, I never posed the question because it seemed wrong to call in such favors more than occasionally.
Now that the question has been asked, I feel better about the care I'm receiving and I've no doubt those positive feelings are beneficial.
Although helicopter rides to New York City could help my attitude too, by giving me some boy-toy thrills, I'd feel bad about the carbon that would tax the world on my behalf.
Easing the burden of chemotherapy is vital, especially because patients may need some convincing to agree to ever-stronger doses of anti-cancer drugs in order to survive. I've downplayed some of the discomfort with friends and family, just as doctors seem to do routinely. There is an idea out there that if those undergoing chemo are told a regimen is relatively easy to tolerate, those cancer patients may make it past some of the body blows by sheer will and the application of upbeat aphorisms.
That only goes so far. Certainly when my head hits the pillow for a "quick nap" that lasts four hours, I know no positive mantras can substitute for sleep.
Just recently, I've employed more than a little Mountain Dew, corn syrup and all, to get me through the day.
The major source of my perkiness this week can be directly attributed to "The Case of the Spousal Advocate Who Countered the Error of the Excessive Decadron Dose." Decadron is an anti-nausea medicine normally given as part of some standard chemotherapy treatments. At the wrong dose, it has been known to cause wracking hiccups like those that laid me low during my initial treatment.
Still, after we'd been twice assured that I'd be switching to a lower dose to prevent hiccup redux almost two weeks ago, I came very close to a sequel. Thank goodness, my wife triple-checked the dose with a single pointed question.
It was awkward at first, but I credit her and the professionals who listened to her with lifting my spirits and my health.
This was a minor mistake in the larger scheme of things. I feel comfortable writing about it here now that I've chatted with my doctor about all the other ways he hopes I'll use this column to help improve the care for cancer patients and others.
My doctor told me that people at the top need to know that - for whatever reason - doctors and other health practitioners working in the trenches sometimes act arrogantly and treat patients with disrespect or a lack of concern that can be hurtful.
I am not a health professional myself, but I'm determined to do no harm, or at least as little as possible. Please note that while I'm probably benefiting from care prescribed in New York and applied in Kingston, that scenario may not work well for others who may need to get all their specialized care in Albany, Boston, New York or elsewhere.
Fortunately, there is good news for those who must make repeated or extended visits to places like Memorial Sloan-Kettering or to other major cancer centers. "My American Cancer Society" just sent me an e-mail about free transport options and free lodging near places like Memorial Sloan-Kettering. Want to learn more? E-mail the Cancer Society's Jennifer Coulombe at Jennifer.Coulombe@Cancer.org, or call (212) 237-3859.
Gasps, gulps, gags and more to come
Friday, November 9, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
Once a cancer diagnosis is confirmed, denial ends and education begins.
Big time.
For me and my colon cancer it has been a scattershot affair with some odd hopes and bad information decanted into my allegedly chemo-addled brain.
The shock of my initial chemotherapy last week was not too awful. I did learn of one of chemo's current curses, the hiccups, some 19 hours into the 27-hour marathon. I awoke at 5:30 a.m. the morning after my first treatment started with gasps so deep I was wary I'd inhale any pills I'd try to take deep into my lungs.
Over time, the spasms quieted enough that I could recognize them as hiccups and not just an endless series of uncontrolled inhalations.
I hadn't been warned of this likelihood, but I understand some docs prefer not to list all the possible side effects of meds for fear their patients will manifest them with hysterical abandon. My effects showed up in my sleep, so I'm certain they were not caused by hypochondria.
Still, the official message on what caused the hiccups changed from the anti-nausea meds I was given, to other theories - and back again. I dearly hope that next week's dose of whatever I'm given can be adjusted to minimize the undignified - and painful - gasps, gulps and gags.
The good people who attended the first family members' cancer support group meeting my wife attended last week warned the remedy may not be easy to find. And as I've always been sensitive to gasps when first drinking cold or carbonated beverages, I sense this won't be an easy "fix."
But, come on guys! Suggesting I wear a dust mask that has been partially blocked by plastic just scares the bejesus out of me. Something about lowering one's blood-oxygen level to diminish a symptom related to breathing-gone-bad does makes sense, but so does a bullet to the head!
There will be more on bejesus in a later column, as I've learned it is easy to offend some with the wariness I feel about being physically drawn into prayer circles against my will.
Be assured I'll accept support I can accept, but as I've witnessed hatred emerge from so many "believers" in my life, it isn't easy for me to join in prayer with just anyone. Even anti-unionism has been camouflaged by claims of God-love in my presence, and that's just sick.
Friends and co-workers have come through like stevedores recently with laughter and heavy lifting. Two gangs provided backyard stacking help with the firewood needed to get me and my family through this winter. One of the sweaty supporters told me a person has to evolve in order to ask for help.
A fear of an unhealthy chill can conspire to make anyone evolve.
That wood should help a more publicly known symptom of one of the current chemo regimes - cold sensitivity. In the coming months I may bore readers with explorations of my inner Minnesotan, enacting dozens of stay-warm tricks.
Also in future columns?
More on meeting generous and wise cancer survivors; encountering fanatics who warn of the evils of sugar; enduring doctors who talk past me as if I'm not in the room; encountering acquaintances who I still must tell my bad news to and words and topics and movies and "Deep Space Nine" episodes to avoid around cancer patients.
I'm considering setting up a hierarchy of preferred cancers, but I'm going to have to meet a lot more cancer fighters to get that act together.
Just this week, I told someone how lucky his buddy with prostate cancer was! Everything is relative, something I expect to learn as I attend a metastatic support group in a few days.
I love these code words. In layman's terms, metastatic means "really, really, scary, scary cancer" (that has moved beyond the cancer's organ of origin.)
After a session or two with the metastatic gang, I expect to remove one "really" and one "scary" and add some more levity.
I've found humor really helps, and more so among those I've encountered who are themselves fighting a disease or getting over the loss of limb or child or canine. There's something about more than one person joined together against a common ill that makes fears not so frightful. It is a concept I know some emergency-room doctors I've recently met should learn.
A cancer survivor friend of mine has begun talking with me about being forgiving of foolishness, but then he's been in remission for well past 10 years and can speak from a place of perspective. I'm working on getting to both those places, smile and dignity intact.
Hope is vital in bout with serious illness
Sunday, November 16, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
Hope is a good thing.
Certainly hope is vital for anyone with a serious illness. I’ve found hope in meeting cancer patients surviving more serious cancers than my own colon malignancies. I’ve found hope while experiencing the oddly generous nature of friends and while accepting the respect co-workers have granted me when I’ve been down. And the response from Freeman readers has been beyond amazing.
One e-mail from a reader has given me cause for joy for days, now. The same Decadron anti-nausea drug that had been giving me excessive hiccups — gasps so powerful I was afraid I’d inhale an extra-strength, rapid-release Tylenol gelcap — can also cause an excess of emotionality, the reader explained.
“S—-, lady” I e-mailed her. “I thought I was being a wimpy f—— for occasional bouts of ‘emotionality’ when people approach me with tears in their eyes.”
I paraphrase excessively here.
Next time this happens — and it does happen every few days — I will be able to lay out a calming hand and a wet smile and say, “You’re on Decadron too?”
I’ve met brave cancer patients who have found their hope in prayer, and I think that’s fine as long as they don’t focus so much on prayer that they ignore the referral their doctor gave them to Memorial Sloan-Kettering Center Center or the Mayo Clinic. That referral may well have been the lifeline God was directing their way, gosh darnitt! Whenever they don’t respond, and God watches those referrals waft down into the trash, I’m pretty sure He or She is letting loose a blue streaks of sanctified swearwords.
Please consider that a good cancer doctor – perhaps guided by God - may be able to help a patient achieve wellness in nine to 24 treatments.
Herbal remedies can be great too, in my view, as long as they are complementary and not only “alternative.” “Complementary” works with Western medicine, and with few exceptions “alternative” medicine ignores the docs in the white suits and trusts in pseudo-science or worse. Doctors can make a lot of mistakes of commission and omission, and these will be subjects of future columns, but have enough faith to accept that most docs actually want to make people well.
I’ve met patients who say traditional therapies make them so very sick that they’d rather go “alternative” than continue with Western meds. That is a valid choice, as is ending all treatment, especially when weighing quality-of-life questions against limited expected lifespans. It does make cancer survivors uneasy, however, especially among those who learned tricks to overcome similar pains of treatment and have come out the other side alive and thriving.
I have no doubt that too many people have died too young because they so trusted purveyors of alternative meds that they ignored lifelines that could have allowed them to attend their children’s graduation ceremonies or hold their grandchildren while still enjoying life.
So far, I have turned down several non-denominational faith healers and one saleswoman who offered (super duper) chocolate as a partial cure. God’s help I will accept, but no one in a tent and a bad suit will be allowed to place his hand on my forehead and make any claims of healing on my behalf, unless I am drugged against my will.
For me, learning how to tell the difference between a false hope and long-shot treatments that could drastically change the outlook on my colon cancer has been front and center lately. I’ve spoken to other cancer patients with tough odds to fight, and they too want to hear about stories of hope. We smile and cheer when one in our “club” makes a breakthrough.
We resent doctors who provide hope by exaggerating the effectiveness of treatments. It is fine to say some people have responded amazingly well to a treatment and we want to hear about those instances, but be sure to lay our long-shot “cures” early.
Lately, I’ve accepted that I’ve begun a course of treatment and it is time to allow it to work, not obsess about those other pockets where my cancer has popped up in scans. For those with serious cancers like mine, surgery and radiation treatments just don’t make sense because there is too much disease to slice out or blast with radiation. Knowing that this swelling or that sore spot may be cancer isn’t that helpful to me right now. I just hope the chemo will find it where it lives and make it more miserable than it is making me.
Chemo is a broad-brush treatment, damaging cells throughout the body, but it harms the cancer cells more. They reproduce faster and die faster. That means if my chemo happens to hit those bad cells more, and my good cells rally faster, I’ll be winning the battle. There is a lot of talk in the field of reducing cancer to the status of chronic disease. Sure, there will be ongoing treatment and perhaps a lifetime of chemotherapy, but it need not be the center of one’s existence.
Ways to take advantage of bad situation
Sunday, November 23, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
I once knew a woman who enjoyed tempting young men who were considering careers in the priesthood.
Now hold on here! I can relate this to my diagnosis of colon cancer and the theme of this column if you’ll just give me a chance.
A fellow lifeguard at a seminary in St. Paul, Minn., this woman was blonde and very pretty, in a glandular sort of way. And from soon after I met her, it became obvious that she found her job “guarding” young priests-in-training to be comparable to that of a hungry cat guarding fish in a barrel.
To put it bluntly — and vaguely enough for newspaper work — she was taking advantage of the situation.
Now that I’m living with Stage IV colon cancer, I’ve had friends suggest that I, too, should “take advantage” of my situation.
There is some appeal to this idea, and no, I’m not talking about looking for work as a lifeguard at the nearest nunnery.
Firstly, I don’t know of any nearby nunneries with swimming pools, and secondly my lifeguard certification lapsed around 1990.
And besides, I’m married to a wonderful woman.
No, the first suggestion I “take advantage” came from a Chicago friend who wants me to use my status as a cancer patient the next time I get pulled over for speeding. My buddy hasn’t worked out the follow-through on how this would work exactly, but he thought it would be grist for great conversation once I pulled it off.
His recommendation popped up in my mind when I was late for my first metastatic cancer support- group meeting, a few weeks ago. But alas, as none of the coppers were able to catch me en route, I didn’t need to invoke my “cancer boy” status.
Which brings me to the question of tactics and back to the aforementioned lifeguard.
Whenever my lifeguard friend was speeding, she always carried a photo of her father in her purse. As she showed her arresting officer her driver’s license, through the little see-through window in her wallet, a photo of her dad would flip into sight.
The officer would look at the last name on her license, examine the photo of her dad in all his Minnesota State Police uniform finery, and send her on her merry way.
She loved to tell this story each and every time it “worked.”
We didn’t talk so much about what went on between her and the seminarians.
But back to me, Blaise Schweitzer.
I’m trying to figure out what sorts of identification card I need to have alongside my drivers license in order to elicit sufficient empathy, should I ever speed and get caught again. Perhaps my Memorial Sloan-Kettering Cancer Center ID card? But then, I’d probably need some kind of sob story to link my speeding with a pseudo medical emergency too.
I’m not sure that would work.
Lately, the most satisfying advantage I’ve taken of the situation has been visiting with friends with whom I’ve lost touch, and not of the sort lifeguard woman employed.
Between dinners, lunches and walks around Dietz Stadium, I find my interaction with friends has more than tripled, recently. There has been research on how Americans have become more insular than ever and I admit I had fallen into that trap.
I don’t know if I had been staying home more to save money to pay the mortgage, or simply because I was too lazy to drive out to see a friend living beyond the bounds of Kingston. I do know, I was moving in smaller and smaller circles.
It seems senseless that it took a cancer diagnosis to remind me there are good people in the world worthy of wasting time with, whether it be walking around the local dog park or just chatting at the local diner, nursing a hot chocolate.
With my liver compromised by cancer, I stay away from spirits, nowadays.
That means it will take some other social lubricant to make me talk about the women who — assuming I was a priest in training at the seminary — attempted to introduce me to other forms of enlightenment.
I can’t sleep because of ‘nocebo effect’
Sunday, November 30, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
Right now, the power of suggestion is coursing through me and sleep is impossible.
The cause of my sleeplessness really isn’t a suggested anti-cancer drug. So I’m going to obfuscate and prevaricate to the best of my abilities so I don’t pass on the bad vibe. See, I am experiencing a sort of reverse placebo effect.
The placebo effect — in the news a lot lately — is when a doctor (or even an alternative-medicine proponent) convinces a patient that a relatively inert substance will make them feel “better.” In study after study, a significant proportion of patients will report improvement in symptoms after such hype-filled deliveries.
