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.
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