Killed By Fear (Doctor Phobia and the C Word)

by Bill Brenner on July 18, 2011

The Fredstock 2 benefit concert Erin and I went to Friday night hit me where I live for another reason besides a love of music: The event was also about raising awareness about colorectal cancer. I’m a high-risk case.

Mood music:

I never knew Fred Ciampi, the man the benefit is named for. He passed away this winter from colorectal cancer, and the benefit was also meant to help out his wife, Claudia DeHaven Ciampi-Biddle. (Donations can still be made by writing to Claudia@snowlionyoga.com. Please put Fredstock Donation in the subject.)

When I saw his picture, my first thought was, “Man, he was young.” In fact, he died just shy of his 40th birthday.

The other thing that came to mind was that it could just as easily be me in the obituary. The childhood Crohn’s Disease that reduced my colon to a tube of scar tissue also left me at a much higher risk for colon cancer.

It’s something I’ve had to live with since 1990, when I got a letter from my then-doctor recommending I get regular colonoscopies to monitor for possible colon cancer. As a 20-year-old I balked. You never really worry about cancer at that age. But I had the test anyway.

It was a good thing I did.

They found hundreds of polyps throughout the colon. These weren’t — and aren’t — the type of polyps that they typically worry about. These are more like skin tags. Specifically, they are part of the scar tissue.

The doctor was pretty stern with me. “You can’t wait five years between colonoscopies,” he told me. “This stuff can be dangerous.”

Naturally, I went eight years before the next one, and in those years I did some of the most vicious binge eating of my life. Each year that passed made me more fearful of what was going on inside.

I got the test done in 1999 because of some bleeding. Everything was fine, and I’ve done much better at getting a colonoscopy every other year to keep an eye on things. So far, so good, though I’m about a year overdue for the next one. I better make that call this week.

Perhaps I’m a fatalistic personality, but I won’t be a bit surprised if colon cancer is found in me at some point. I haven’t had a Chrohn’s attack since 1986 and I know my luck could run out sooner or later.

But I don’t really fear it like I used to. I figure I get the test frequently enough that anything they find will be at an early and treatable stage.

If I’ve learned anything from all this, it’s that fear and embarrassment is the deadliest risk of all.

People are too embarrassed to get a colonoscopy because of how the procedure is done. No one has to know about it except their doctor and maybe a couple family members. But they avoid the test anyway because they still find it embarrassing. Then they end up dying of colon cancer a few years later. Not in every case, but in many.

Embarrassment is a powerful thing. It keeps a person from seeing things as they really are and keeps them from facing their demons.

It’s not always bad to be embarrassed. God put the emotion in us for a reason. If we’re a jerk to someone or we get caught doing something unethical, we should feel shame.

But we shouldn’t feel shame over an illness and shouldn’t be embarrassed about getting help, whether it’s for colon trouble or the mental illness and addiction at the heart of this blog.

I’m not saying Fred was like that. Like I said, I never knew him.

But I know a thing or two about fear, shame and embarrassment.

Don’t let those things keep you from letting the professionals help you.

