The Fall semester of 1992 was a difficult time for me. I attributed this to several factors, none of them even remotely related to a recurrence of cancer or the possibility that the cancer had not been checked. I had frequent bouts of crying for no apparent reason, something I had very rarely ever done before. I surmised that some of my symptoms were menopausal, the chemotherapy having thrown me into an early menopause. I wondered if, because I had sailed through the hard past months in high spirits, I could be having "post-traumatic stress" symptoms, something that had happened to me during another crisis in my life. Surely, the fact that I was using three new textbooks in three different classes and a whole new hardware/software system in the Computers for Teachers class I taught could add a great deal of stress to the other two conditions. Stressed out---that was my own diagnosis.
My three month visit with my oncologist was originally scheduled for October 23rd, the anniversary of my father's death. Even though I'm normally not a superstitious person, I'll admit I was a little relieved when the office called to reschedule the visit. The one thing that stands out in my mind about that visit is my answer to a question the oncologist asked about what worried me. I thought for a moment and the only worry I could dredge up was "I'm afraid I'm not worrying enough!" I was clearly denying the possibility that the symptoms I was experiencing could be related to the cancer.
Even when the emotional symptoms changed to physical ones, I continued to attribute them to stress. My back began to hurt in mid-November. I remember making a student laugh in class. He saw me holding my back and asked what was wrong. "The stress- monkey is on my back!' I quipped . He laughed, saying he'd never heard that expression, but as a baseball player with frequent aches and pains, he could certainly relate to my pain. The pain seemed so familiar, like pulled muscles and strains I'd had over the years. Why just the week before my friend and colleague, Pete Yaun had remarked on what I thought was muscle strain in my neck. "Why are you holding your neck like that?" Pete asked. Later, another friend, Jeanne Sink was to remark that when we had been on a trip together to a conference in Denver and had stolen a day to hike in the Rockies she noticed that I was holding my back as I went down the mountain. But for some reason I never let myself imagine that these symptoms were indicators of a serious problem. Within a week I would find out what was wrong with my back was no playful monkey, but rather an Albatross that would become a constant in my life, weighing me down with pain and worry.
The rest of the fall was filled the "finding out" and beginning new treatment. One week before Thanksgiving I experienced such severe back pain that I did what I had heard prescribed for other back pain sufferers--I lay on the floor with my back flat. The only problem was that when I tried to get up, I literally couldn't. Crying in pain, I asked Alan to call my brother-in-law, a rheumatologist, who suggested three things: Take four ibuprofen, put ice on my back, and let my oncologist know about this. The first two I did, enabling me to finally get up off the floor. But I put off calling my oncologist until the next day. He and my brother-in-law agreed there was a good chance my own diagnosis--stress induced muscle strain--sounded reasonable but a bone scan would set everyone's mind at rest. One was scheduled for Monday.
Monday's bone scan was not definitive. It showed "something," but the "what" wasn't clear. An MRI (Magnetic Resonance Imaging) was the next step. My oncologist said that from the bone scan there was a 50% chance it could be an early form of arthritis and he hoped it was. I called several friends, including Wendy, whose husband Don, exactly my age, does, indeed, have arthritis. I joked with Wendy and others "We're hoping it's only crippling arthritis!" Still, I didn't believe this was cancer-related. But is was.
The MRI, and subsequent ones, revealed the cancer had metastasized almost from top to bottom of the spine, all the way down to the lower lumbar and even into the pubic bone region. What the team of doctors, which now included the radiologist who read the MRI and a radiation oncologist, concluded is that I was one of the rare people for whom a bone scan was not as predictive as it is for most people. Rather than considering this new finding as a recurrence, the consensus was that the cancer was probably in my spine when I left the hospital after surgery in December '91, but the bone scan I had then failed to reveal it.
With this new information came a new diagnosis--Metastatic Breast Cancer--for which there is no cure. The immediate decision at hand was what to do about two impending trips. We received my new diagnosis on the Tuesday night before Thanksgiving. On Thursday I was scheduled to fly to Alexandria, LA, with my mother to a family reunion and then I was to go on alone to Dallas to visit my Aunt Elizabeth who, herself had recently been diagnosed with cancer. Alan and Jennifer had decided early in the fall to forego the visits with my family and head up to Chetola. The following weekend Alan and I were scheduled to meet Diane and Paul Mendelson in New Orleans to celebrate Paul's 50th birthday. We decided not to cancel any of these trips; there would be plenty of time later to forego travel. My radiation oncologist urged me to wear a neck brace and treat myself as if I had a cracked disc. Actually one of my discs was compressed and radiation was to begin immediately upon my return from Dallas. He warned me not to pick up any turkeys or babies! I'm not sorry we made the decision to take these trips, even though it meant postponing the real "coming to terms" with the implications of my new diagnosis. Also, I decided not to tell but one person in Alexandria about the new diagnosis, since part of the reunion was to celebrate my cousin Sonny's 65th birthday and there was no reason to put such a different light on the weekend.
When I left for the airport on Thanksgiving morning, Jennifer gave me a note and asked that I wait to read it until the plane had left the ground. With Jennifer's permission, I share her comforting words to me:
I love you so unimaginably much that I can't imagine life without you. So I'll try very, very hard not to, ok? You are the bestest friend, mother, and boxing partner ever. I'm glad you're on the plane going west and we're in the car heading north. I'll take care of my daddy--your "Mr. Al." We'll (I'll ) not mope. We'll go the bagel place & to Main St. in Boone. We'll go on long, long walks in the crisp (maybe freezing) day. I'll rub his back every day. We'll all come back from our various places & be strong for you. That's what everyone needs to try to do don't 'cha think? If your hair does fall out again, can I Mohawk it for you? The less hair the better to rub your head, my dear! Definitely you should dye it. We are a mother daughter team who does everything together, right? So, when I re-dye my hair, you can borrow the rest of my dye, okay? Parles bonjour to everyone there. Take care of yourself. Don't pick up any turkeys (you might eat the whole thing! !) Don't worry about losing/gaining any more weight. Personally, I'm happier the more there is of you. Have an awesome ultra cool bogus radical trip!
I love you more than I can say.
Over the course of my illness I have received literally hundreds of notes and cards of encouragement, but none has meant as much to me as the note from Jennifer.
Upon my return from Alexandria and Dallas, I began a series of treatments intended to extend my life--radiation, new rounds of chemotherapy, and, for the first time, professional counseling and support groups. My new songs were those of lament.
Jan 31, 2013 - Early palliative care clinic visits, integrated with standard oncologic care for patients with metastatic lung cancer, emphasize symptom management, coping, and psychosocial aspects of illness, according to research published online Jan. 28 in JAMA Internal Medicine.
Nov 23, 2014
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