Last year, I was diagnosed with incurable ampullary (a type of pancreatic) cancer. I rode the rollercoaster in 2018, and it's a very bumpy ride with no seatbelts. Happily, Georgetown University Hospital, my cycling friends, my square dance friends, my LDS friends, my siblings, and most of all my husband have succored me, have provided me with excellent care, good cheer, and the personal care that I've required. The path I'm on only ends in one way. Sooner or later the reaper takes, but I'm planning and hoping that it's not a grim path. Books, doctors, and the Internet have all told me it will probably be painful and debilitating. Judging from this past year, I know I will experience physical and emotional challenges. But I also get to experience the love and concern of a slice of humanity for whom I have much love and concern. I just thought I'd never be needing theirs. The turning of tables has been gentle, but real.
Pancreatic cancer is a difficult disease. It is almost always diagnosed too late to be curable. Prognosis is not good. First year survival rates are around 20%. After five years, it is about 7%. When diagnosed, if untreated, the median survival is about 3.5 months. With treatment that rises to about eight months, though many patients live much longer. When the gastroenterologist gave me the diagnosis, I wasn't angry or shocked so much (I'd been living for a couple of months with acute pancreatitis), as thinking, "Hmmmm, I've turned a corner. Am I on a shortcut, or is this the main highway?"
Shortly before the diagnosis, I was in my primary care physician's office talking over with him the results of a CAT Scan. He told me that what he saw in the scan was a tumor, not a cyst, or some other benign mass. I asked him what I should do, and he told me, "Get your affairs in order." Well, that was a little blunt, but it did spur me to action. I called my attorney, and we revised some documents so that my legal affairs, at least, were in order. I signed those documents the day before I entered the hospital. Just a note to self: this is not a good way to manage end-of-life planning.
Immediately after talking with the gastroenterologist, my husband, Ron who is my primary caretaker, and I talked with the surgeon who would operate on me. He told us that he would perform a "Whipple procedure." Then he described what he would do: he would remove the duodenum and the ampulla, about one-third of my pancreas, my gall bladder, and (of course!) the tumor. I heard all of that, but it didn't really register on me. I mean, you go to the doctor, and the doctor fixes you, and then everything is all right again. I was told at the time that I would have twelve chemotherapy sessions followed-up with six weeks of daily radiation treatment. Sounds cool to me!
It didn't end up that way.
Ron and I got to the hospital very early on January 23, 2018. Lots of people get operated on early in the morning (evidently) - the waiting room was crowded. I've developed a keen eye. I know who is ill, and I know the caretakers and well-wishers. Some of the patients were alone, often with walkers, crutches, or canes. Some of the patients had whole retinues, fortified with early morning coffee (where did they get that?), and carrying on cheerful communication. Some of the patients were like me, with a partner or loved one. I don't remember what Ron and I talked about, certainly not the weather. I do remember feeling intense relief that finally we were doing something about the pain and the emotional burden I felt I had been carrying. I was grateful to be in that waiting room. I was ready for just about any outcome.
I checked in. My name was finally called. I undressed and was gowned then trundled off to a darkly-kept corner of the hospital. Ron was with me through every corridor in the hospital. The preps began - vitals, history, anesthesiologists explaining their protocol, a chaplain offering support, and Ron there with me all the time. Eventually, drips were started, and I don't remember much more than my bed entering the elevator, and the next thing I knew I was in a hospital room, and a nurse was inquiring if I was okay. The wonderful thing about surgery, is that the surgery is completed before the patient ever experiences it. Such is the miracle of modern medicine.
I experienced pain during recovery. My body had been traumatized. I was put on anti-nausea, and pain meds. I don't like pain meds, because they make me woozy (that is a word, by the way). I learned some things about my body - deep, gnawing, relentless pain is unpleasant. So I took my meds, and felt woozy. The nurses wanted me to walk at least four times a day, beginning on the second day after surgery. So we did. I looked stylish in my hospital gown, my IV pole, and my walker. But we walked, first with a physical therapy nurse, then with Ron, or whatever particular friend would be visiting that day. We walked around the corridors, past the waiting room, past the ICU, and back to my ward. This was my recovery routine for eight days.
Finally, Ron brought me home. I had had a couple of meals in the hospital, but I had no appetite. Within a few days of returning home, I lost my appetite completely, and the smell of cooking food was disgusting. I developed a full-blown food aversion to the degree that the only thing I could eat or drink were nutritional drinks, first Boost®, then Ensure® and Kozy Shack® tapioca pudding cups (absurdly delicious™). My caloric intake plummeted, and I began a (short) period of dramatic weight loss. Ron and I were both a little desperate about this turn. It's terrible when you've loved food your whole life, and you can no longer eat, have no desire to eat, and experience aversion or disgust for food. It was an unnerving experience. It took me several weeks to get over it. I had a heightened reaction to cooking smells. I realized that I could probably eat food if I didn't smell it cooking. We went out to breakfast a couple of times, and then tried other restaurant meals. I think my ability to eat home-cooked food probably returned within a week or two.
During this same time, I was taking some powerful drugs: dexamethasone and ondansetron for nausea, and oxycodone for pain. My body was healing somewhat, and as soon as my appetite began to recover, I needed to gain weight so that I could begin chemotherapy. I couldn't sleep very well in a bed, so I slept in a reclining chair or on the couch in the living room. I was experiencing bouts of acid reflux that were painful and difficult to control. Everyday I was dealing with diarrhea or constipation. My digestive system seemed at war with itself. My body was getting used to the new plumbing arrangement. Emotionally, I was nuts. I didn't know my own body. It was a dark time, except for a large group of loving friends and family who determinedly took my care in their hands and hearts.
This is probably a good place to end this first episode. Tune in soon for the next chapter.
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