Ben Saypol

First post: 7/4/2017 Latest post: 8/10/2017
Really when we are talking my story we are talking about a journey of being a student, to an actor, to a teacher, to a graduate student, to an Interactive Theater practitioner - as well as a high holiday cantorial soloist.  We are talking about living in Rockville, Maryland; Evanston and Chicago, Illinois; New York, New York; Denver, Colorado; and Chapel Hill and Durham, North Carolina. We are talking about playing the field in my 20's and early 30's, searching in earnest for the woman of my dreams in my late 30's and early 40's and finally meeting her, Lyn Dickinson, in February 2015.  We are talking about spending quality time  with family and friends over the years and cultivating deep, meaningful friendships with people I love and who love me.

My story with cancer -- and sad to say this is the story that will bring an end to my real story -- at least how I experience it -- started with symptoms in early 2016 which led to a  diagnosis of Stage III Colon Cancer in May 2016. I soon had major surgery (a partial colon resection), and then I had 6 months of adjuvant chemotherapy. FYI, I did not share this information with many people. I just felt I wanted to keep it private. 

I enjoyed an all too brief reign as a Cancer Survivor, as this past February, I once again was experiencing significant symptoms, and I received confirmation from my doctors that my cancer had returned. The CT scan and the pathology report revealed not only the recurrence but also the spread of the disease.  I now have Stage IV Colon Cancer, with the disease having spread specifically to the peritoneal lining (the lining of the abdominal cavity). 

To be sure this is a terminal diagnosis. This type of metastasis cannot be cured. It can only be managed. As if that wasn't enough, molecular testing on my cancer revealed that I have something known as the BRAF mutation, one of the rarest and most aggressive colon cancer mutations. Ugh.  At the time, we naturally asked the doctors how long I had. They do not like to answer that question as ever person is different. But various ranges were offered and we read the medical literature. There seemed to be a consensus that I had 1-2 years to live. Sad to say this will not be the case.

I started chemo in February. We were initially encouraged in that the cocktail was alleviating my symptoms and seemed to be slowing the progression of the disease.

Pause for a moment. Some happy news! As the disease had returned and our lives were defined by uncertainty, we decided to expedite the wedding. I am now a married man! To brighten your day, please have a look at these pix from the beautiful day on March 11, 2017. It was a small, intimate ceremony at Lyn's school: https://goo.gl/photos/f9AFfBC42CDDMSk48 (https://goo.gl/photos/f9AFfBC42CDDMSk48)

Lyn and I were determined to go on our honeymoon in June -- 13 days in New Zealand and 4 days in Tahiti. And we even made it most of the way through.  We saw many beautiful places on both the North and South Islands of New Zealand and a little bit of Tahiti (Moorea). I did not feel great a lot of the time (bloating, distention, and pain ... eating was rough), but we made the best of it and had fun. We are working on a picture album.

In Tahiti, unfortunately, acute abdominal pain and severe distention set in, followed by vomiting, We moved mountains and flew home to NC two days early to go see the Doctor. We arrived home late Thursday night (June 15) , and we saw the Doctor midday Friday (June 16). Based on my acute symptoms, she admitted me to UNC hospital and ordered a CT scan. I ended up being there for 2.5 weeks (just went home yesterday July 3).

The CT scan revealed a couple things: the cancer once again active and progressing (meaning the current regimen of chemo no longer works). It also provided evidence of some sort of blockage or dysfunction in the motility of my small intestine.  We tried conservative measures to fix the issues (rounds of bowel decompression with an NG tube and easing me back into liquids), but they did not work. I was then scheduled for surgery  on Thursday, June 29.

To start the surgery, they put a camera in your belly and look around to determine the appropriate surgical course of action. Sadly, when they put the camera in, they observed that my entire small and large intestine are covered in cancer.  Turns out there is not one blockage per se, but, again, the whole small and large bowel are covered in cancer, and, as a result, are unable to function (peristalsis). Essential my digestive system is inoperative. Taking any of the intestines out, then, made no sense, as it would not resolve the problem (lack of motility), and the major surgery would cause my body harm with no benefit.

They did do a couple things for relief. They put in a g-tube, which can drain the stomach and intestines as needed. The g-tube will enable me to drink a little for comfort and the liquid will go right out the g-tube and not back up and cause vomiting.  They also put it a peritoneal drain, which drains the peritoneal cavity of the build up of fluid (ascites), a very painful symptom of the cancer. The peritoneal drain will bring me much needed comfort from pain and distention every 1-2 days.

Now the harsh reality. I will not be able to eat for the  rest of my days. I currently am being given TPN (Total Parenteral Nutrition), which is nutrition by vein.  I am also experiencing significant daily pain -- and not just surgical pain (those wounds should heal) but more so a global abdominal pain from the abundance of cancer in the abdominal cavity. For the moment, we seem to have found a pain management strategy that works for me.

We are now faced with some difficult decisions.  Chemo, while an option, does not seem to be a great one. It would be experimental, have nasty side effects, and, frankly, has not been proven to prolong life that much. Also, the experimental drug in the cocktail only comes in pill form, which they are not sure I would be able to absorb it fully given my dysfunctional bowels.  We are also exploring home hospice options, which would be comprehensive palliative care at home. I am suffering quite a bit. For now though, while we make that decision, we have chosen to do home health care with TPN at home and taking drugs to manage the pain. 

In any case, I am not long for this earth.

Earlier this year, when we received my terminal diagnosis, Lyn and I  huddled up and decided that we would simply take life day by day and live as presently and as fully as we can each day. We made a commitment to make the most of our time together.  We continue to live by that philosophy.

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