For someone fortunate enough to have never woken up in a hospital in the last 66 years, being referred to as “one of our cancer patients” by the Navigator Nurse at the South Shore Hospital really brought me up short.
For the last 3-4 weeks at least, I have been losing my appetite, weight (20# to date), turning yellow and peeing brown. I just totally lost my appetite. We had a bowl of leftover candy bars from Halloween, which should have been the object of a game of cat & mouse as Betty tried in vain to keep me from devouring them all in one day. The Twixes and Snickers sat untouched on the shelf for almost two weeks. And the ones I ate were eaten more from habit than desire. To those unfamiliar with my dietary habits, this rang the giant “WTF!” bell to my wife who immediately began plumping for a doctor’s visit.
But I’m a guy, and I had an appointment already scheduled for about 10 days later, so why not wait. By about day 7, I was noticeably jaundiced, still had no appetite or energy, and began to uncharacteristically blow off opportunities to get together with my friends and family. I even had to cancel dinner with the kids one night, which was bitterly disappointing to me.
The worst was the itching. Soon my arms, legs and chest were covered in scratches and scabs from spending nights furiously scratching the fiery itching that would not cease. Only cutting my fingernails and slathering my body in cortisone allowed me and Betty to get any sleep at all.
Of course, the Big C was the first thing I thought of. I’m getting older, eat a lot of crap when Betty isn’t looking, and have laughable exercise habits. I assumed that explaining my symptoms would unnecessarily get friends and family to draw the same conclusion so I played it pretty close to the vest to avoid fuss until “we know something”.
Evidently, it’s harder to mask a precipitous 20# drop in weight and an unhealthy yellowish skin tone than I thought. As the appointment drew close, folks were looking at me funny.
I saw Dr. Stanley and explained it all at a scheduled blood work exam and he immediately ordered a ton of tests on the freshly drawn blood. That night Stanley called the house and ordered me off Simvastatin immediately and said that my liver function was abnormal and needed to be investigated. Appointments would be made!
An Endoscope by Dr. Ancowitz found two ulcers and led to a sonagram, followed by an MRI or two. My now double doctors located the problem as a blocked bile duct and Dr. Ancowitz did another Endoscope to clear the blockage, install a stent and biopsy everything in the neighborhood. The biopsy had evidently found a small, local spot of cancer at the point of blockage. And this must be removed.
I was called to the spiffy new Dana Farber Center at the SS Hospital and, just about two weeks from the initial meeting with Dr. Stanley, I was scheduled into Brigham & Women’s Hospital in Boston for an MRI, a CT Scan and my pre-op meeting on the 26th. Then back again at 5:15 AM for surgery on December 1st.
The operation part doesn’t scare me as much as it probably should, since I am blissfully unaware of what “going under the knife” involves and I am using that willful ignorance as a sort of shield. I have also learned to compartmentalize my worries pretty well over the years, (Thank you, Electroswitch for forcing the development of this self-preservation skill in me.) so I can actually put off worrying until I need to focus on a particular problem.
Without mentioning it to each other, Betty and I were both pretty much expecting this kind of result (or worse) and my prime concern was “How do you tell the kids if it’s really bad?” Betty has been by my side every step of the way, but we didn’t want to tell our son and daughter until we actually knew what was going on, so we played it pretty close to the vest until yesterday, when all was explained to us by the amazing Dr. Clancy.
After a long meeting with him and speaking on the phone, we now understand why both the SSH and B&WH staffs genuflect at the mention of his name. Clancy is warm, avuncular, meticulous, speaks carefully and exudes quiet competence. Betty and I quickly decided to put our faith in his judgement.
I am told there is “1% mortality” involved in the Whipple Procedure, but that Clancy personally does about 50 per year of B&WH’s 100+ Whipples and neither the man nor the hospital has lost anyone yet. I immediately turned the “1% mortality” into “99% success” which filled us both with relief.
I, probably the least courageous person you know, actually find myself pretty calm at this point. Not that none of it is frightening, but I have decided not to worry about things so far out of my control. I do reserve the right, though, at any time to revert to a whimpering puppy who has to be dragged by the ankles into the operating room. But probably not.
After having the now not so dreaded conversations with Doug and Jessie and bringing them up to speed, I decided to send a note to our friends and loved ones who knew we awaited the results of all the testing and were texting for news.
Now that we know the score and have a plan to fix things, I was able to make the note a bit light-hearted while still honestly outlining the situation. I tried to highlight our renewed confidence going forward. This is what I wrote:
I saw another doctor today, a Dr. Tom Clancy (!!) to be precise, who is the chief of surgical oncology at Brigham and Woman’s. (It said that on his smock.)
Here’s my deal so far:
My itchiness and yellow pallor has been traced to a bile duct connecting my liver, pancreas, gall bladder and duodenum that was blocked up. They unblocked and stented it last week and my condition improved immediately.
They biopsied the lesion that grew to block the duct and found traces of cancer, but very localized and contained.
On or about the first week of December, I will spend about 10 days at Brigham & Woman’s as I undergo a “Whipple Procedure” which essentially is removal of some duodenum (entrance to small intestine), a bit of pancreas and probably my gall bladder and then piecing all the remnants back together with the ducts and stuff. Then I have ten days of sitting around the ward while things heal and the plumbing begins to work again. When you see me at Christmas, you will all have the opportunity to tell me how great (and slim) I look.
I will be unable to lift more than 10# for about 10 weeks and not drive for about two. By spring, I expect to be my usual vigorous, athletic, vibrant self. Or I will probably just settle for being pre-op me.
In my early ignorance, lying abed in the dark of night, my considerable imagination churned through about a million terrible outcomes. You know how that goes. But then every time I spoke to one of my new legion of doctors and nurses, I felt relieved. They do 50+ of these per year.
Now that I know what’s up and I have learned a bit about the quality of the medical staff that I’m working with, my fears have dwindled down to just that one immutable terror, using a freakin’ bedpan while a kindly, smiling nurse cheerfully waits to carry off the result.
TLB and I feel much better about this now that we know what’s ahead and that my life is not really threatened. Betty has already set us up with a nutritionist for pre- and post-op diet tips. I believe that she feels this may be her big chance to finally get me to eat healthier. My only stipulation is that any diet that does not include Hola, Panera Bread and Bertucci’s will not be acceptable.
I am more grateful than I can say for all the concern expressed by my friends and loved ones (big overlap there). While I am not looking forward to scalpels, tubes and bedpans, I do focus on the day in the very near future when it will all be behind me. I will be home, up and about, and driving by Christmas.
Just remember to limit all my presents to under 10# each. For safety sake.”
TMI, possibly, but that honestly describes our status to a T.
To whomever reads this stuff, I will try to keep up with what’s going on and post it here as I work my way back to full health.