But back to me, my juggling act with colon cancer and my current inability to sleep. A few weeks ago a very nice nurse mentioned a patient who feared one particular drug because of how it ramped her up and made it hard for her to sleep.
And now I can’t sleep, these two weeks later. I was given the same drug intravenously some 10 hours ago and I’m staring at my unblinking screen unblinkingly.
I don’t blame the nurse. She’s nice, and I’d likely have come across the side effect anyway in my online research. Some doctors suggest their patients not delve too deeply into such Al Gore-poking and prodding because some of their patients react by not doing things like I’m not doing right now.
Not sleeping.
They call it the “nocebo effect” and some refer to it as the evil twin of the placebo effect.
Certainly, the quadruple deadline I’m under could have as much to do with this inability to sleep as the negative (unintended) suggestion of my nurse. It could also be due to the fact that I seem to be getting stronger, possibly due to the chemotherapy helping kick down my cancer, a bit. Some of my liver “numbers” are improving.
Or perhaps I have more tolerance for mayhem, and with less exhaustion comes more difficulties falling asleep.
Perhaps I’ll try to swim the morning before my next treatment. By then my cold intolerance has usually subsided so I can take the cool pool and I’m sure the honest fatigue of exertion would beat most artificial means. As long as I don’t wear out any of my healing abilities, that is.
In the military, a different version of this sort of “nocebo” psychology has been used for more than a century. Call it the “grossebo effect.” It involves photographs of sexual diseases so disgusting that (some) military men have actually stayed away from prostitutes.
Or they used condoms.
The photographs were so horrific that some who saw them fled to Canada.
Canada is a North American country — to the north of the United States — that was used as an escape valve for those who were drafted to serve in the Vietnam War. The draft was a means of conscripting troops (soldiers) for war, soldiers who did not necessarily want to serve. The Vietnam War was a “conflict” that succeeded in scaring Americans from invading unwelcoming foreign countries for 26 years.
Call it the “gawdawful-Vietnam War effect”
Did I say I’m wired?
I’m wired.
And I fear the crash. Call it… never mind.
But I will employ whatever power of suggestion I can muster to encourage those who have put off their mammograms, prostate-specific antigen tests, fecal blood tests, colonoscopies, pap smears, skin cancer screenings, digital rectal exam, testicular digital exams or any of the regular exams that can make doctors turn cartwheels.
See, most doctors love to catch cancer early when it is most likely to be beaten. It is a victory they can claim over a devastating disease, and is victories like these that make most doctors “go” the extra test to catch cancer early.
Allow me to use a power of suggestion that “early” is the best damn time to find cancer.
Really.
Get your tests done.
And send me a line to blasch@freemanonline.com.
Compliments from family have discount
Sunday, December 7, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
Anyone who believes all the wonderful things their mother has been saying about how clever, beautiful or handsome they are is in for some serious surprises.
I learned not to trust my mother long ago – at least when it comes to my wonderfulness – and that has extended to assessments of my writing as well.
After being diagnosed with colon cancer, non-related readers have been the more trustworthy supporters– especially those who have had cancer or who have dealt with family members who has dealt with cancer. They’ve offered a wealth of advice on diet, care and what cancer patients and their families need more of in this crazy health-care market. They stop me in the waiting room of my doctor’s office or even as I exercise around the perimeter of Dietz Stadium. It somehow means more when a complete stranger jumps in with kind words or advice than when it is a friend simply trying to make me feel good.
That’s part of how the “friends and family” discount goes. You have to discount a third of the nice things friends or family say about anything: How fat you don’t look in those new pants if you’re a typical ‘Merican, or whether those hollow cheeks are really that noticeable if you’re a cancer patient with unwanted weight-loss issues.
Come to think about it, folks probably should discount a third of the not-so nice things friends and family have to say, too. And while you’re at it, “employee and family” pricing on oversized sport utility vehicles will also probably be a bad deal for as long as gasoline prices remain above $1 a gallon.
Some regular correspondents have read my mind and asked me to look into subjects dear to my heart – such as what local emergency rooms must do to improve – but others have pressed me to go after topics beyond my investigatory budget. I have connections, but getting international drug firms to reveal how they’ve worked out prices on their cancer drugs will take some doing. Anyone with links to research or articles on the subject are welcome to forward them my way. See e-mail that closes this column.
Others endorsed my feelings about the need for an online database or 800-number service about which movies or television shows may be more or less appropriate to watch, depending on one’s mood. There are viewing options that may be better to watch when chemotherapy (or a stage II or III or IV cancer diagnosis is likely to be delivered.) One of the “Dharma and Greg” suggestions was double-edged.
One local reader said it was “funny and did not take much intellect.”
Already, I’ve discouraged people from watching episodes of “Deep Space Nine” (especially the one where the gelatinous shape-changer named Odo asks the doc “how long have I got?”)
Here is a member of a made-up species that reverts to goo asking a member of another species that has “just” met him to calculate how long he has to live?
Have I mentioned cancer patients, generally, dislike “How long” questions?
As I was writing this, my wife asked my chemo nurse how long I’ve got (before I can leave the office.)
The “How long does he have?” startled me even though it was clearly not about my personal sunset clause.
But back to my database. Please send me favorite “not-to-watch” films or television episodes that cancer patients and their families might want to avoid. I had an aunt who once was the voice of a call-in-service about which films were offensive to Catholics, so I guess I could be continuing a family tradition, just updated.
Already, I have enough anecdotes about doctors and nurses ignoring the concerns of cancer patients and their families or advocates. More are welcome, however, especially followed up by daytime telephone numbers.
I am especially offended by professionals who profess: “I’ve been doing this for 19 years!” and dismissing valid concerns. Among them? What benefit is that horse-sized pill if a patient can’t keep down the medicine?
I also want to hear more first-hand stories about the effectiveness of the local chapter of “My Cancer Society,” how well some of the big hospitals deal with lodging for cancer patients, how transport programs have worked for cancer patients (and the volunteers who make them possible) and much more.
Being “in” the cancer community has connected me with plenty of local cancer patients, but I realize many others are stretched thin working their day jobs, or may be staying home, “relaxing” with their chemotherapy or aftereffects when they could be helping me. So please reach out.
If my plan goes well, you would be helping others headed into experiences similar to the ones you survived.
Not all queries can be answered, of course. I’ll admit I was compelled to answer one from the guy who wanted to sell more copies of his anti-Western medicine book recently, but he was too far gone to communicate with directly.
I love to hear “good questions” for doctors visits. I want to hear about resources I have not yet plugged. Or what about your favorite cancer joke, the one that only cancer patients can tell without getting beat up?
You tell me.
Suffering creates manly wimpiness
Sunday, December 14, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
When it comes to discomfort, everything is relative.
At the tail end of three particularly draining days of chemotherapy this week, I found myself with lower back aches, a bloated stomach, leg pains and a bit of a fever. Despite reminding myself how much more exhausting chemo can be for other cancer patients, I still managed plenty of self pity.
I’ve heard breast cancer survivors speak of how they sometimes suck on ice while receiving their particular formulation of chemo — to help prevent mouth sores — and how that has forever ruined ice for them. Even the clink of a cube in a glass can trigger nausea in some. Others have told me how the blue “healing lights” they arrayed around themselves during chemo failed to “heal.” One patient said she wound up feeling puky at the very sight of a glowing blue light.
Many of these stories have come via e-mail or through chats with others at cancer Christmas parties and the like. The stirues usually remind me I’ve got it pretty good by comparison. The pain reliever I took 20 minutes ago should knock down the fever pretty soon and I’ll start feeling more human again.
What helped me most, though, was a short cooling walk to the bank a few doors down from the Freeman. Some vaguely familiar woman with a big smile called out my name and gave a cheer as her car slowed on Hurley Avenue. In case I didn’t grasp what her somewhat-conspicuous head wrap was concealing, she tore off her covering to show off her bald head.
I shook her hand and she held on extra long and wished us both luck with our treatments. As she drove away she gave a “Wooh Hoooh!” like a 16-year-old girl. I couldn’t help but smile for the next few moments.
I must know her somehow, but without her hair I drew a blank.
It reminded me of how my own mother did not recognize me when we went to pick her up at the airport for Thanksgiving this year. I had to wave both arms and walk directly towards her to get her attention. Moments later, she was all Minnesota sweet and strong and pretended there was nothing shocking about my new look.
I still have my hair, although one of my nurses has let me know that — contrary to what I’d been told earlier — it will start thinning soon.
I don’t even count the number of my chemotherapy visits because my treatment is open-ended, aiming to act upon my colon cancer as if it were a chronic disease with near-constant treatment.
A few days ago, a longtime cancer survivor working with the “chronic” tag wrote me and mentioned how his disease has fallen off the list of discussion topics when his family gets together for holidays or other occasions.
“So many people – even family — are just scared to death to talk with me about my health,” he said. They claim that they don’t want to upset me, but I suspect strongly that they don’t want to upset themselves.”
Another family shared a “12 days of chemo” carol they developed with their daughter as she fought her cancer. I’m sure tears of laughter and sadness were intermingled during the creation of that song, and I admire the success in actually GETTING to the laughter.
I imagine the nurses and doctors were confused to hear medical procedures set to music and punctuated by guffaws.
Most of my friends and family still won’t laugh at my morbid jokes, but they have supported me as I’ve wrestled with doofy doctors and overly controlling support-group leaders. More than a few readers have sent in comments about how they dropped their support groups after finding them “too depressing.” I’m afraid they did so too soon, but I respect their choices.
The best interaction I’ve seen in group has been between cancer patients who are comfortable in their skins and willing to laugh and hear one another without judgment.
Much of the humor has been expansive and teasing — in a good way. One salvo “touched on” a successful body part reconstruction so … delicate … that it defies my limited powers of obfuscation. As the only male in the group that day, I squirmed a bit but no one backed off on my account and that made me feel more included.
It reminded me of a “Saturday Night Live” commercial for a faux feminine hygiene product so personal that no one really knew what it was supposed to treat.
I’ve tried to tell my wife that when I complain of discomfort, she should apply the standard male-deduction percentage. Partly I just don’t want her to worry, and partly I agree that men make poor sufferers. Women are said to tolerate body piercings better than men because their “parts” usually endure more offenses than male parts do, due to childbirth and nursing and the sorts of beauty regimens or footwear choices that make so very little sense.
So an occasional “Poor, poor thing” is fine, just don’t prematurely bury me in sympathy (or dirt) as a letter writer all but did this week.
Restrictions on diet are food for thought
Sunday, December 21, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
A prissy (but superior) acquaintance once told me she couldn’t tolerate beer because it filled her with gas and made her uncomfortable.
“Have you tried burping?” I asked her.
Well, she has the last burp on me these days, as I can neither imbibe alcohol nor seltzer, my favorite daytime beverage. At least I’m phasing out the seltzer, reluctantly.
The chemotherapy being used to treat my colon cancer has made it difficult for me to handle gas-producing foods or beverages, and the damage the colon cancer has done to my liver makes alcohol consumption downright stupid.
Point of order, here, cancer is always identified by its place of origin and treated differently, so the cancer in my liver (and lungs) is still called colon cancer although it is separate from my colon.
It is a bit annoying that although I have always treated my pulmonary system with respect, my lungs now have multiple growths of — yes — colon cancer.
I have lung capacity to spare, fortunately, so that is the least of my short-term problems. In fact, one of my doctors was so surprised at my wind power — despite my asthma — that he let slip that I could out gust him in the peak-flow meter test I took a decade or so ago.
But then, he acknowledged, “I smoke pot.”
I thought it a quirky acknowledgment for a physician, but I guess it was just a sign he didn’t see me as the blackmail type and thought it might open me up to discussing my crack habit or my glue sniffing or my gasoline huffing “problems.”
An athlete through my early 20s, I always was able to avoid recreational drugs because I felt they were unnecessary challenges to my ability to process oxygen and win swimming and running races. That’s a high I still hope to enjoy, even if I have to challenge my niece and nephews before they get too fast or I get too slow.
I still don’t like the idea of inhaling smoke (or fumes) on purpose. The sensations that come with “therapeutic” pot use don’t do it for me, despite proponents’ claims that the drug has salutary effects on the nausea and lack of appetite related to cancer treatment.
There are plenty of “plan Bs” for me to work with these days as I try over-the-counter remedies for all of the above and have access to some of the most powerful but unpleasant anti-nausea drugs that are manufactured.
Meanwhile I have discovered more about true friendship and compassion and am working on reciprocating the many kindnesses that cheer me weekly.
This Christmas, I’m gofer boy in the kitchen, helping my chef-wife make almond-nut toffee for friends and family.
Most of them seem to understand that this is a high-value gift. Anything that can kill its maker should merit bonus danger points. When splashed across flesh or spilled onto pets who like to dance underfoot in the kitchen, boiling sugar and butter can be a scream! While our guard-dog lab-pit mix has some sense, our senile basenji (that’s a cat-like little dog with big attitude) does not. He has taken to igniting his tail on our wood stove of late, so I’m sure we’re going to have to lock him out of the kitchen for our festive food-making fun this year.
It isn’t Sierra Nevada Pale Ale, but hunks of our crunchy caramelized toffee layered with toasted almonds are wonderful, especially when coated with milk chocolate and another layer of nuts.
And while the candy puts teeth in jeopardy, eating the toffee won’t make you burp or say silly things at the Christmas parties some companies used to have.
Mostly, we’ll be staying home with a few close relatives and their dogs and that’s going to be great. We may slip out for a midnight Mass as some of my guests share Christian roots that remind them of loving relatives who have since died.
I don’t know if I’ll need to get to church early to ensure seats, or if I should just forgo my generic Gas X, Beano and Lactaid and watch the pews empty all around me.