OCD Diaries

{ 1 comment… read it below or add one }

Claudia deHaven Biddle-Ciampi July 18, 2011 at 8:01 am

Dear Bill,
I’d like to tell you about Fred’s story. He was starting his own business (an amazing computer geek genius in networking, teaching, fixing, devising ANYthing computer)…amongst cars, gourmet chef..and animal advocacy gentle prince af a soul with a kind and constantly giving nature and humor. He was living in California and came to MA to visit with a toddler nephew he wanted to visit, not wanting to miss his growing up from distance, but no intention of staying here. We met when I needed help with my computers…in a heartbeat fell in love (literally the first time we held hands..we told people before we told each other) and he began to work part time here (trying to figure out how to get me to go back to California with him. Hence….no insurance.
He was never embarrassed about doctors,.but just had no money for them and since he didn’t smoke, even ever have a broken bone he thought he was fine, I totally healthy 35 year old man.However, he had recalled his mom had hemorrhoids, so any bleeding was attributed to that. Hemorrhoids can be quite a lot..or a little blood. There was no known family history of colon cancer either.
Now, I am the opposite, I have had multiple surgeries from a thoracic tumor to spinal cadaver implants to a hip replacement..on and on..and underlying it all a rare auto-immune nuero-muscular disease diagnosed in 1978. I have been in chemo-transplant regime ever since. For work…transferred from Western Medical studies to becoming an advanced Yoga Therapy practitioner dealing with Olympians, tho quadriplegics, and CP ..everything in between. I am very in tune with the body and the rat race that is “medicine and health care”
As Fred and I spent every possible moment together I began to notice chronic..long term symptoms such as: night and day heavy perspiration..body oder changed..not BAD just very “different”. He said he thought he had a flu but nothing too bad..no high fever etc..just run down. There was some ordinary constipation or the other directionSome foods he assumed bothered him..he kept coughing/hacking in the morning…his coloring was not a NORMAL sallow part Italian heritage..but ashen..his dark eye circles got darker and he looked bloated.
I could never get him to leave work he LOVED those computers. However, ONE weekend he felt lousy…putting together some furniture almost killed him. By Monday, Tues, and Wed, he wanted me to pick him up before noon after being dropped at work at 8:30…’I feel like Hell Honey please come get me..I cant make it to the subway’. I said ” love,I dont give a SHIT if you dont have insurance…what are they going to do..reposes my wheelchair? You are going to the ER NOW!”. He said very faintly..’OK I WANT to go’. That was not like Fred.
I wrote a list of his symptoms because there were so many to bring to the hospital, it was both sided of an envelope, all the short/long/and sudden onset symptoms. There were other “TELLS” too…our cat would shadow him as he got sicker…putting his paw on Freds heart or arteries as he slept on the couch “checking his pulse” overly interested in smelling him..watching him like a hawk..not like Rudi the cat to pay that attention to Fred.
After dealing with the BULL of “major hospital ER’s, I said NO way!…they will just say “35..no trauma…and send you home with Tucks and antibiotics”..”We’ll go to a small hospital affiliated with a major”. (Mt Auburn is part of Beth Israel but 1/4 the size.
At the Mt Auburn Hospital EW the nurse listed to the “chronic symptoms’ and a resident overheard them. The chronic signs…the odors… sweats, fatigue..bowel issues were even more important than the urgent symptoms. He was whipped into an MRI so fast it was astounding. They said looked like clearly advanced cancer…a HUGE tumor in the colon, some liver, and what looked like lung too. (LATER we found he was ridled with Sarcoidosis in his chest too).
Not 2 days later he was in surgery.
It was stage 4 colorectal cancer. We were already engaged, but in recovery he asked me “will you marry me SQUIRREL?” (we feed squirrels in the park…connecting to nature and creatures)
“BUT I AM STANDING AT MY OWN WEDDING!” less than 2 weeks later we married in the Boston Public Garden…Our first wedding. He was so week he almost couldn’t stand for the Tux Fitting. More cancer looming…
Freds family was asked to be checked..mother/father/ister…his FATHER was discovered to have stage 3 and had HAD a colonoscopy within 1 year. He is classic mid 60’s, overweight etc..and is in remission now.
We ended up at Dana Farber..where the last 2 years were a disaster. His oncologist (head of the department) constantly put of Freds chemo (supposed to be every 14 days) for his vacations, lectures,at times months…claiming there was a “wait of 6 weeks in the treatment chairs” NOT SO I FOUND OUT. Fred died NOT at home in hospice who wouldn’t come in the SNOW…The doctors were so arrogant that even when he was citrus yellow/ orange they acted like I was exaggerating.. he wasn’t jaundiced, when I told the hospice nurse he could not swallow his pain medicine she never called to have it switched to I.V or liquid, when I said he had not urinated in days I was being a pushy BITCh and they never catheterized him.
We remained great friends with his head of Oncology nursing at Mt Auburn and our dear friend AL came over when I said Hospice has not been here for 4 days. I cant pick him up from the floor (my left hip needed a replacement and I could hardly walk in January without crutches) AL raced over and we got an ambulance to take him to Mt Auburn. Upon admission to the hospital his bladder was almost exploded!
They brought in a second bed, as they had when he had surgery 5 years before, and I tried to hold his head up so he could breath. So cheated out of having a planned peaceful passing at home, instead Fred got 80 hours of what the oncology unit said was the most gruesome horrific death in 35 years ANY nurse/doc.pharmacist had seen. No amount of pain, or anesthesia drugs could dull his agony and awareness of every second trying to beg me to take him home, but to ill to speak…just screaming and moaning in death I could read his lips and his tears and frightened body..His father always hated me for not being Catholic and berated me at the funeral home Friend said DONT GO Fred would not want you to….I did not go to the fiasco Fred did not want for a Funeral. I cried for a month.and visiting with Audrey and Eric of the 360’s we had planned a Fundraiser while Fred was alive..Billy Ruane was going to help…Billy died, and we said lets turn that fundraiser into Fred’s REAL celebration..his true PARTY…for his life…And Fredstock was born. Later more musicians got involved, my beautiful friend Kathy Desmond donated the Magic Room…and later Curious Ritual added an extension, and was born.Fredstock II.

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