William Cadel, Esq. Defeating The Odds and Thriving

I am not a doctor, and have often said I have saved more lives by deciding to pursue a career outside of medicine.  That having been said, I can now offer some thoughts on being a patient, that one may find useful.

Up until Wednesday, May 3rd, I had been a happy, healthy human.  My wife had put me on a diet – no, rather a life style change as women prefer to call it, when I went for a routine colonoscopy for my Crohn’s colitis which have had for forty-five years, essentially with no problem after the initial attack.  

While I had been losing weight in a proper fashion, I suddenly stopped losing weight, so my wife asked the gastroenterologist ‘why?’.  Go get an ultrasound he said.  

OK, Monday, done.  Saw the doctor on Tuesday, and he said I had clearly gained considerable weight in my gut, and was a different patient than the one he saw but five days before.  Go get a CT scan.  

Done on Wednesday.  Radiology group said they would let my doctor know within 24 -48 hours.  OK.  Drove the ten minutes home, and started to pay bills waiting for my wife to get home from work.  Shortly thereafter I got an e-mail from the radiology group.  Looks fine – remember, I’m still not a doctor.  Diagnosis seemed to be in some foreign language ‘extensive peritoneal carcinomatosis’. 

 What the heck, let me google that.  Six weeks to live!!  This is where my patient story begins.

The gastroenterologist called the next night – an eternity later after a day of mental torture, from how do I tell my kids, to moving money to pay for real estate taxes and my wife’s medical insurance, to coming to grips with an end to my life, a few decades earlier than I had planned.  

Saw the gastroenterologist on Friday.  While waiting patiently in an examining room, his long-time nurse popped her head in.  I told her my diagnosis.  Holding back tears she tried to smile and wished me well.  She didn’t have to say anything, her expression said it all. In simple understandable English, I had stage 4 colon cancer that had spread to my peritoneum, the sac that contains one’s internal organs.   

Doctor said it was not curable, but treatable, whatever that means.  The next day seven liters of fluid were drained from my abdomen, the first of several similar exciting events.  (A fast way to lose 15 pounds in an hour!) Met with doctors from Northwell Health and Memorial Sloan Kettering and was told the same thing: with care, median life expectancy was 22 months. (Starting from when?).

 I chose to go to Memorial Sloan Kettering, which could not determine the exact cancer I had, as the biopsy sample was ‘poorly differentiated’.  The cancer was very aggressive, and they could not wait to start treatment.  

They tried a chemotherapy, hoped they guessed right, and hoped for the best.  My physical condition? Stepping over the wall of the bathtub to take a shower was a physically draining experience, and reaching down for the shampoo, I was thinking am I wasting eighty nine cents if I asked my wife to buy a new bottle.

I’ll spare you the nitty-gritty of the next few weeks, but assure you there were stories.  

Now fast forward about eight weeks and three chemotherapy sessions.  I woke up in a sweat one morning, my shoulders were achy.  My wife insisted on calling the fire department ambulance when I did not feel better after sitting down and having some orange juice.  

The EMTs came and said my heart EKG was fine.  My knowledge and the internet said otherwise.  Finally I convinced them to take me to the hospital, and yup, I was having a heart attack.  A 99% blockage of the LAD (a/k/a the “widow maker”. 

 I was shocked twice on the operating table while having four stents inserted in my heart, and even experienced an out of body experience, seeing odd shaped faces as I was going backwards through a tunnel, only to wake up and find several nurses on top of me.  Suffice it to say, I was not cancelling my life insurance and no one was going to sell me a new one at this point.

I am sure you can believe me when I tell you I have shared with you a much abbreviated narrative, but here’s the good news.  It is now three years later.  The cancer is virtually gone, only a few tumors too small to measure remain, and my oncologist is treating this as a chronic condition.  I receive chemotherapy every two weeks, and the cardiologist says my heart is ok, have no symptoms or complaints, and I see him every six months for check-ups.  