That would mean my loved ones will be able to just stretch out, take shallow breaths and pretend there isn’t an elephant in the room along with baby Jesus.
Bureaucratic confusion due to infusion
Sunday, December 28, 2008
By Blaise Schweitzer for the Daily Freeman newspaper
Some of the chemotherapy I’ve received for my colon cancer over the last four weeks has been caught in limbo, helping me understand why patients lose patience with bean counters.
At fault? My insurance company’s bureaucrats and those at the chemotherapy-supply company that contracts with them. Both are so resistant to the obvious that double-dope slaps are in order.
It isn’t complicated. Every other week — for more than two hours — I receive some chemotherapy in my doctor’s office. Then I leave the office with a manpurse that holds a pump and a glassine pouch with some of the least-expensive chemotherapy drugs available.
For the next day and a half this medicine — in tiny doses — squirts through a tiny tube through the port in my chest and into my bloodstream. The drug is part of a regimen often given to colon-cancer patients and it allows me to go to work and feel productive.
But my insurance company, MVP, and the drug supplier, Coram, have comprehension issues. Coram representatives have told me and my nurse that my drugs must be delivered to my home in accordance with MVP policy despite the fact that it is the nurses at my doctor’s office who administer the drug to me.
What was “certain” (according to Coram representatives at least) was that this MVP policy could not be changed and I should simply take the express mail pouch that has been landing on my porch every other week and bring it to the doctor’s office so they could properly handle it.
It is a waste of both companies’ money and time. And it angers me.
After what seemed like hours on the telephone, I discovered MVP had classified the medicine as part of “home-infusion” therapy, so they surmised “home” is where it belongs. But no one at my home happens to be certified to program the pump that administers the medicine.
It is kind of like sending plaster and bandages to someone’s home after they break an arm because once the cast is applied, that’s where the “home healing” would take place.
Besides, for my “home-infusion” chemo to be done right, a flurry of blood tests must be completed before the pump is hooked up to my bloodstream. We do not have a lab in our home to track my blood-thinner levels, my white-blood-cell count or my platelet levels or any of a half-dozen other (seemingly upbeat) indicators of my health.
I can gash myself and confirm my blood is still RED, but that’s about it.
I finally managed to explain this to an MVP representative who swore this home delivery wasn’t part of any MVP policy he knew of and, Gosh! That doesn’t make sense. But after he spoke with a Coram representative, he changed his tune. Still, he made assuring sounds that I should just let him handle the bureaucratic snafu.
In the midst of all this, there was talk of drugs possibly being misappropriated if not sent to me. That’s supposedly why it was decided my front porch was a much safer place to bring my meds rather than my doctor’s office.
Really? I’m wary someone could mistake the mail-order box for an order of Hickory Farms cheese and sausages and snatch it. Or, with this current below-freezing weather, it is possible the medicine could crystallize and possibly damage the tiny tubes that deliver the medicine.
The MVP guy assured me the medicine is packaged in such a way to ensure THAT could not happen.
Really? I asked him if the packages have little heaters in them for below-freezing weather. Tiny sweaters would not do the job, as the meds aren’t actually alive. There’s no body heat to retain, I explained. He made some “Humanah, humanah, humanah” sounds, and again assured me he’d handle the problem.
Still, I insisted he pass me on to my alleged case worker who might better understand. She and Coram went back and forth a few more times before a Coram representative finally called my wife and assured her my meds (and only mine) would be granted an exception to this MVP “deliver-to-the-wrong-place” policy. They will supposedly be sent to my doctor’s office for all future therapy. If those we’ve been fighting with actually follow through on their word, this small victory over two bureaucracies will make a small difference in my increasingly complicated life.
But why would this exception be made only for me?
I can be annoying to speak with, when frustrated, but certainly if my arguments make any sense they should be applied to every MVP patient in similar straits.
I never invoked my status as a reporter during this fracas, assuming simple sense would trump silliness, but if other frustrated Freeman readers chime in, I’d be happy to bump up the volume.
If you are a Hudson Valley-area resident who has this “home infusion” issue, please e-mail me. It would be wrong for me to invoke the powers of the fourth estate on my own behalf, but I’d love to set the same arguments in motion for Freeman readers with similar cancer-care frustrations.
Solving this problem and other similar ones probably won’t save any lives, but it may wake up the bureaucrats to respond to sensible questions about sensible care.
Similarly, if other clear injustices (or obvious red-tape confusion) may be helped with a few phone calls from me and the collection of experts who have been contacting me with offers of help, please outline your case as clearly and simply as possible. I won’t be able to get to them all, so don’t hold your breath until we get results. I tried that strategy myself when I was 5, and I’m trying to work smarter.
I just keep jumping up the chain of command until someone makes sense.
Recent storms bring snow and favors
Thursday, January 29, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Cancer can make people feel helpless, but there is almost always something that can be done by patients and their loved ones to make the disease less awful.
My friends and family have been doing all they can imagine to help, to the point of silliness and self-endangerment. I’ve heard similar stories from other cancer patients with heroic husbands, wives, sisters and brothers and colleagues, although newcomers to the area often haven’t developed big enough friend bases such as the one that my Freeman family has granted me to make similar windfalls happen.
Some people make healing quilts, some drop off warm sweaters and neck warmers and hoodies and sweat pants and space heaters and electric blankets. Others resolve home maintenance issues that can seem overwhelming or even just bring their bubbly kids or dogs along for visits that aren’t all about cancer.
During the recent storms, my wife invaded a coffee break at the nearby Kingston Department of Public Works garage and scored a plow so I wouldn’t have to step through any more snowpiles than necessary, en route to work or my next cancer treatment. I’m afraid to learn how she managed to interrupt what was surely a well-deserved break, but plow guy snugged right up to the curb and cleared every bit of snow his plow blade could get at. Then he offered to do some shoveling.
Which brings me to Kingston’s odd relationship with parking and the mixed message it delivers to some newcomers.
Except for two “TOW!” signs I erected on a long buried car across the street from our home, I’ve never gone after anyone who has parked (directly) in front of our house. This despite the fact that our home is one of those built on such a small lot that it can’t fit a driveway.
I have glared at those who have taken up two spaces or three spaces thus forcing everyone else to search for spots far and away.
The season doesn’t even matter.
When I lived on Clinton Avenue, a landlord — carrying his tenant’s baby — asked me to move my car from in front of the baby’s house. That was fine (at first). When I’d parked there, there were no spots in front of my own rented apartment.
But as I started looking for my keys, landlord guy turned nasty and his tirade rose and vocabulary dropped to include four-letter words — which I pointed out were not good for the baby.
When I asked him if he was local, he said: “All my life!”
“It shows,” I replied, almost instantly regretting my outburst.
Almost.
This “I own the street phenomenon” takes place in Chicago as well, where residents will shovel out the spots in front of their apartments and homes during the huge lake-effect storms that occur there. They then plant lawn chairs in the spots they’ve worked so hard to clear.
Woe be to the person who tries to Bogart those spots.
Bogarting is a term related to illicit drug use and the hogging of parking spots “owned” by others. I’ve done very little of either, but I’ve heard stories about both.
So when I confronted angry baby-holding guy, I should have asked him if he was from Chicago or Kingston.
In Minnesota, where I hail from and where off-street parking is much more common — people are generally much nicer about wintry issues. They’ll even stop their snowy walks and step into the street to push cars out of drifts.
The last time I tried that in front of my Kingston house, some short guy with a New York City accent did not even look back at me when I asked him to try backing up his car before rocking forward. He just kept flooring his oversized car and ignoring me and my wife as we were doing our all to push him clear.
When we last looked back, blocks later, he was still stuck and revving his engine. And proud. And short.
I should be quick to say I’ve met other long-time Kingston residents (with New York City accents) who have done much to counter this bad rep.
The DPW guy won our hearts during the first storm of the season, and days later some friends of ours eclipsed plow guy’s efforts by sneaking onto our property with shovels and clearing every speck of snow they could find from every niche they imagined snow should be removed from. They forged paths to woodpiles that neither I nor my wife will visit until winter’s end.
When confronted, they brushed off thanks and asked where we’d parked our cars so they could clear the snow off there too.
Then they offered transport to and from my next chemotherapy session.
Both are semi-retired and one of them has a diabetes-related heart condition that I pray he’s entirely recovered from.
I am being a little selfish, here.
Stage IV colon cancer is bad enough, but stage IV colon cancer with a dead friend in my snow drift would really be a downer.
Too much.
I’m sure there isn’t even a single mention of such problems in the index of the Hospice Caregiver Support Member manual and I hope it stays that way.
Cancer scan and nervous expectations
Sunday, January 11, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
In a few days I’ll be heading in to River Radiology in Kingston to get a Computer Aided Tomography scan of my torso.
It is one of the most important tests of my life.
This is my first scan since last October when I started chemotherapy for colon cancer. Once the computer renders my internal organs into visual simulacra, my doctors will be looking into whether the cancers in my colon, liver and lungs have shrunk, stayed the same or expanded.
In support groups and in daily life, I’ve been around men and women who were similarly nervous about their cancer scans. Some were using alternative medicine, others the most traditional care possible and still others approaching the end of their “Western” medical options and are now considering care of a sort that most American doctors would sniff at.
I have no idea how my scan will turn out. I still feel a fullness in my gut and some odd pains that could be the cancers — or not.
I told my sister-in-law that my abdomen feels so swollen lately, I’m either chock full of cancer, or I’m full of mostly digested but not yet expressed dietary matter.
I did not use the euphemisms with her, however, and she replied in kind.
“I hope you’re full of s—-,” she said.
She’s sweet that way.
I’ve decided to wait on receiving the analysis of the scan until I can discuss it with my doctor at Memorial Sloan Kettering Cancer Center in New York City on Jan. 13. I’ve also decided to report the best of the results to my friends and family no matter what the analysis says.
The good news is, early chemotherapy usually works pretty well. It is only after months that it begins to “poop out” and become less effective.
Usually.
That’s when the next stage of chemotherapy kicks in — should I choose to endure it — and more of the tough decisions pop up. Should I try to get into one of the medical trials that may accept me? Should I get a third opinion on my care?
As options run out, patients start to talk about the ratio of good days and bad days. They count the days that they feel are worth living and the days so painful or full of dread that they are not.
Right now, fatigue is my nemesis and it seems to hit hardest on the third day of my chemotherapy. This week that will coincide with one of my scheduled support group meetings. That’s a good thing because I almost always come away from the meeting feeling better than when I arrived.
Often people will talk about their latest scans, in group. It helps that almost everyone in the room has been through the experience.
Sometimes people are so eager to talk about their test results that they edge in ahead of others. Mostly, group members nod knowingly and listen before insisting that the next person to speak should be the person who was cut off.
There is little need for fancy therapy lingo about feeling powerless or angry. With few exceptions, the members of the group don’t need anyone to draw it out of them with careful phrases. The feelings are right there on the surface.
I know my emotions are not very well hidden, though I do try to suppress them in daily life.
I try to keep hope and the humor on my public face, but my ability to do so varies with fatigue and the lists of bills I have to pay; thank you notes I’m compelled to write; Christmas presents I still must mail; articles I must finish; and food I must consume whether hungry or not.
Except for a dip in my hemoglobin level, my blood seems to be holding up under the chemo assault and I’m trying to grasp that good news as firmly as possible. I’m also trying out psych meds for the first time in my life, and I’m intent on socializing as much as possible with people of good humor.
Focus on the positive, push away the negative and welcome those with smiles into my life.
After cancer scan results, some relief
Thursday, January 29, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
DURING treatment, cancer patients have to give up a measure of control. For the patient’s well being, however, the more power, respect and compassion given the patient, the better.
For those whose cancer has moved beyond a single organ, as is the case with my colon cancer, the experience with cancer medicine starts with bad news and goes up and down until it “ends” with remission or it goes up and down until it ends with death.
How the “down” news is delivered is important.
Even good news needs to be delivered by someone who can recognize it as positive, and put it in context.
My local cancer doctor didn’t seem to get the message that I wanted to hear my latest CT scan results analyzed, first, by my doctor at Memorial Sloan-Kettering Cancer Center in New York City. He spilled some information to me as I was trying to stop him this week. Then my new MVP HMO case manager/nurse woke me up early in the morning of my trip to Sloan-Kettering and confused matters by telling me MVP may not cover my Sloan visit. It wasn’t until hours later, not long before we were to leave for New York City, that she corrected her mistake.
Then I learned my doctor in New York City did not have the previous scan to refer to for comparison purposes. The original copy of the first scan of my cancers was in a less-favored computer format, so the people at Sloan-Kettering didn’t bother hanging onto it. Had we known, we would have ensured that a copy of those October results and the most recent salvo would have been converted to the preferred format.
The very act of picking up the results of the scan from the local radiology facility was traumatic for my wife and later for me. A written analysis of the scan was resting on top of the packet she was given, and that analysis seemed to contain very bad news.
But when we arrived at Sloan, we were told the results of the scan, as a whole, were positive. Some dubious minor growths in lung and lymph node cancers were more than balanced by significant reduction in the size of the cancers in my liver.
LESSON?
For me, at least, it is best to have a scan analysis done by the most experienced person possible. Someone who can get to the big picture quickly, with alternate treatment options at the ready.
I thought I’d had my wishes laid out well in advance, but next time perhaps I’ll put it in writing and hand it to everyone dealing with my case.
Or I could shove it in their faces. It wouldn’t be that hard to get a tattoo inked into my flesh reading: “Don’t deliver bad news unless previously authorized.”
We can always use editing marks to amend the “medical directive.”
I’ve pretty much decided against getting the tattoo variation on “BUCK CANCER” inked across my chest as I’d considered early on, partly to keep from offending moms at the YMCA pool.
