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 June 13, 2004
Over the last two weeks, the equilibrium of my life as a woman, wife, mother, and cancer patient twisted into a messy knot and I looked for a way to unravel such intricate trouble. But, day by day, I’m learning that the tangle of my life still must be treasured as a whole. ~ ~ ~ When I was a young girl, my paternal grandmother was the subject of a rarely discussed “family secret.” It was whispered that she was half Native American, which in our Arizona way of thinking conjured up visions of dusty reservations, blanket weaving, velvet skirts, silver and turquoise jewelry. And a “bad” reputation.
Back then, the shame or silence surrounding her heritage (or mine) meant little to me. Now, as an adult, how I wish I could sit beside my grandmother and ask her about her life, the name of her tribe, how her parents met and died (she was orphaned, raised by her grandparents), what traditions she kept or abandoned. What I do know is that I resemble my father, who resembles his mother whose given name was Dovie.
Before I was diagnosed with cancer, I intended to research my family tree. Later, when I am well, I very much intend to do the trace because more than ever I want information about my ancestry. Multiple myeloma forces me to confront my own mortality. Before my life ends (whatever my age or cause), I want to know where I came from and whether my existence and accomplishments matter.
In the opening dialogue of the movie Troy, Achilles’ mother prophecies to her son (approximate quote), “If you remain here, your wife and children and grandchildren will know and love you. But your name will be lost to the next generation. You were born to be a great warrior, and if you fight in Troy, your name will be remembered for a thousand years.” Later in the movie, Achilles pumps up the soldiers’ spirits by saying, “Immortality is yours. Take it.” He’s going for greatness “out there.”
Both a child and a mother, I’ve been thinking about the choice of “here and there,” of “some” influence and “great” influence. Would specific knowledge of my grandmother’s ancestry have made a difference in my life? Should my fair-skinned, pale-eyed children learn that part of their familial history belongs to our national history, can it effect or influence their futures?
You who know me know that I love the Sisters albums, the writing and speaking and exchange of life stories with people “out there.” But now it’s as if I’m holding paddles at both ends of the table in a mental game of ping-pong. I slam the writing/speaking ball across the table and my thoughts scurry to the other end to return a shot with a spin on the question, “Will my work ‘out there’ provide a worthy legacy for my sons ‘here’ as they consider their own relationship with God?”
I tap back the question, “Why does it matter to me that my younger son see that he is the “spitting image” of his Irish great-great-great-grandfather?” Their resemblance is evident in an old sepia photo my mother sent to us. I work to keep the ball on the table because ties to the past seem to be bearing down on my choices for the future.
This renewed interest in my heritage and mortality raises the question of my spiritual legacy. Will my faith be a family secret or will its influence openly belong to my children, to their children, and theirs? Will old photos of me reflect the image of God? Generations from now, will evidence of my faith be seen in my descendants?
Author Julia Cameron moans, “We are too busy living a life to have a life worth living.” Assessing my past, I passionately believe that God enabled me to produce albums, write, and speak, which I am eager to resume. But Jesus told us not to “worry about tomorrow, for tomorrow will bring worries of its own.” That has certainly proven true in my cancerous life, which continues to tangle worth into worry, good days into bad. Each day brings a new physical reaction, a side effect, or some schedule change to challenge the enjoyment of my husband and sons, the company of good friends, and the privilege of life itself. This is what I know today, June 13th: I still have a long, difficult journey before reaching recovery/remission and I know that my survival is dependent “here,” my amazing doctors and medicines “out there,” and the ever present prayers, faith and support from those who love me and whom I am privileged to love.
Tuesday, June 2:
Bonnie Keen King drove me to the oncologist’s office, where I was scheduled for an IV infusion of Velcade and a bone marrow aspiration. Mercifully, the procedures were canceled, so Bonnie and I stretched a Japanese lunch into a three-hour talk-fest, then, reluctant to leave each other, added another hour in an ice cream parlor. We laughed and cried, reminisced and cherished our 15-year-plus friendship. It was a great day and proof, again, how cancer has altered my perspective on what’s truly important in life. Before cancer, I almost never allowed myself the time to do “girly” things; I didn’t usually “do lunch” or join any girls’ night out. (Yes, I am aware of the irony of being so busy recording, writing and speaking about women’s relationships that I rarely took time to practice what I preached.) With cancer, I’ve come to cherish the presence of girlfriends. Whether our time is spent driving in the car or sitting in doctors’ offices or instant messaging on the Internet, they have steadied and sheltered me in this devastating storm.
Thursday, June 4:
Dr. Greer (stem cell) and I reviewed my past reports, numbers and categories highlighted in neon colors on his computer screen, which reminded us of all the things that had gone wrong during six months of treatment: clogged port-a-catheter, blood clots, infections, pneumonia, allergic reaction to antibiotics, removal of the first PICC line, skin rash from Thalidomide, hallucinations from sleeping pills, swelling from steroids, the most recent bruises from Vasculitis, and the resurgence of cancer during the week I was off all meds. Consequently, the doctor concluded that my cancer is so aggressive that the harvest and reinsertion of my own bone marrow may not be successful. He thinks I will need a second transplant (in September or October) using bone marrow from a donor.
That was not good news to me. Even before I left his office I started crying and was an emotional basket case by the time I reached Dr. Murphy’s office later that after-noon for an IV of Velcade. Dr. Murphy listened as I repeated Dr. Greer’s assessment, but in contrast, he was much more optimistic about the effectiveness of the medicines and the successfulness of the bone marrow procedure. Initially frustrated and confused by the varying opinions, I left Dr. Murphy feeling a bit comforted.
