Down the Downward Path: II. What Rhymes with Chemo?

Ron and I spent Christmas Eve 2017 with some friends in the Kensington Ward. Several people prepared food for dinner that I could eat: extremely low-fat fare. I was in the midst of acute pancreatitis, and fat = pain. It was a tenacious, unsettling pain that even with pain meds could keep me awake at night. Around these holidays, I felt like I was staring death in the face, yet at this dinner, my friends were giving up fat for me. I was deeply touched. Other people were, in a sense, taking on my pain and doing something about it. Their gesture gave me some holiday hope.

In the new year, 2018, events moved quickly, I had the operation and the recuperation necessary to begin the chemotherapy. I also had a port installed in my chest so that I could receive chemotherapy drugs. The Saturday before I began treatment, my friends gave me a wonderful birthday party (my 67th). In December, I didn't think I would live to see my 67th birthday, so in March we had a delightful celebration. Two days later, Ron and I drove to Georgetown University Hospital's Lombardi Cancer Center. My oncologist checked me over, and the blood work indicated that I could begin chemo. Ron and I went to the infusion unit, and I got to use my brand-new port the first time. Easy Peasy.

Chemotherapy is all about poisoning the patient to kill the cancer. What doesn't kill you makes you weaker. After the infusion, the effects begin to kick in. After a couple of days, I felt flu-like. I also had diarrhea, hiccups, and a lot of other unpleasantness. None of it is really awful or anything (at least for me), but the process was tiring. In addition to the infusion, I was also taking an oral chemo drug that had some very unpleasant effects. My body also was dealing with reflux. Ron and I were researching all of my drugs online to check on side effects and how to counteract them. Staying on chemotherapy is learning how to manage side effects. Happily my oncologist had suggestions for that whenever we had a questions.

I continued to receive infusions every two weeks. After the third infusion, my white blood count fell too low, and I had to skip two infusion cycles until my white blood cells recovered. Also during this time I had a scan that indicated the chemo treatment I was receiving was not effectively treating the metastasized cancer in my lungs. My oncologist also confirmed that my care was palliative, not curative. My meds were changed, and the changed medications have been effective (for now) against the various metastases. I sought out a therapist to talk some of this stuff over. Rather than "fight" my cancer, I want to learn to live with the disease for as long as possible, while being able to live doing some of the things I love. For me, the awful thing about cancer is not the disease, itself, it is the robbery of my abilities to do the things I love in my life, such as cycling and square dancing. I really don't have the stamina to do those activities the way I used to, and I miss that.

In May, I started to feel severe abdominal pain on my right side. My oncologist reviewed some of my scans, and concluded that I might have a mass in my right lung that was pressing against my diaphragm, causing the pain. I was evaluated by a radiation oncologist who recommended five daily courses of radiation. We did that around the Memorial Day weekend. That seemed to stop the pain. For the x-ray therapy, you lie on a movable bed, and this robotic arm moves up around you, presumably zapping cancer cells. I felt like I was in the middle of a space opera or something. I'm fascinated by the technology of disease, especially when it's scans, probes, or radiation treatment. My body has some priceless (i.e. very expensive) photos. I'm not sure what else to call them.

Since switching chemo meds, I have been receiving infusions approximately once every two weeks. I finished out the year with twenty-one infusions. Each infusion has its own cycle. The day after the infusion I feel pretty good because of the steroid, dexamthasone. It wears off about mid-afternoon the day after. Sometimes, coming off the steroid is a gentle letdown. Other times, it's a crash. The following day or two, I feel like I have the flu. I also often break out with acne on my scalp, and sometimes on my face. Most of the time, I get one or two mouth sores. I oftentimes lose weight. I'm managing constipation or diarrhea. By the end of the first week, I'm usually recovering, although with some cycles, that recovery doesn't begin until well into the second week. I never quite get back to where I was before the infusion. I'm slowly getting weaker as time goes on.

Ron and I spent most of 2018 figuring out the infusion cycle and how to manage the effects. In the course of the year, one of the meds has caused foot and hand pain - chemotherapy induced peripheral neuropathy (CIPN). CIPN is one of the main reasons why patients eventually stop chemotherapy. CIPN is basically nerve pain caused by the medication. Consequently, I have been taking a vitamin supplement to help manage the nerve damage. The neuropathy has continued to progress, so I have gone on another medication - an anti-depressant - that has been clinically proven to be effective for CIPN. I've been monitoring myself for side effects, both physical and mental.

My cancer also metastasized into my spinal column. The chemotherapy was successful in killing the cancer there, but it has weakened my bones. My oncologist recommended that I take an osteoporosis drug to help remineralize my spine. I am taking that drug as well as calcium supplements. The drug is very unpleasant. It exacerbates the neuropathy and causes muscle pain. The effects last for several weeks after receiving the drug. I am currently taking the drug once every three months.

In all of this, I want you to know that the quality of the care I receive has been excellent. All of the staff at Georgetown University Hospital have been caring, concerned, and thoughtful about my care. All the nurses at the infusion center know me, and that is comforting to see their smiles and feel their grace. The appointment clerk at the Lombardi Center is always greeting us in her wonderful way. I love having her as my check out person on my way out of the clinic. She really cheers me up. My doctors know me. They know who I am. I've been very happy with my care thus far. The treatment is a little grueling, but I'm managing to get on with it.

The operation and the follow on chemotherapy are keeping me alive. So far, the biggest hurdles for me have been chronic tiredness and loss of stamina. I belong to a Facebook group of Whipple operation survivors. Reading their stories, I have to conclude that I'm doing pretty well. I'm going to stick with the chemo as long as I can.

This is a good place to end this chapter.

Down the Downward Path: I. Diagnosis, Operation, and Recuperation

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.