I was able to swim a few weeks ago with my niece and nephews when they visited over the holidays and that was great. I think they would have gotten a kick out of the bucking tattoo, especially my 11-year-old nephew who has impressed me with his awareness of what is going on, and touched me with his concern.
I’VE ALSO been touched, recently, by a note I received from Pat Davenport Hall, a member of the local Davenport clan who has a son near my age with Stage Four colon cancer. It was nice to hear of another cancer patient who has proved none of us need curl up and wait for death. Also an athlete, Rich Hall’s background is more in football than my preferred swimming, but I think I see some similarities between us nonetheless. His mom directed me to his Web site, www.caringbridge.org/visit/richhall, where I had to laugh at his attitude and one of his literary references. “Today I quote a more modern thinker. As Sponge Bob Square Pants states, ‘I don't want to face my fears... I'm afraid of them.’”
Rich Hall is actually mostly about facing fears and is a good role model for other cancer patients who may enjoy reading his words. He has survived three years with his diagnosis, and bucked up (in the other sense) under a lot of difficult treatment.
Some things to aspire to.
The pursuit of luck and good treatment
Thursday, January 29, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
We’ve been thinking a lot about luck in my family.
A former choirboy and altar boy, I maintain uncertainty about where divine intervention intersects with luck, but I appreciate family members and others who have knitted and quilted while praying for me as I deal with my Stage IV colon cancer. I know many pray when loved ones’ “luck” seems to have flipped to the negative.
Much of my life has been lucky. I am the only member of my family to have somehow avoided the scourge of acne — something that hit all my siblings like a bully with brass knuckles. We once joked that the ugly stick passed me up (during high school at least) because I may have been the fathered by the mailman.
I know that isn’t true.
I’ve also felt extremely lucky to be touched by whatever mix of good genes and work ethic allowed me to become a scholarship track and cross-country runner for the University of Minnesota — and a life-long swimmer. When I found out my diagnosis in October, I teased the last man to best me in the pool.
One of Kingston’s finest triathletes and veterinarians, he barely beat me in a long and rigorous workout two Christmases ago. So when he e-mailed his concern for me and my new challenge as cancer fighter, I reminded him of that workout and let him know that he didn’t really beat the athletic me, that day. He merely bested cancer boy, sandbagged by unproductive cells gone wilder than a beery college woman on spring break.
He teased me right back about my excuses, in keeping with the sacred way of the locker room.
In my high school years, I was lucky enough to survive car rides with fellow athletes who competed to push the bounds of drunken driving. Any one of those rides — which included flying through stop signs — could have been fatal.
And I’m still lucky, lucky to be supported by a wife who believes in that “sickness and health” vow, and backed by some of the best co-workers any journalist could ask for.
Marriages that survive life stress are increasingly rare, and meaningful work — such as reporting news — is as hard to find as a drug-free top-level shot-putter.
When I was in journalism school, I was given the usual talk about how the fresh-faced student to the right and left of me would never actually apply the lessons they were being taught in “J-school.” And those who might dip their toes into journalism, would only survive for a short while at an incredibly low wage before they “sold out” to become public relations professionals dedicated to the promulgation of half truths and lies.
That’s according to one of my most blunt journalism school professors, a man I respected greatly until I learned he was “lucky” enough to be sleeping with one of my most-interesting classmates.
I’ve been lucky enough to dodge many dire predictions about the demise of my industry and I imagine I may even find myself working for a paperless news businesses if NewsGoogle doesn’t choke the life out of every decent publication that remains in this twisted world before they evolve to survive.
I continue to revel in my job, counting myself fortunate for being able to meet so many great people and pick their brains about virtually anything that interests me. I’ve interviewed barely hinged (and sometimes barely clothed) artists; over-the-top, cross-dressing cabaret performers; marginally sane parents; soapbox-derby exhibitionists; student-focused chef instructors; dedicated, passionate schoolteachers; caring medical professionals; good and bad religious fanatics and the occasional wacked-out politician or politician wannabe who strays into my realm.
I was once awakened early on a weekend morning by someone who thought I was slighting the Pope during a papal visit to New York City (how dare I make a passing reference to the Inquisition!) What amazed me is how the woman somehow thought the Pope would get a copy of the Freeman along with his morning bagel.
Or whatever.
Some people say you make your own luck and that belief has just enough of a hint of truth to be harmful. By extension that logic would say we’re also making our own bad luck. While there’s a wisp of truth to that, too, it blames too many people for things beyond their control.
Riding with drunk drivers? Begging for “bad luck.”
Hit by Stage IV cancer despite regular checkups and a generally healthy lifestyle? Not begging for anything but hope.
At age 40, four years ago, I did see a local doctor about some of my symptoms. They were dismissed as part of my long-standing irritable bowel disease. That’s the name for a sort of idiopathic disease that troubles many. Idiopathic really means “we’re virtual idiots when it comes to figuring out the hows and whys of a disease and we admit it by calling it idiopathic.”
Blood in the stool can be one of the symptoms of irritable bowel disease, also called IBD by the squeamish.
Which brings me to another abbreviation and the lack of luck my family has had with New York’s statute of limitations, a statute I’ve come to understand has expired in my case. A kind lawyer I know referred to the Statute of Limitations as SOL, and was generous enough to laugh when I asked if that means I’m spit out of luck. Stool out of luck?
Well, I may have been bucked by the legal and medical system, but I’ll continue to pursue “luck” and decent treatment by any means necessary.
Irritability in the right and wrong places
Sunday, February 1, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
A cancer diagnosis can make other troubles diminish in importance, or seem to until the bill collectors get really rude.
The prospect of death can makes bills or small home-improvement jobs or high-maintenance “friends” seem unworthy of attention, even as ostensibly insignificant problems suddenly seem worth fighting for.
Somehow Google senses these things before most mortals do. Google mail, for example, is free because it throws relevant ads at those who use the service, scanning the e-mails to target people with ads that are supposed to make Google money (like when it steals from newspapers for its Google News function).
So when I started getting advertisements with my Gooogle mail about “breaking up” with friends who don’t deserve me I had to laugh.
The colon cleanse ads were less laughable.
When it comes to ending friendships, I’ve met cancer survivors who had “friends” or family who couldn’t manage to be there for them for even the most minor support. For me it was friends who I’d distanced myself from because they had burned me even before the cancer diagnosis – or were never really my friends but assumed they were. When it became clear that my colon cancer was truly serious these selective foul-weather “friends” suddenly wanted to have deep conversations with me.
While cancer can make some things seem less important, like dishes in the sink and piles of laundry, other “crises” seem to rise way out of proportion. Even a large pickup truck taking up two spaces at my local cancer-doctor’s office was enough to set me off. There were no other spaces in the lot and the next lot over seemed a walk-too-far.
It was a cold day, and my most-recent chemotherapy treatment had been administered just a few days before, making me very vulnerable to the cold. That means my nose buzzes, my fingers become painfully numb and I feel generally weak when I spend too much time in the cold too soon after chemo.
So I backed my itty-bitty car into the tiny sliver of a spot that was left adjacent to the truck, employing my still-active valet parking skills.
The old man sitting in the big pickup truck started yelling and swearing at me and I couldn’t help but reciprocate. I am an even-handed guy, after all. Wheezy man accused me of being the gaping, terminal end of a colon, and asked how he was going to get out of his truck now that I’d cramped his style.
I walked over to the other side of his parking space, where there was a plethora of room, and told him to move his “bucking truck.” The truck wasn’t really rocking, but its owner seemed like a first-rate buck-up to me.
It was all pretty pathetic, in the end. Turns out we’re both cancer patients with serious but different ailments. I saw him later in my doctor’s office and he made a point of telling his buddy that he’d given me a piece of his mind. When I got out to my car after my appointment, however, I found he’d managed to marshal the strength to move his truck over almost 3 feet.
I’m not proud of what happened. I prefer to afflict the sort of comfortable people who make life tougher for others, and I have spent plenty of time doing so in between writing articles.
But then again, I’ve always thought bad parkers deserve the death penalty. It’s just that in this case I probably have enough culpability to get the ax too, based on my own set of standards.
I’ve always had a strong sense of righteous indignation, usually applied in service to others who have been screwed over. Lately I’ve been getting better at asserting for myself. I just must ensure I do so in the right direction, with the supervisor or manager who has the power to fix the problem.
Sometimes I like to say, “I realize this wasn’t your mistake, I just want to get to the person who can help me, soon!”
And for medical issues? I’ve just developed another phrase that I salt into conversations with medium-level bureaucrats. “If X wasn’t done, and Y wasn’t done and three months later X and Y still aren’t being done properly, am I not receiving substandard care?”
In one conversation I managed to say “substandard care” five times.
Five days later, while on vacation, I received a cell phone call telling me the problem was solved, from whence the problem originated (in an inadequacy of the supposed high-level hospital’s computer system); and how it was solved (by asking a Kingston facility to adapt their results into a format that would make things extremely easy for the super-duper hospital’s staff to deal with).
Makes a guy want to stay away from the post office or any place where the bureaucratic system has more ways of saying “No” than saying “Yes” because that just makes everyone irritable.
Some Viagra questions for the squeamish
Sunday, February 8, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Everyone is squeamish about something, but when it comes to medical treatment it doesn’t necessarily result in the best care for any patient trying to regain some comfort and ease of living.
After burning her chest with a huge pot of boiling water, my wife learned that some doctors of Middle Eastern descent are afraid of being confronted with mammary glands. She applied a silver-based burn solution and her scars eventually went away, but not as fast as if her doctor had actually participated in the treatment.
Me?
I’ve had female doctors squirm away from me as I readied for a digital (index finger) prostate exam. And let me say that in med school all doctors should be taught that it is just too funny for them to say the words “little prick” (in a sing-song voice) whenever injecting anything into any part of any male anatomy below the waist.
Any needle can cause a “little prick” of pain, but the lingering “littleness” could be a problem for weeks. Not for me, of course. Really. I just thought it was funny.
And when I’ve spoken of testicular pain related to my chemotherapy for colon cancer, my British or South African cancer doctor in New York City all but shrouded me in sheets as he readied to examine why I’d be in pain “down there.”
I borrowed those last couple of words from the “Vagina Monologues,” a pro-female theatrical production that has more euphemisms for vagina than my locker room buddies had for the punch-lines for their prideful penile jokes.
The doctor’s discomfort should have been a clue that he wouldn’t deal well with male potency questions. My wife, who has developed admirable boldness on our behalf, inquired whether chemotherapy can be related to a lack of optimal male function “down there” when it comes to matters of love and marriage rites, celebrations and mitzvahs.
He did a double-take and started mumbling about sex therapists.
Perhaps I should ask Bob Dole to have a talk with him.
Bob Dole is the former U.S. senator and 1996 Republican candidate for the presidency of the United States who has a sonorous voice, refers to himself in the third person and has been a poster dude for erectile dysfunction.
A funny one.
Much more at ease with the topic? One of the nurses at my Kingston cancer doctor’s office who quickly and easily acquired a legitimate Viagra prescription on my behalf.
The pharmacy wanted to know if I wanted it right away, or if I could wait. I started to say I could wait until the next day when the employee handed me a longish device that immediately started to vibrate.
It is a version of a paging tool some restaurants and service businesses use to let customers know when their order is ready, so they don’t have to remain within a few feet of the counter awaiting their order. She had set off the buzzing function so I’d understand its intended function.
Looking at this hard plastic (buzzing) paging device in my hand I assured the pharmacy worker that, while the tool could be helpful to me in my situation (If there were an on-off button) I would decline her kind offer. I promised to come back later.
That’s when the buzzing really started.
When I first picked up my new $20 bottle of Viagra, I was optimistic about, but when I got home and cracked the seal on the bottle I was appalled to see that the bottle only held four pills.
That’s $5 per pill and four blue-powered encounters a month. I checked with my calculator to be sure.
For a mere $15 more, or so, I could see an extremely experienced freelance sex therapist right here on Henry Street in Kingston.
Perhaps this is why the best local prostate cancer support group has taught its members other means of achieving greater stature. One is “the pump” and it was described to me by a very funny member of the group, a member who must have spent as much time in locker rooms as I have.
I can’t believe I just called him “a member.”
Still, he is not a flincher, and even demonstrated the device on several occasions (to a point) for some medical professionals who didn’t fully understand how the thing works.
I have no desire to participate in or witness any demonstrations, but I encourage cancer patients to participate as fully in their lives as they can. It may be funny, but it won’t be tragic as long as everyone involved has a sense of humor about whatever happens.
Since I’ve embarked on this blue-pill road, other male friends with varied physical “issues” have confessed their own troubles becoming upstanding participants in their own relationships. None were involved in any of the Henry Street busts.
None that I know.
Preventing unnecessary suffering
Sunday, February 15, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
It isn’t suffering that angers me so much as unnecessary suffering.
As I’ve been treated for Stage IV colon cancer these last four months — cancer that has invaded my colon, liver, lymph nodes and lungs — I’ve been repeatedly buoyed by members of my metastatic cancer support group who all but demand I look on the bright side.
Still, after I was chastised for uttering a morbid thought at a recent meeting, others in the group defended me and encouraged me to vent. Having a gutsy mix of middle-aged women, senior citizens and grandmothers speak up on my behalf helped me buck up, even as I mostly agreed with the first woman who criticized me.
The heartwarming debate reminded me that my words have impact on those around me and I don’t want to bring down anyone I care about.
Like script writers setting up graphic murders in dramatic movies, sometimes it is “necessary” to scare people a little to carry scary plots and justify subsequent over-the-top violence. I’ve done some scaring myself while trying to encourage others to get tested for all the forms of cancer that early diagnosis can help cure. Breast, prostate, lung and colon cancers are all so much easier to treat early on, before they’ve “left the barn” (the cancer’s organ of origin) as some blunt-headed doctors seem to enjoy saying.
There are free local colon-cancer screenings I plan to plug in subsequent columns, screenings that are almost certain to help detect cancers such as mine long before they move to the extremely menacing stages, where they hop-scotch from the colon to the liver and lymph nodes and beyond.
Early recognition of such problems could do much to prevent unnecessary suffering. That justifies a few ominous words that can be balanced with the reassuring odds on happy endings. But only if you act NOW, as so many infomercial hosts insist.
During treatment, there are also steps that doctors, nurses and patients can take to reduce senseless suffering.
I’m glad I now take my blood thinner via syringe, a sometimes painful “prick” that I administer under the skin of my stomach each mid-afternoon. Initial talk of switching to the newer form of blood thinner was focused on preventing the strokes that run in my family. When I realized it could also reduce or eliminate some of the internal bleeding that was making trips to the toilet a bit of a red-tinged horror show, I spoke up loudly enough to get the new injectable medicine, called Lovenox, to do double duty and help me in both ways.
Since then I’ve had only a bit of bleeding, and the drug is clearly more effective in my case than Warfarin, the old-school (cheap) blood thinner that I had been using. While it has been and will continue to be a life-saver for many, the thinner (derived from rat poison) had my blood viscosity levels bopping all over the graph, usually firmly in the “clinically ineffective” range.
Had that switch been made months ago, before I went to Florida for a warm escape from all this mess, I would have enjoyed my getaway much more.
The initial treatment hurts more than a pill, but I just remind myself that many a pre-teen has injected himself or herself with insulin daily while fighting diabetes. They’ve earned my respect.
The daily injections hurt one out of three times, but I’m getting better at lowering the pain factor. And the knowledge that the spike of pain that often comes with the injection will prevent more frustrations later makes me feel like more of a participant in improving my quality of life.
And it may make me less grumpy.
In the last two weeks I have not sworn at any other cancer patients while fighting for parking spots at the oncology center. I quickly admitted a minor mistake I made while trapped between pro- and anti-war activists during a story on Grammy winner Pete Seeger. And I’ve only used my disease as a flogging tool, once, when a colleague pressed hard for more certainty about the outlook of the newspaper industry and all our promised severance and vacation pay.
I told her with my outlook, health-wise, I too would like to know all such answers. No one, from supreme court justices with pancreatic cancer to non-smoking co-workers with lung cancer, can know for certain what the next one or two or three years will hold when it comes to their wellness. Similarly, no one with health insurance programs in flux working in industries that are in danger can make predictions with confidence.
With health insurance, we’re all trying to buy a little predictability and a little security against unnecessary suffering. Every now and then, I hear someone say the majority of Americans would be better off not having to buy health insurance that supports those pesky sick people. But lets face it, the majority of Americans do grow old and then they need health insurance. And if they don’t grow old, they especially need health insurance.
The current system is flawed, but if it is to be replaced it must be replaced with something better that does more to prevent unnecessary suffering.
Cancer talk good, bad and really ugly
Sunday, February 22, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
A colleague at work recently complained about his cold, and said loudly that I certainly wouldn’t want anything as severe as that!
“Don’t compete with me!” I told him, to some mixed laughter, mostly from those who have been following my cancer battles.
Those diagnosed with cancer usually experience a wild range of responses from friends, extended family and acquaintances. The colleague with the cold may well have been acknowledging my vulnerability to infection (something I haven’t yet suffered from) but he certainly was setting himself up for a punchline, which he took in good spirits.
I’ve seen lots of denial from most in my extended world —requiring that I explain again and again the severity of my condition. I was diagnosed with Stage IV colon cancer last October, and since then I’ve come across plenty of rudeness and compassion, intrusiveness and generosity. Fortunately, those with compassion and generosity have been a bigger part of my daily life.
Still, the rude and intrusive stand out so starkly that they deserve mention, at the very least.
I’ve talked with other cancer patients who also have been blessed with tremendously supportive family members or friends, but they too couldn’t help but mention those who seem to have grown tired of hearing about a “loved one’s” cancer. Just because the topic makes some people feel uncomfortable, doesn’t mean the cancer will go away. Some of us with severe cancers will win and survive well beyond depressing statistical predictions. Real friends and compassionate extended family members will learn to deal with that.
Or not.
None of us wants to be known only for our cancers, but for those of us with Stage IV, it’s going to be one of our top topics until it isn’t anymore. That doesn’t mean we won’t have fun and can’t be there for other family members and friends with troubles, but there will be limitations.
Of course, there are always those who are all too ready to jump the gun from the first day of diagnosis, and it’s hard to decide whether to laugh or punch when they do so.
One local artist, seconds after learning of my diagnosis, started talking with me about how a few years ago he inadvertently began a series of photographs of people he “captured” shortly before they died and how he’d love to include me in the series.
My wife is more likely to rip his throat out than allow him to “capture” his desired “pre-dead” image of me while she is anywhere near him.
Another artist, in a letter that was mostly flattering, just about knocked me down with his interest in celebrating my craft before I’m “gone.” He closed with “Thank you for your thoughts in this time you’re passing on.”
A local doctor who has been spending a lot of time honing his Spanish, of late, seems to have lost some of his command of spoken English. He stopped by my office to pay his “respects” a few weeks ago. While he was at it he was dropping off a letter to the editor, so it was a nice two-fer for him.
Until I checked the dictionary, I’d always thought one only pays respect to family members of the dead, and despite some small setbacks of late, I’m still very much alive. Even my geriatric Basenji (dog) seems to be holding on to his health, although he is still as likely as my fierce brown dog to sink his teeth into the legs of interlopers.
All this makes me feel oddly disconcerted so to have someone paying “respects” to me.
In other circumstances, this doctor has behaved more like a friend so I will cut him some slack — eventually. Only the “passing on” artist and the man looking to add to his “pre-dead” photo series are really in any risk from me or my extended family of defenders and devoted friends.
I know other cancer patients who have distanced themselves from “friends” who regarded their cancer more as entertainment and gossip fodder than something they were truly worried about.
To help me feel better about the tough moments, I collect tiny victories — like how I managed to get my own brothers and sister checked for colon cancer. Bigger “victories” have come from more distant friends, acquaintances or actual strangers who went ahead and got their suggested colonoscopies after my written encouragement. For that, I’ll put up with plenty of ill-mannered talk about my cancer that has been brought on me by this series.
And if someone actually gets an early cancer diagnosis because of anything I’ve written about the importance of cancer screening, I’ll be hard to keep down for more than a week. Especially if that early diagnosis comes in time to prevent the cancer from graduating to stage two.
A willingness to fuss for self-advocacy
Sunday, March 1, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Into every patient’s life, a million decisions must be wrassled.
Even choosing doctors can be daunting, and far too many variables can get in the way of getting the right person. I was once directed to a winsome chiropractor by several women who thought he was really attractive.
He couldn’t spell, however, even if all he was going to do was try to ease my neck pain that made me squirm. I know another patient who leans heavily towards a particular doctor not only because of her perceived ability, but because the doc likes to talk about knitting. This could have been a clever tactic on the patient’s part, as the patient soon managed to get the doctor’s e-mail address.
To get the e-mail address of one’s doctor is right up there — when you really need help —with getting the true identity of Deep Throat.
Answers just a click away? How great is that!
I’ve seen the same doctor, and I’m pretty sure I had faster access to her because I was a source of really odd gossip about one of the doctor’s social groups. Nothing unethical, mind you, but a potentially mind-blowing scoop for members of this group.
And I confess, I once chose to flirt with some charming nurses in order to get my cat and dust mite allergy shots with minimal waiting-room time wastage. One of the nurses wound up asking for relationship advice, on occasion, but she’d never actually accept the wisdom I offered.
I didn’t have to delve deep into my Love Guru persona for this. Male strippers have been shown to be less-than-solid friend material for women, even if they can do really amusing things with hot dog buns.
I’m not making this up. Documented by a colleague at a competing paper a few years ago, the stunt was a house burner. For those concerned about health effects? Let me assure you mustard wasn’t involved.
With my Stage IV colon cancer, I’ve found getting the best advice about my own care — and choosing the best tactics to achieve positive results — have made for some of the toughest moments of self-advocacy I’ve ever experienced.
As a Minnesotan, I was taught that unless your tongue is really frozen solid to the pump handle, you shouldn’t complain too loudly. If the bodily fluids you have available can free you, why make a fuss?
But now that I have a foreshortened prognosis, I’m willing to fuss, even if it is against my nature … or is it nurture?
To get me into Memorial Sloan-Kettering Cancer Center in New York City, one of my doctors told me to “drop” a name or two. People who “know” people get to see “people” sooner, he explained. It didn’t help, and now I’m uncertain whether the doctor I’ve ended up with there is operating in my best interests.
I’ve tried direct communication to get past roadblocks (like pressing a doctor who decided against returning the second call I made to him in all of four months). I was sent to a patient advocate who so far hasn’t gotten me many answers.
My wife sometimes calls and cries while trying to get me what I need.
It works better than my angry (but polite) white man tactic.
This troubles me even though her tears are sincere. She does get results, but it makes me wonder if I should be man enough to do the sobbing myself rather than relying on her salty advocacy.
Choosing how hard to press doctors when treatment seems to be going wrong can be difficult. I remember a new mom who told me that pediatric doctors and nurses prefer babies and moms who are responding well to care.
Cute baby, glowing mom equals solicitous health professionals.
I’m told my weight loss has helped me regain my baby face, but that’s not getting me very far. A good old-fashioned second opinion I went for last week may have scored me more progress than any I’ve seen in a month.
If this keeps up, I may well be much closer to being pain-free for more of my day, better able to gain the weight that makes my wife happy and thus much happier myself. She sees a little pot belly as a defense against the grim reaper. Who am I to argue?
And when I eat she smiles. Even if I still haven’t yet been converted to liver and onions we’ve made progress and that’s not a bad investment in my book.
Questions about equitable care should come up
Sunday, March 8, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Early in my junior year during college, I discovered one of my teachers was terrible. He was not the sort of person a student would want to spend months of his or her life with, absorbing wisdom — or anything else, for that matter.
Simultaneously, a classmate of mine made the same “discovery.”
Realizing we were in the last gasps of the period that allows students to drop a class and switch to another, we both sprinted across campus to the proper bureaucratic queue and each of us asked to join a more suitable class.
As a solid B student, I wasn’t expecting any special treatment, but I didn’t expect inferior treatment either.
“No,” I was told. I was locked into the class.
Yet my buddy, who had a classroom grade-point average closer to A, had some honor society status that gave him the “right” to switch classes much deeper into the school year.
We laughed about it.
The smart get smarter, and the dumb get dumber, yes?
Boy, weren’t we learning lessons about the world?
At the time it wasn’t entirely lost on me that had I raced to the student health center with my brainiac friend at my side to, say, get possible strep-throat cases checked on, I’d have left him in the dust of the waiting room.
Never mind I could have outrun him, I was too much of a gentleman to do such a thing.
Still, I could run a 4-minute, 11-second mile back then, so I was among the “student-athletes” who never had to wait for a doctor whenever a medical condition was in question. My letter-jacket was all the pass that was required.
Fair?
No, but the fast get faster.
Now that I’ve been diagnosed with Stage IV colon cancer, I’m more likely to be surrounded by cancer patients when the kvetching about inequity occurs.
I’ve noticed that with each celebrity diagnosed with cancer, patients with similar diagnoses look to see whether that celeb’s status gains them any more time above ground than the average patient. Did they go to Europe for some of the super-slow (and supposedly more-effective) chemo treatments? Did they have the advantage of more gene testing prior to treatment to ensure they did not waste time with medicines that don’t mesh with their treatment? Did they get that dream doctor at Memorial Sloan-Kettering Cancer Center in New York City that everyone recommends, but few get to see in person?
No one wishes ill on Supreme Court Justice Ruth Bader Ginsburg, except perhaps for U.S. Sen. Jim Bunning, R-Kentucky, but her pancreatic cancer case will likely be scrutinized, as has the case of actor Patrick Swayze.
Bunning infamously predicted Ginsburg’s death later this year, then apologized for his crudeness while misspelling her name.
Swayze has amazed some in the cancer community with his continued survival, more than a year since his diagnosis so far.
In both cases, the question of equitable care will continue to come up.
And it should.
And yet greater inequities go unheralded every day. A spectacular percentage of Americans still don’t have decent health insurance at all, and any serious disease could well throw them or their families into the poorhouse.
When health decisions are twined around family-finance issues, little good can come of the ensuing tug-of-war.
Recently, there have been peeps of support for laid-off workers bandied about coming out of the White House, with talk of aid for workers for post-employment (or in-between-jobs) health insurance. But the need is so great it is hard to see what sort of “quick” solution could possibly make a difference.
Looked for a job lately?
Even the health insurance provided by supposedly upstanding employers in the region is inadequate. Anyone doing the math when selecting between job offers will quickly notice that a “great” job offer can melt down to a puddle, when co-pays are factored in and employees calculate how the true cost of a single serious illness can add up over the course of a year.
When it comes to pharmacies, bigger may not be better
Sunday, March 15, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
I try to stay away from Wal-Mart, but when one of my doctors pitched a “new” time-release drug that was to reduce my frequent colon cancer-related flopsweats — all for $4 for a 30-day supply — I bit the bait.
I was wary about time-release drugs because a few weeks ago someone in my family had been given an immediate-release drug that was supposed to be time-release — as in “released over time.” It was instead written by her nurse as an all-at-once megadose that literally floored her.
In my case, I asked the Wal-Mart pharmacist to check if the medicine was prescribed correctly by asking her how long the drug was supposed to last.
After consulting her computer, the pharmacist declared: “two hours.”
That would be quite a bit less than I was told the drug was supposed to work, so I changed the way I asked the question. Rephrasing is always good when conversing with English-as-second-language folk. I told her I had thought the drug was extended release and that was the reason it was prescribed.
After a few moments of consulting her computer the pharmacist returned to me and stated – with authority equal to that of a moment ago — that the drug should last 12 hours.
What a difference.
If I had believed her the first time, there’s a chance I’d have taken six times the proper dose to keep my fevers down. Down, down, down, down, down, down. I could have been at room temperature by morning.
That one experience scared me enough that I decided from that moment forward all important drugs should be ordered from my friendly (independent) neighborhood pharmacist.
Sure, independent pharmacies’ medicines — in my case from Nekos-Dedrick's in Uptown Kingston — can be more expensive. But these pharmacists have been much more responsive and kind to me. Once, one of Nekos’ pharmacists chased after me to ensure I would not mix two drugs within a short period of time. Granted, I’m a bit slower now, so she didn’t have to do more than walk briskly to apprehend this shuffling perpetrator, but catch me she did.
The drugs weren’t even in the same day’s order, but the pharmacist remembered me and the previous drugs I’d ordered.
Would that have happened at Wal-Mart?
It makes me wonder how many Wal-Mart patients have been exposed to pharmacists’ misunderstandings, or taken overdoses of drugs. There was at least one such reported case, in Utah, last year. One 18-year-old Wal-Mart customer received so much pain medication — 20 times the proper dose — that he was knocked into a coma, according to a July 14 report by KSL TV, an NBC affilliate in Salt Lake City.
His recovery is incomplete, KSL reported in November, and his family has said he’ll need round-the-clock care for the foreseeable future.
Mistakes happen, but getting perspective on them can be difficult.
I’ve shared my local emergency-room visit problems with fellow cancer patients. An intake nurse at one Kingston hospital who couldn’t type, and an intake nurse at the other Kingston hospital couldn’t hear (much).
But that didn’t seem to bother my fellow Stage IV cancer patients as much as how a pharmacist could confuse a 12-hour dose of a drug with a two-hour dose.
I’ve never had trouble with Nekos’ staff, which has been courteous and attentive. One went to excess, back when I was healthy, complimenting how I looked in my red shirt. Confused, I simply paused extra-long and told her I still wasn’t giving her a tip.
I’ve read about New York Gov. David Paterson’s efforts to clip Medicaid reimbursement rates for pharmacies, and this is especially troubling for the independent pharmacies who don’t sell tons of Halloween food and cigarettes to help balance their books.
Forcing this work on harried chain pharmacists who are hurried beyond reason just doesn’t make sense, even when their English skills are tip-top. Budget cutting may be a wonderful thing, but without proper services to those who are sick, we might end up having some scary errors.
That wouldn’t look good on any spreadsheet.
On the good news front, more and more co-workers, strangers and strange co-workers have shared their colonoscopy stories with me. Many had waited months or weeks or years before following up on these life-saving exams and when they finally followed through, some of their doctors found small polyps, which were removed.
Small polyps can become big polyps that can become cancers that can kill, so when I hear such news I grin like a fool. It is no antidote, but it makes some pains dissolve.
Cancer tales scary, but necessary
Sunday, March 22, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
This cancer thing is still frightfully new to me, and jumping into the contest with Stage IV colon cancer last October did not make things easier. Most people work through a few cancer stages before they get to the one where cancer has moved beyond the organ of origin and is dancing through much of the rest of the body.
I’m still learning the lingo. My vocabulary did have a jump-start because of all the cancer reporting I’ve done for the Freeman. It helped to have a small collection of jokes to start out with, as I decided to write about what Stage IV cancer means for this 44-year-old.
Inspired by others with metastatic cancer, I’ve listened to them say they are not to be defined by their disease and wish to be seen as more than a breast or lung or colon cancer survivor. They still need to talk about what they’re going through (mostly in the support group) but they also want to talk about sports and politics and show off photos of grandchildren and nieces and nephews.
Me too, although I’m only up to one niece and two nephews thus far.
Sometimes guests will visit our home and just about all they want to talk about is cancer — or so it seems. I’ve occasionally set up cutoff signals that all can agree on before we even get rolling to be sure. Still, who would want to be the first person to invoke the “enough-with-the-cancer-talk signal?” when everyone else seems to enjoy the kveching or knee-slappingly good stories about stool softeners and iron supplements!
That was sarcasm, there.
There are cross-over zones between diseases and support groups I’d like to tap in future columns. Complaints about medical misunderstandings with doctors only take up portions of our sessions, contrary to the fears of MDs. Many of us really like our doctors.
That said, so far, none of my cancer compatriots have come up with an equation for how many annoying characteristics to accept from docs in exchange for a medical professional with an obvious grasp of what may well save our lives, or simply make us comfortable for more than a handful of years.
A really good car mechanic may be the best possible choice for fixing a sticking valve lifter, but if you walk away feeling ripped off you still won’t want to return to that garage again. Applying that standard to an oncologist probably is foolish.
If an offensive doctor seems to be giving the best possible advice for sticking with a chemo regimen — despite a mixed bag of news, with some organs doing better than others — accepting that advice can be really difficult.
I am working on how and when to accept advice, and getting ready for the inevitable time when alternative medicine delivered instead of “western meds” will start to lure me like a semi-toothless carney at a county fair.
I resist!
For now, I’m working on new signals my loved ones can give me when I become a party-killer with my latest morbid story.
I remember a friend asking if I could tolerate an ex-girlfriend at a gathering. He asked how he should know when we should leave. A covert sign, perhaps?
For my secret signal, I suggested any nuggy application (nuggies are headlock-enforced knuckle rasps across the scalp) that last more than 15 seconds.
So if you see my wife jumping up to grab my head and pressing her knuckles into my scalp, you’ll know I’ve told one colon-cancer anecdote too many.
But seriously, violence only is sometimes the answer.
Support groups are far more effective. I know some people are frightened away from them because of the potential for sad stories — and that is a valid concern — but no one in any decent support group will expel anyone for anything but truly dire offenses.
And no one knows cancer like cancer patients. They are truly supportive and the sad stories are punctuated by some really funny and heartwarming stories.
I don’t think I’m violating any powerful bans on support-group gossip to say that this week my support group lost one member to cancer. Another member — my favorite — has moved into a hospice.
The news she was fading hurt like hell. Had I not exposed myself to the potential of that pain, however, I never would have experienced her wonderful qualities or been the recipient of advice she offered at just the right time to keep me up and moving in a positive direction.
On Martha, gene testing and ‘melting’
Sunday, March 29, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
A few years ago, I unsuccessfully tried to connect with a Martha Stewart food professional for an interview. The food pro is a Hudson Valley product and would have been a great interview.
Unfortunately because of some unrelated legal wrangling Stewart was going through, all of Martha’s people were locked up tighter than a case of partially emptied molasses bottles that had been micro-waved well beyond molten (for ease of pouring) and then re-sealed for far too long for any of those kitchen wimp to re-open.
I kid.
Right now I can’t open a third of my pill bottles without swearing at the default “child proof” bottles from my least-favorite mega store mini-pharmacy.
This column is partly to prove the life section hasn’t always been dominated by self-referential (and insufficiently other-helping) cancer stories by cancer victims.
But still, HOLD ON. This Martha thing relates to this particular series also and leads into a new trend in matching cancer drugs to patients.
At the time of the aforementioned Martha-related incident I was trying to write a Q&A chef feature that had become popular on our Wednesday Life page. I even tried to sneak around past the flacks (also known as public relations professionals) but it became clear that because of Martha’s “troubles” my potential subject was forbidden to communicate with me without a flack as an intermediary. Public relations people have trustworthiness issues.
If they help us and their spinning is lighthearted and doesn’t really get in the way of real news, journalists often like them. If they get in the way, however, we sometimes treat them like... cancers.
Anyway, the sting from this attempt to reach one of Martha’s chefs faded when I managed an enjoyable in-person interview with a former Martha Stewart Living staffer who moved on to do magnificent gardens at Montgomery Place. It is as close as I’ve had reason to get to the maven of all things “living.”
Overdone? Excessively appointed? Jailable?
Martha!
Now I know I’m being a little harsh, here. Jailable isn’t even a word.
I pledge to turn the page on Martha. Tomorrow.
In fact for days, now, I’ve been all about “the Martha product” – at least the one she did jail time for. It wasn’t her extravagant ways or her heavy use off heavy cream that got the best of her, it was Martha’s stock market gambling on the anti colon-cancer drug Erbitux in 2001 that finally sent her to jail from October 2004 to March 2005.
“Insider trading!” her accusers insisted, with effective proof.
“Bla, bla, bla!” her lawyers retorted, with ineffective rejoinders.
I don’t care at this point. I just hope this really works on my cancers, in conjunction with another standard therapy I’m now taking intravenously. My new Boston doc has suggested this new regimen might make my tumors “melt like butter.”
Hey, there’s a marketing strategy that could work for Martha if she’s ever desperate enough to combine her proclivity for rich cooking with her Erbitux problem.
Erbitux — also known as Cetuximab — has become more relevant today now that a new “KRAS” gene test seems capable of determining which “wild” or “normal” colon cancer patients are likely to be best helped by the drug. It has added another drum roll of tension to the disease, as a third of colon cancer patients must be told they have mutant strains of the cancer that the drug seems to be ineffective for.
I’m told there’s some debate regarding whether Erbitux may still have some effectiveness for even “mutant strain” carriers, but that’s a pretty moot argument if insurance plans opt out of covering the expensive drug.
And I know a cursory reading of the studies show only temporary tumor shrinkage with this regimen. The months-long positive stories don’t sound quite positive enough for me. But then I remember that’s an average. Some people get more benefit from the drug combination, and some get less.
It wasn’t until this week that I learned I passed the KRAS test. The news was long awaited. Much breath was held.
I’ve learned similar gene testing may help others looking to better target their particular cancer strains with appropriate care soon. I define “soon” to mean “soon enough” to actually help people living with cancer today and I’m crossing body parts.
Like I’ve said, anyone who has more than a handful of friends or family will be touched by cancer. If they don’t get one of the many variations, one of their friends and/or family members will. In a snap, these advances will seem crucial to them too.
Like anyone with a serious illness, I needed this good news this week.
Don’t we all need to see the worst parts of us “melt like butter?”
I’m getting sleepy as I write this. Did I remind everyone to get their screenings? Remember, nuggets of butter melt away better than small pats of “butter.” When you get to whole sticks of the stuff and doctors start to talk about popcorn-like cancers in your lungs, you may find yourself praying to Martha (or a real health professional) as well.
Right now I can’t even eat popcorn, but this is making me hungry.
A good sign.
Weight loss woes return in cancer battle
Sunday, April 5, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Many cancer battles are repeat fights that cancer patients must engage in, often on a shifting landscape where “rules” are altered by the hour.
For me, even keeping on weight is a daily contest. It is one I thought I’d won months ago when I succeeded in building up a margin of fat reserves that cancer experts say can be helpful for patients with Stage IV colon cancer. Now in addition to frozen pizza — which sometimes seems to taste better than takeout for some reason — I’m on to canned meal replacements that I use as supplements and a whole lot of dried fruit and stir-fry steak and pasta with seafood.
My last successful battle with weight loss had left me somewhat complacent. I figured I’d scored a victory after putting on 10 pounds. I don’t have to look at myself in the mirror that often, however, so my subsequent gradual weight loss struck those around me more than it did me, at first.
Which led to other sorts of battles at the dinner table, when I didn’t clean my plate or forgot to eat breakfast. Few foods appeal to me these days.
Desperate, my wife found a supplier of decent off-season eggnog that you’d think would have solved all my problems. There are 12 billion calories per cup of eggnog, after all. But digesting dairy isn’t always easy, for someone whose stomach has been altered by medicines powerful enough to peel the nail polish off Satan’s claws. I was glad to hear from my Poughkeepsie gastro-enterologist that Lactaid- type pills do actually help with dairy digestion (although he had little to say on the claims made by the Beano people.)
As any parent knows, the seesaw of constipation and loose bowels can be frustrating when dealing with children. Certainly seeing a child in pain can be gut-wrenching. When it is your own intestines that are in a twist, however, things are different.
While a parent may carefully log every medicine they administer to their child, along with the whens and hows, self-medicating takes a different sort of discipline.
The chemo meds I’m now on trigger boom and bust cycles in the bathroom that don’t bear too much detail in a family newspaper. Then again, I hear some of the most popular children’s books on the market lately have to do with farting dogs and poopy pants. Still, I don’t think I’m targeting such a crossover audience.
I hope.
I know family members are wary about sharing my columns with my young niece and nephews and I can understand that.
Pamphlets accompanying some of my new chemotherapy meds have warned me away from fattening and fried foods on the days of infusion. I just wish they’d say why pudding and even yogurt might counter my current regimen on those specific days.
I’ll be seeing my Boston oncologist again in a few weeks and plan to grill him (with questions) about some of this stuff. For now, each day’s problems are solved one at a time alone or with e-mail stomach-tech support. Fortunately, this doctor has an assistant who is available with quick advice about how to administer soothing meds at almost any hour of the weekday or weekend.
When it feels like your stomach is twice its normal size and pain levels are climbing, it is too easy to grab for inappropriate “solutions” that can themselves cause other problems.
I try to give myself pep talks that such pains are fleeting, as I’m sure other cancer patients do with all the suffering that comes with treatment.
Just as when talking to someone suffering with depression, however, it is sometimes hard to accept that pain (or the fatigue caused by chemo) will fade and offer a window of normalcy before the next treatment. Give it a little time, I tell myself, food will taste good again and the air will be sweet.
Gripping onto the positive isn’t so easy, of course, especially when I’m warned against irresponsible hugging or consorting with those with sniffles. Twice, now, my white blood cell counts have dipped lower than is “healthy” for fighting off disease. I’ve been given shots to boost those fighting white cells, but even those shots cause deep bone pain.