Week of June 7 - 11:
I’ve read the New Testament book of James several times this week and have wished I could memorize all five chapters as it seems every word was written specifically for me. Instead of feeling guilty and convicted, I’m determined to apply the lines of instruction to my life:
“From the same mouth come blessing and cursing...this ought not to be so.” “Be quick to listen, slow to speak, slow to anger.” “You do not even know what tomorrow will bring. What is your life? You are a mist that appears for a little while and then vanishes.” “If any of you is lacking in wisdom, ask God…and it will be given you. But ask in faith, never doubting.” “The testing of your faith produces endurance; let endurance have its full effect, so that you may be mature and complete.”
Those lines challenge my innate nature. I’m aware of my lack of wisdom and admit I’m often struck by doubt and, just as often, resent the expectation of endurance. Even with the verses from James ringing in my ears, my carnal vocabulary responded to some of the events of this week. For five days in a row, I pushed through the doors of the oncologist’s office or the hospital; each day expecting an answer, an explanation for my latest medical calamities (constant trembling, spells of heart pounding, drenching sweats, and clear growths on my eyes).
Monday: The PICC line didn’t work properly at the oncologist’s office. Nurse Susan was able to inject saline through both ports, but couldn’t withdraw blood for lab tests. ‘Dang. Phooey,’ I silently said. That was mildly bad news, but not serious enough to overshadow the company of Jennifer Cooke. We former California girls talked non-stop while the IV dripped Velcade into my PICC line, we sweltered in the humid heat waiting in the pharmacy’s drive-through lane, and deliberately ate only half our lunch so we could talk more and take leftovers home for dinner. I loved discovering our similarities and differences, and encouraging each other’s future plans.
Tuesday: Returned to the oncologist’s to check the PICC line because my right arm was a bit swollen and discolored. ‘Shoot. Crap.’ I flashed back to January when the clogged port-a-catheter in my chest was removed, when a slimy strand of blood clots floated in my swollen, blue left arm, when recovery required a week’s stay in the hospital. ‘Please let the PICC line work for just a few more days,’ I prayed. Dr. Murphy sent me to the hospital (thankfully, it’s next to the doctor’s building) for an ultrasound of my arm and a dye-test of the PICC line. The radiologist found a tiny blood fiber attached to the end of the plastic tube, which isn’t all that unusual. He explained that the fiber floats out as fluids are injected, but withdrawal creates a vacuum and the fiber closes the hole at the end of the line. He said the PICC line could stay in my arm in order to receive the last two injections of Velcade. ‘Yeah. Relief!’ The schedule holds!
No blood clots were seen in the ultra-sound. ‘Thank God! ‘ Lo and behold. I became a living example of doing what James cautioned us not to do. In the span of a few hours, both cursing and blessing flowed from the same mind – mine.
Wednesday morning, half of my face was numb, starting under my right eye, sweeping down my cheek, spreading to my nose, lips and gums. It felt, and still feels, like a dentist’s injection of Novocain gone awry. Dr. Murphy gave two possibilities of the cause: peripheral neuropathy, damage of the nerves, a side effect of Velcade which may be permanent; or, a tumor growing somewhere near or on the nerve. ‘Oh dear God, no, no, no. Not a tumor; not permanent numbness.’ I held my emotions intact as I walked from the oncologist’s to the hospital’s radiology department (where I am now on a first-name basis with all the technicians) and gave myself a pep-talk on the way: ‘I’ll be ok; this is a temporary side effect. I’ll take these tests because this is what I must to do to survive.’
Thursday: Dr. Murphy’s review of yesterday’s CAT scan revealed no obvious cause of my facial numbness - no tumors and no myeloma-drilled holes in bones. Reports from the blood labs will come Friday. ‘Sigh. Another wait. I hate waiting. What was James thinking (I wondered) when he wrote, “The testing of your faith produces endurance; let endurance have its full effect.”’ I’m trying, Brother James.
Friday: The blood counts dropped in number, indicating the myeloma is being decimated by the Velcade and steroids. Good news! Dr. Murphy and Dr. Greer consulted over the phone, both mystified by my facial numbness. Disappointing news. Something is obviously wrong, but what? To find an answer, I’ll have yet another bone marrow aspiration and my first spinal tap on Monday, the 14th. Oh, God. A spinal tap? This is getting worse, not better. (The hilarious movie Spinal Tap came to mind and the number 11; my production won’t be as much fun.)
Sunday, June 13th: Couldn’t open my right eye when I woke up this morning. An infection caused the lid to swell and prompted a phone call to Dr. Murphy. He told me to take a Benedryl and to pick up prescriptive eye drops. And to take another steroid tablet. What else?! Can anything else go wrong? God, help me!’ My thoughts weren’t a tantrum, but more of resignation: This is what I have to deal with today.
Tonight, I prepare for this week’s plan (subject to change, of course). Tomorrow, when you most likely read this, I’ll probably be anesthetized, curled fetal for the two procedures – bone marrow aspiration and spinal tap. Tuesday - my last dose of Velcade and removal of the PICC line. By then, Dr. Murphy should have results from the previous day’s tests and, hopefully, will explain the cause of the numbness. Wednesday – a free day! Thursday, June 17th -Dr. Greer will repeat heart, lung, and kidney, and blood tests to determine if I’m physically ready to begin the stem cell transplantation. If my cancer is sufficiently contained, and if Dr. Greer thinks I’m ready, I’ll return to Vanderbilt Medical Center on June 23rd for the first day of a five-to-six-week stem cell procedure.
So, I continue to live one day at a time, accepting the good with the bad, bracing myself for change. Every day, I pray that cancerous cells will be destroyed, trust that the transplant will spur the growth of healthy bone marrow, and believe that the myeloma will stay in remission for many, many years.
Thank you for allowing me to lean on you – which I’m learning is not an admittance of weakness, but a privilege of grace. