My wife, youngest son JH and I had a lovely vacation to Cook Forest, PA more than a week ago, and I will talk more about that later; but in the last couple days of vacation and while visiting my parents and sister on the way home, my abdomen kept growing noticeably larger while my skin felt very tight and uncomfortable, especially after eating or drinking. I began eating a couple very small meals a day and though my weight was not changing, my abdomen was looking very distended. A weeklong back pain set in and I could not find a comfortable position for sleep because it was painful to sleep on either side, and sleeping on my back was killing me; I just stared at the ceiling and shifted my weight, while my cat Elsie circled me, slept under my armpit, cozied up to me, and I think she was worried. That, or perhaps she was just opportunistically getting all the pets of a lifetime from this poor insomniac sucker who was clearly awake to pay attention to her and nothing much else.
I wondered aloud to my wife how anyone could deal with a huge belly, constant back pain, high blood pressure, a stomach that can hold only a handful of food, nausea, pelvic floor pressure, and skin that was stretched as tight as a drum, FOR AN ENTIRE WEEK — and she shot me a strange, sympathetic look, picked up on my implication and said, “I’m sure cancer is much worse than pregnancy.” It was very sweet of her to say, but after four pregnancies with the same symptoms for the better part of a year, and where her abdomen was also being violently kicked, I cannot even imagine being able to survive. I felt very guilty about complaining in her presence because of that. Don’t get me wrong, I still complained, I just felt guilty about it.
July 30: New Scan and Not Great News
I contacted my oncologist with my symptoms and they immediately moved up my next CT scan and lab blood work from August 11 to the next morning, July 30. The scan analysis was full of troubling news. First, an epicardiophrenic lymph node has grown to 8mm from the usual sort of 3mm size and is an indicator of advanced cancer metastasis to a location between the diaphragm and the bottom of the heart. The scan also found two tumors in my left lung, 6mm in the upper lung and 7mm in the lower lung, and one 5mm tumor in the lower right lung, and a number of smaller tumors forming. Liver tumors have grown to 2.6cm from 2.1cm and to 3.0cm from 2.6cm. There are new tumors in the omentum.
The best news was that my platelets are now 117, and anything above 100 qualifies me to get on the waiting list for two different studies of promising new drugs that target my tumor’s KRAS mutation. There is a study in Virginia of a similar drug that may be approved by the FDA next year, as its preliminary data is very promising (but many other people are trying desperately to get into that study).
In the meantime, I have decided to step back to the FOLFIRI+BEV intravenous chemotherapy, which has some of the worst side effects to endure, but when I was on it a year ago it seemed to do the best job of arresting the tumor growth. It can buy me time to get into a study with a better drug. It wouldn’t be the sort of time I would spend cheerfully doing cartwheels in rolling fields of daisies; it would be more like a protracted battle with constant tummyaches and explosive diarrhea, but at this point any time I can spend with family and friends is precious to me.
So the chemo infusions were scheduled for a week later on August 6. I did not think I was going to make it until then because of the pressure and pain of the abdominal swelling and ascites — it felt like I was going to burst like Mr. Creosote after a wafer-thin mint (DO NOT Google this if you don’t know what it is!).
They checked out my abdomen, heartbeat, and breathing, and noted no bowel sounds so I was instructed to t