But no hugs? A squeeze is a natural antidote to so many of life’s stressors. And no kid contact while my counts are down? Those little germ bags (as some docs call kids) can do more to lift my spirits than just about anything. Still, I respect the rules.
And I celebrate spring. I’ve already had several pleasant outdoor walks where I was able to soak in some sunlight, manufacture some vitamin D and score some solace while trying to boost my appetite. I even got a little sunburn by mistake after only a brief walk.
That was another side effect that I wasn’t warned of (to the best of my chemo-addled memory.) Colleagues who were tired of seeing my green face were so thrilled at the change of hue that I may make a steady practice of getting my face a little toasty.
I’m not worried about skin cancer.
Facing the attack of a side effect
Sunday, April 12, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
This cancer thing has connected me with fighters of all stripes.
Anyone with irritable bowel disease (my first mis-diagnosis) knows that we may as well call it idiopathic bowel disease. Idiopathic is a nice way to say we’re idiots when it comes to figuring out what causes the cramping, painful diarrhea and constipation in our bowels. Throw in bleeding, and a colonoscopy is usually mandatory, because with a “scope” it is usually possible to see if there are obvious signs of cancer, or not so obvious polyps that can often turn into stage II, III or the stage IV cancer I have.
Even if they don’t have cancer, those with irritable bowel disease can identify with some of my constipation issues. I mentioned to a colleague that iron supplements can cause constipation, but that was probably more than he wanted to know, I added.
“Actually.... “ he said.
Stool softener is pretty cheap and it can be your friend.
A colitis patient needed no advice when she approached me, just that she wanted me to know I did not need to whisper the words diarrhea or constipation because a lot of us have one or both for a bevy of reasons, but we suffer too often in silence (except for when trapped on the toilet.) Colitis is an irritation of the lining of the intestines and bowels that can wreak havoc with eating, but that, too, can be treated. Sort of.
Now with the acne side effects of my Martha Stewart drug, Erbitux, I can either double as a “narc” (a youthful-looking undercover drug operative) or a poster child for “redness relief Eucerin”-soothing cleanser. The prescription-only Clindagel, an antibiotic ointment, seems to be helping damp down my pizza face. Lotion with a sunscreen also helps keep my nose from looking like my dad’s.
“Pizza face” was what they used to call the face-pocking acne that helped ruin plenty of proms, dates and school days for many of my classmates, and those of my brothers and sister back in Minnesota where I grew up.
In my case, acne is one side effect my cancer doctors can point to as an indicator that my colon cancer (now spread to my liver, lymph nodes and lungs) is vulnerable to the drug Martha spent luxury jail time after being found guilty of obstructing justice and lying to investigators in a case related to the drug.
But back to immaturity.
I now find myself staring in the mirror like a 13-year-old waiting for the next eruption that will draw the eye of the next person I interview in person. Television infomercials have looped countless teens and hormonal young adults to buy Proactive (expensive) skin care products because of this eye-contact thing. The smart kids and parents have gone online to research the off-brand stuff that can do almost as well.
Others distract from their zits with low-cut blouses or Axe (a manly deodorant so strong it can make anyone’s eyes water long before they spot any new pustules).
As a youth, I was considered one of the lucky ones, having but a few deep acne blips to mar my otherwise blushing teen face. My wife and her highly educated sister still call them pus-jewels. But they have taken enough sympathy to keep their thumbs away from my whiteheads. I can still run faster than they can.
My sister-in-law credits my wife with the invention of the word “pus-jewel” but I’d bet on at least a little parallel development out there.
My siblings, two brothers and a sister, were not passed over by the scourge of acne like I was as a teen and they now admit they sort-of resented my clear teen-aged skin.
And have I mentioned the good-looking mailman took a hit, too? There were jokes he was my real father since I looked so little like my brothers and sister.
I don’t know if my new skin cleansing, antibioticicizing and soothing routine will keep me free of jewels of pus for long, as more of the Erbitux works its way into my every pore, but I do know I’m not cutting back anytime soon. Some patients are so dismayed by the “cure” that they scale back or eliminate the Erbitux with the support of their doctors.
I’m sure the youth of America have come up with something more clever than “pizza face” by now, but I am a little wary about asking.
But there is payback for use of such vocabulary. I noted that those who mocked others for flaws they had little control over often lacked imagination (and the few smart guys needed to help them with their homework to boot).
Wigs and head wraps are fine, but a little dermatological advice can also go a long way towards making treatment less frustrating. I credit the swift e-mailed response my Boston doctor’s assistant sent my way within minutes of my skin-related questions for some of my newfound comfort.
With support like that, retreat seems silly. Besides, my new intravenous regimen is supposed to (perhaps) make some of my cancers melt “like butter” and this morning I feel pretty darn good, despite a dearth of sleep. That means about 6 hours in a recent night’s case, partially a result of one of the anti-nausea drugs I’ve written about (Decadron) that keeps me semi-alert at all hours and partly because these life-and-death (and funny-face issues) weigh on the brain.
Hence my irregular reminder. Get your mammograms and pap smears, accept the digital rectal exam and weigh the odds on why you may want to take the prostate-specific antigen test. Look for irregular skin lesions and try to get in to see a dermatologist before they take over your body. And get your colonoscopy exam as early as the guidelines suggest, and earlier if you have rectal bleeding. Give your doctors a chance to smile and tell you they caught something early!
Early is good.
It bears repeating. Early detection is good.
Many firsts in battle with colon cancer
Sunday, April 19, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Cancer diagnoses, no matter how minor or dire, involve many firsts.
Small sarcomas — skin cancers — seem like no big deal, but for first-timers they trigger many of the same initial feelings of mortality that major cancers set off. Will I be disfigured? Will the mere word “cancer” cause friends family or potential employers to fade?
There is a range of fright that factors into each diagnosis, each with specific lists of “firsts.”
Prostate cancers, barring the fast-moving varieties that are ill-diagnosed and poorly cared for, are not actually that virulent. Depending on how long it takes to get to the proper treatment, however, such cancers can be devastating. It takes patients some time to realize their poor diet or heart or stroke ailments (or aggressive driving) will likely kill them long before the cancer. Bad jokes at the expense of long-suffering wives can be killers too.
Especially in cases of wives driving over husbands, news accounts should detail what the men did in the years or months prior to the incidents. I want to know more about her side of the story before she is convicted on television.
But good guys with prostate cancer neither deserve impotence nor incontinence or drive-overs. The first two situations are more likely “firsts,” but not if patients and doctors work well together. Initial fears of wet pants may push men into procedures that leave them limp but without man-diapers. The opposite approach can be more deadly.
Women diagnosed with breast cancer have some related fears. Will their husbands or boyfriends or lovers love them on all levels or will they look away?
I know a woman union organizer who “educated” her doctor that he shouldn’t simply “go in” with his tools to check out her breast lump and then simply remove her entire breast if enough bad stuff were found.
This organizer —who has been telling high-powered men they’re full of feces for a lot of years — asked the doctor how he’d feel if told that if a little nodule mixed in with his manly parts turned out to be cancerous, upon surgical investigation and that a team of highly trained professionals would simply peel back the skin in and around all that junk between his legs and cut and cut and cut until they’d removed anything suspicious.
Upon waking? Perhaps he’d have a tube and a neat scar but no cancer!
OK?
Not OK.
I think that was a first for the doctor, and many of his past patients probably would have enjoyed witnessing the moment.
The union organizer has been a survivor for some time, so the details fade. I do know all she wound up with was a small scar covered with a small rose. I don’t recall if it was a rose of Texas, where she developed much of her no bull-feces manners.
On the assumption that bad manners can sometimes trigger bad outcomes, I’ve reviewed my occasional bluntness to rude or inane people in the course of my work. No surprisingly, I decided I was almost always in the right during such conflicts. Besides, I don’t really think readers are served “news” that only serves the person pitching it to the reporter.
Even those with family members who died of cancer have attempted to push me into annual stories about the same subject with no changes to my work but the addition of “second annual,” “third annual” and “fourth annual” part of the name of their benefit. Rather than adding points of interest, they added threats that they’re friends with those up the food chain at the paper.
Niceness has been lost, it seems.
But it works. Try it, even if it is a “first” and especially if you are trying to stay alive in social work or a medical field.
I’d venture niceness is a valid clinical tool. A single upbeat conversation can turn around an entire day for me, even if it happens as I’m simply scooping poop as I walk my dog. That positive mood can then withstand one or two or three assaults of stupidity, as I try to spin the bad to the good fortified with this positive feeling.
My recent trip to Boston to get a checkup with my new doctor was mostly upbeat. No test results, just positive people who smiled sincerely and gave me more tips on making my therapy work and working on ways to pay for it into the future. It was preceded by some line-butting bitterness that Massachusetts transportation authorities set off by not scheduling enough employees on Easter. Folks headed to family were delayed by as many as 7 miles of toll traffic at points.
The positive people at Mass General helped me with enough niceness to overcome the toll battles — once I got there. Still, I spiked a fever that the drive stress may have helped trigger.
One smile — even a tired one — can do more good than an hour of solitary creative visualization and I wish more medical folk and patient families and co-workers would exercise those muscles. Besides, my creative visualization usually involves what should happen to the doctor who didn’t have the patience to direct this patient to a colonoscope four years ago after told of stomach pain and bloody stool.
Stool is... never mind. If you have to ask, you must be one of my nephews or my niece who should stick to reading children’s books about Mr. Poopy pants rather than my articles, at least for now. They’ve been great, if a little afraid to hug me. I used to be able to flip all of them on their heads, and give my own “little” younger taller brother a full body spin and set his then-230 pounds back on his feet. These weaknesses are more “firsts” for me.
My bro is probably grateful to stay upright, but I caught a look of disappointment in my elder nephew’s eyes when I told him I couldn’t bust a gut for him when I last saw his fast-growing form. He’ll clear 6’5” and then some, eventually.
Even the port that allows chemotherapy into my blood has triggered grimaces. Although under the skin, it pushes up like stack of six dimes, but there’s nothing scary about that.
My latest treatment, an infusion of type-O blood, took hours but was explained as a lower-risk procedure than the shot previously given me to boost my red blood cell count. But first, I was asked to list all that was wrong with me before they’d give me help, although my thick file had all my details. For me, blandly listing the cancers in my colon, liver, lymph nodes and lungs felt like a run-through of nails in a coffin I don’t want. Either.
Burn me, baby, burn me.
But until then, a smile or two and an easy conversation when I’m not too hard at work is more important. In four weeks I’ll have another scan to see where my cancer has grown or shrunk. Right now I breathe easier so my lungs and/or liver must be doing better. Much of this is guesswork.
I do know some more good weather is supposedly in the skies to come and I hope to take my brown Labrador mix to the dog park and throw a stick into the Hudson for as long as I can throw or she can withstand the cold water. Dog smiles and kisses are worth a lot, even though, for some reason, no double-blind, placebo-controlled studies have been completed to prove that.
This one I can take on faith, and it won’t be the first time.
How’s that for spirituality and faith healing?
Now get your stool sample, colonoscope, mammogram, prostate exam and any other checkup your doctor has hinted at. I’ll be writing about free options as I find solid information and sources. Trust me, God would approve, even if you had to pay. Lifelines come in many guises, so pay attention.
Sometimes stool is just a lot of stool
Sunday, April 26, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
There are reasons why diagnoses shouldn’t be made from afar. It’s too easy to take a collection of symptoms and come up with more-frightening scenarios than justified.
I hope.
When told by my wife that I was going through a phase where abdominal pain was making it hard for me to eat more than a “couple of bites” of food at a time, my Boston doctor’s nurse practitioner responded to the e-mail by saying it was “probably” the colon cancer that has been swelling in my liver and environs that was responsible.
And how sorry she was.
With first-hand access to my abdominal pain I can say with some assurance that her assumptions are premature. Some of the “referred pain” from my liver has faded with my chemo. I’ve finally been convinced that a pain in one part of the body can show up, or be referred, to another.
I’m also convinced it is far too early for anyone to give condolences.
As I’ve told many of my own friends and readers, lately, I’m just full of s—-.
Winston Churchill (one-time WWII prime minister of Great Britain) once said when informed he was drunk at a social occasion, that yes, he was drunk. But come morning, Churchill retorted, he would be sober and his insulter would still be “ugly and disgustingly fat.”
This morning, as the sun comes up, I remain sober and after my stool softening medicine has completed its work, I will no longer be full of anything.
There will be nothing but the Ensure Plus and the Miralax and orange juice my wife has stockpiled for me. Miralax is a gentle laxative that doesn’t produce gas.
We both have appreciated the nurse practitioner, as she has helped us before. And we both accept the remote diagnosis was made with the same genuine concern this woman has shown us throughout.
But I contend (with the optimism I’ve been accused of lacking) that things aren’t nearly that dire.
Not unless one fears occasional and uncomfortable and excessive stool. Dookie. Number two. Monkey zoo ammunition.
When I was a kid we used to visit a zoo that had a glass-enclosed monkey house. The monkeys apparently didn’t like being stared at so they’d throw their feces at passers-by who were staring at them through the thick glass. The guys who had to clean up after them would then run around the enclosure and hammer on the glass to discourage such brown-smearing activity.
In my case, I have never hurled any human byproduct at anyone. As a youth I was once wrongly accused of leaving a really huge stool sample in the boys’ shower-room. Although a youngster, my defense was pretty scientific.
I was 9-or-10 years old, and although I’ve always been a little advanced in certain departments, the string of feces in question was HUGE. I explained to the very large man who accused me that HE might be able to birth such a whale, but not me.
Until recently, I’d never heard of the so-called poop terrorists who afflict the corners of restaurant bathrooms and department-store dressing rooms. Later, I did learn about them, when I spent a hard-working few years cleaning bathrooms and (after hand washing) cooking thousands of chicken corpses for a Kentucky-based operation.