This is why I am writing this piece, and what I want to share with anyone facing similar medical realities:

Of course, one’s experience will depend in large part on their own physical health going in, and the nature of their cancer diagnosis.  That being said, regardless of any specific situation, four things stand out.

First, Stay off the internet.  (Repeat often!) Avoid statistics. Statistics are general.   

Statistically I should be dead; surprise, I’m not.  A general statistic is global.  It includes the ninety year old from the back country who has never visited a doctor and has one foot in the grave, together with the fifty year old, non-smoker, who was in great health, has longevity in the genes, and was diagnosed at the earliest possible point. 

Second, only take advice from doctors who are treating you and know your specific case.  Yes, doctors may know something, but cancer may not be their specialty.  Their knowledge may be incidental.  Yes, some doctors and medical providers (nurses, physical therapists, social workers, etc.) may speak with some knowledge, but you decide how to evaluate it.

Your doctor knows you.  Listen to her/him.  If the chemistry is not right, find another doctor in the organization.  You need a doctor who will listen to you, not look at the clock and will understandably answer your questions. 

 If a doctor makes a suggestion, you need to have trust in that person.  I started at a suburban facility of an outstanding New York City hospital.  The physician was wonderful, but coordination with staff was lacking.  I had a drug which required me to carry it with me for two days after treatment.  I chose to have it removed from a branch closer to my home. 

When a problem developed with my drain and the first facility couldn’t arrange an appointment in a reasonable time at the more local facility, I ‘sounded off’ (polite language for the squeaky wheel gets the oil; absolutely fundamental for a patient) the two days later when the drug was removed at that closer facility.  The facility manager called the interventional radiologist and got it done.  The interventional radiologist told me “I don’t care whether you are (facility 1’s) patient or (facility ‘2’s) patient or (facility ‘3’s) patient (referring to the various locations), you are MY patient, and if you have a problem tonight, I’ll take care of you tomorrow morning!”  

That was it for me.  Five days later I had my regular appointment with a new oncologist at the new local facility.  The oncologist was running late, but actually apologized for the delay, and then spent over an hour answering my questions and getting to know me.   

Two weeks later I had a heart attack.  I was scheduled to have chemotherapy that day.  When I was brought to the CCU room after surgery, I called my new oncologist to say I wasn’t coming and left a message with staff.  An hour later, the first call I received after my morning’s ordeal was from my oncologist, asking how I was!  Top that? You can’t.  Trust.

Third, get up each day, get dressed, appreciate each day as a memory, and enjoy it.  One can naturally think about the future, and what may and may not be, but use the time ahead of you most productively.  Smell the flowers, play with the dog, enjoy time with friends and family.  If you are functioning, you are still alive.  Appreciate that.

Last, and perhaps most critical, is support of good friends and family. Fortunately for me, and unfortunately for him, I have a dear friend who has suffered five different cancers over the last twenty-five years.  He is still around, and enjoying each day to the fullest.  Whenever I was doubting, feeling down, lost in negative thought, or relying on statistics and internet, he was a resource and represented hope and normalcy when it was hard to find.  Don’t be afraid to share thoughts and talk with trusted friends.  Contrary to initial instincts, you will be amazed how understanding people can be.

So, here I am, three years later.  I laugh at the internet, taking it with a grain of salt knowing its perceived ‘wisdom’ didn’t apply.  I no longer look at ‘global’ statistics, but think about subsets, ex.: how are people with my specific and current history doing and what is my diagnosis now?’  I hear positive comments from my other doctors (GP, ophthalmologist, cardiologist, etc.), but can properly assess their medical comment beyond their good wishes. 

My oncologist says she has seen patients in my condition live for ten years.  I appreciate my family, life and make each day a memory - good advice whether one has cancer or not.  And my wife and I look forward to attending my dear friend’s son’s upcoming wedding with him and his wife, and appreciating how to enjoy life.