Early on in my stage IV colon cancer diagnosis, I was told chemotherapy will mess up one’s guts — and I’m still adapting to that, not giving up. I’ve used four different stool softeners and have eaten a mountain of prunes.
Just typing that word made my stomach rumble. But I’ve come to terms with dried fruit. With a small sprinkling of sugar, that medicine goes down just fine and beats the buck out of suppositories and bottles with nozzles.
Remember the non-sexual bathroom scene from the 1983 film “The Right Stuff?”
Dignified.
Miralax has been more consistently helpful. And in a moment I’ll down my pre-breakfast-breakfast glass of Miralax and orange juice that was so lovingly prepared by my wife.
Co-workers, too, drop me fruit and snacks during my work day, proving that newspaper people can make for such compassionate people, even if they do need to chase fires and crime scenes and alleged perpetrators who police officials trot out for photo-ops.
It is enough to make a person optimistic.
Depression ‘appropriate’ sometimes
Sunday, May 3, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Advocating for oneself is never easy when cancer shows up, seemingly out of nowhere. That’s partly why it is priceless to have a person who is willing to crack heads and get results on your behalf.
After a bad experience with one of my HMO’s nurse advocates, I was successful in “firing” her buttocks, from my case at least. She did not seem to know what benefits were owed me, but most of all, she was upsetting my wife with confusing contradictions.
I don’t deal well with people who upset my wife. It makes me mad, and that doesn’t necessarily make me more effective a communicator.
The good news is my wife has risen to the occasion with alternating assertiveness and sweetness.
She has worked closely with our new HMO nurse advocate, charming her when necessary and being tough during other crucial moments. She helped get me approval to get Ensure Plus, a high-calorie nutritional drink, covered by my HMO. This after my pharmacist and others did not believe I’d be eligible.
She also scored a referral to a doctor at Massachusetts General Hospital, which was a big relief as our experience with Sloan-Kettering Memorial Cancer Center in New York City turned out to be discouraging. And despite his status as the over-booked head of oncology at the Boston hospital, she got me into the new doctor’s office in short order.
I encourage patients with connections to see if they can get advice, at least, about who they might see if actual appointments with the “number one” specialists are impossible.
A dear friend once gave me a list of the best doctors at one facility, but then went on to say it was doubtful I’d be able to get appointments with any of them.
Letter and e-mail writers who have sent me notes have done much to improve my mood, especially during these last few weeks as I’ve fought depression. Many of them congratulate me on my spouse selection.
Among the best e-mails was one from a man who told me he helped facilitate change by forwarding my columns to someone who was being bullied by her “alternative healer.”
The alternative healer, in this case, blamed a leukemia patient for not being “ready” and having a “bad attitude,” and that’s why she wasn’t responding to treatment. The leukemia patient facilitated the best possible change I can imagine and fired the “doc.”
Similarly unhelpful, for me, was a therapist who told me my desire for sleep was a classic sign of depression.
It took me a week to strike back and inform him that a need for sleep is also a classic sign of Stage IV colon cancer. Mainly I was upset it took me a week to deliver my come-back line.
That isn’t to say I haven’t been a bit depressed.
It reminds me of a good friend who really needed to hear (from me) that depression is sometimes the appropriate response to a situation. He is doing quite well, now, having pushed his way past the awfulness that was getting him down.
I am now trying a common anti-depressant, counting down the days until it is supposed to start working. Most of these drugs take some time to kick in, and this one has a 30-day delay before I can expect to feel much more chemically chipper.
For my depressed friend, it took years and plenty of faith that things could get better before he saw the light. He is among my most bitterly optimistic buddies, and I appreciate that.
In my case, I know things will be better sometimes, and worse at others. I just need to embrace the good when it is there. On the downside, I really know the meaning of “flop-sweat.”
The upside?
I have come to learn more about the meaning of friendship.
People whom I helped as many as 20 years ago are coming back to pay off favors and help my wife clean up our garden. And to cheer us up. And to fix things around the house. And laugh at my bad cancer jokes.
Good walks, talks part of ‘bucket list’
Sunday, May 10, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
I am considering creating a “bucket list” of things I want to do while strong enough to enjoy them.
But I have questions I thought I could get answered months ago upon hearing of a class that focuses on such choices. A closer reading of the course description, however, showed it was more philosophical than my current preference.
So back to the (kick the) “Bucket List.”
First, what’s with these dozens of virgins? Do you have to be dead first? How could I be sure they weren’t abused or fed bad food en route to me. Is there some “free-range” tattoo they come with?
In the 2007 movie “Bucket List,” a couple of dying coots embark on a series of quests for mountain tops, exquisite food and adventure. Perhaps the association of terrorists with virgins was too much for them to address.
More annoying, neither “Bucket” stars Jack Nicholson nor Morgan Freeman really ever looked sick. In real life they probably have really good health plans so they probably won’t go through much of what I’m going through, Stage IV colon cancer. Couldn’t they have skipped a few meals before important shooting days, though?
Batman/family feuder Christian Bale and Daniel Day-Lewis (that guy from “The Last of the Mohicans”) are the only two male actors who come to mind as men who starved themselves for their art. At one point I became alarmed enough at Daniel’s weight loss to ask his wife, Rebecca Miller, during a 2005 interview what it is like to live with someone who seemed so intent on physically disappearing for his role in her movie “The Ballad of Jack and Rose.” No comment.
I’m afraid to find out how many pounds of tumor I’m carrying. That’s the sort of number you only want to hear after it has been removed or shrunken, somehow.
Last weekend my wife and I visited with my vacationing brother and his wife in NYC. We didn’t do too much adventure-wise, but it was nice to catch up on family stuff — the sort of thing on my vague bucket list. When my brother was born I was 7 so much of his childhood was during my first years at the Freeman. That meant I missed a lot of his stories.
Travel will likely be a small part of my bucket list. I find the world travels I spent so many vacations on fulfilled much of that sort of itch, although I wouldn’t mind some quiet beach time (cliché alert.)
With my wife, I’ve seen: Wales, London, New Zealand, Fiji, Mexico, Tanzania, Tunisia, Sicily, Canada and Duluth (hey that’s almost international).
For my work I’ve done: trapeze, hang gliding, local mountain climbing, I’ve interviewed stunt pilots while (relatively) high above the earth, managed not to completely muck up a Cessna take-off and starter-class flight at the local airport and interviewed a (clothed) female artist as she showed me video of herself naked and wobbling.
Just where are you supposed to plant your eyes during such a conversation?
I don’t just do cancer. I look forward to more of the interviews with fascinating folk that has made my work life enjoyable. So far some have been operators of religious-based soup-kitchens or food pantries, nature-loving members of the New York State Department of Environmental Conservation or the Hudson Riverkeeper organization, musician-activists like Pete Seeger and Dar Williams and scientists like the Mohonk Preserve’s Paul Huth.
Seeger is still immersed in music and politics and is only slowing now at age 90, and Huth has watched the weather and documented decades worth of the climate change that has our region full of circling vultures year round.
I guess it was just two summers ago I interviewed Herbert Rogers, who served as a pastor at the Christian-based Transformation Life Center in West Park. I had no idea we were simultaneously suffering from the same disease, his simply more advanced. He died in 2007.
He had chosen a path with virtually no treatment, something I fear he was pressured to do because he lacked health insurance. I do know he seemed comfortable talking about his own death, except when it came to family members he’d be leaving behind.
The family member part we agree upon, at least.
Part of my bucket list has been to make that part of my story as positive as possible. Seven months post-diagnosis it is impossible not to talk about death, just as it would be irresponsible for doctors to ignore, or push for a lesser treatment when treatment can help with length and comfort in a patient’s last days.
In any case, I’ll be passing up on the virgins, and of that I’m sure Herbie would approve. Short walks along the Hudson I will persevere to continue, brown dog and wife at my side. The dog, for sure, will be happy and some of that joy still vibrates into my core as I walk along.
My countdown continues! My new anti-depressant should be doing its business in less time than it should take an average Freeman reader to schedule routine cancer-screening tests. They can catch cancer in early, treatable, stages nowadays. So go ahead, make your own day. Save your own life!
Imagination helps, except when it doesn’t
Sunday, May 17, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
The imagination can be a terrible thing.
Or a great asset.
I used to theorize that sleepless nights worrying about unlikely scenarios helped me deal with them when they came. The truth was (and is) that that dire outcomes are rare.
Rare, that is, until a person reaches a certain age, a certain weight and has smoked a certain number of cigarettes or shared a certain number of needles or slept with enough partners who have shared enough needles.
Before my diagnosis, I’d reached none of those benchmarks.
But now, burned once by my missed colon cancer diagnosis, I’ve worried about every ache and pain in my lungs, gut, liver, back, heart — and manly parts. Cancer has been found in five out of seven of those places.
This week, I received a call from the assistant of the doctor who I fired because he was afraid of my manly parts. The doctor clearly feared to see that which has been between my legs since before birth, something my wife and many a locker-room partner have seen.
I also fired him because he promised he’d return calls.
Plural.
Once, I called the doctor’s assistant about several worries the doctor could address. I had left word about my napping and waking schedule so the doctor could reach me. Sure enough he called when I was in the depths of sleep and woke me. He quickly brushed me and some of my worries off the telephone.
When I called back the next day with that other question I wasn’t prepared to ask when I was sleeping, he refused to speak to me until my next appointment. So his “promise” to return phone calls lasted exactly one call.
I was less than pleased. I didn’t have to imagine that I have Stage IV colon cancer and that I needed to have my calls returned, and I didn’t have to imagine that he’d said he’d be there with me every step of the way. I had witnesses.
Many doctors employ assistants who are able to easily vet concerns from their own hard-earned experience. If not, they often can squeeze in a question with the doctor and get answers back ASAP. This doctor did not seem to have that kind of assistant.
From well before puberty, we all start having questions about strange growths or feelings and we want answers. Some problems come from half-baked assumptions about why this would tingle or that would produce strange sensations.
Some schools deal with these questions simply and with grace, using basic information to put off worries for at least a few more years (depending on how sexualized the immediate environment has become).
A grizzled old Christian Brother with a peg leg taught most of my cohort sex education, so anyone can imagine how warm and fuzzy that was. Our text book was “A Boy’s Sex Life” and its cover was a young teen with a really big, silly grin.
Nothing in the text justified that grin, I can assure you.
Jump ahead 30 or 40 years when friends start dying, and the imagination starts to inflate the importance of every ache and pain and (helpfully) propel patients to their doctors. Self exams of the testicles and breasts can do something to stifle worries, but not so much as regular medical checkups that are informed by thorough family histories.
Not comfortable with your doctor? Get another. Each worry is worth at least a few seconds of the doctor’s time and may put off serious crises later.
Keep a list. Whether heading into the doc’s office or at home and expecting a call from him or her, “the list” can be worth a lot.
Next week I’ll have my list with me as I chat with my new doctor in Boston. He’ll read my next CT scan and give me the news — straight — and we’ll run through my options and worries about whatever my imagination has come up with about this ache or that ache.
At the very least, he’ll give me more advice about finessing the use of prunes and rice, Miralax and Imodium.
I will ask about the (debated) point where colonoscopies should be used to troll for colon cancer, and where the cancer doctors argue the ages and conditions when other such exams should be given. Not everyone agrees with the guidance provided by the American Cancer Society and I think more of us ought to know.
I’m not for intrusive exams that begin at age 5, but I would like to see the debate on the whens and hows of such exams brought out into the light, more, so that more of us will survive.
I imagine that would be a good thing.
Taking one more look at ‘bucket list’
Sunday, May 24, 2009
By Blaise Schweitzer for the Daily Freeman newspaper
Last week I wrote about a “bucket list” — my final wish list on what I might like to accomplish before my stage IV colon cancer tears the legs right form under me.
I had tried to score some of my traditional crass humor, but all that got me in return was a little mockery from a locker- room friend who figured I could do better than write about how many virgins it might take to make me happy.
I really was kidding, trust me.
“The Bucket List” comes from a movie with Jack Nicholson and Morgan Freeman who hoped to bring back a little joy in their lives.
Sounds good to me.
I’ve tried to get some of that humor into my life. But last week — and a few of the previous ones — came up short.
I also played a bit with jokes about the mile-high club. In case you don’t know, members of the aforementioned club are people who have sex more than a mile up in the sky in an actual airplane. I’d need some sort of proof, however, because without a free-range certificate for the people involved, I’d go nuts with shame.
While I know a lot of people ask to spend time with celebrities in their “final days,” that is pretty far down on my list too, and it would remain so even if a few celebrity (virgins) could be found and I’d have recovered completely from my cancer.
Also, I will not be wearing any fake hair, even as more folk have been regarding baldness as a sort of badge of honor lately. Months ago I’d considered donating my hair to someone who is sick with cancer just to up my satisfaction rating, but that seemed a little pathetic to me.
The only reason I’d like to hang out with celebrities might be to promote a possible book I could compile based on my truer-than-life cancer experiences.
Could I appear on Jon Stewart? He’d be fun. He has done more for political and off-the-cuff humor than anyone on television in the last few generations. Granted, I watch very little television, but I know I would enjoy tweaking the medical industrial complex while on the most comical show on television today.
Most of the folk on television who talk about their cancers are scantily clad actors, but I can take my clothes off and put on my triathlon bathing suit as quickly as the next person.
Of course, Stewart is extremely busy, so I might have to settle for Jimmy Fallon’s show. I’m still a writer, after all, so I might enjoy interviewing the Saugerties High School graduate if I could catch a ride down to the city with a buddy who would enjoy attending the show that day.
Not in my list in any way are adventures with alcohol. With my liver on its last legs, sucking down vodka would display as much class as getting in drinking contests with small children.
I’m not terribly strong of late, anyway, so soon you could be hearing about my adventures with handicap stickers instead of bolder exploits.
We’ll see.
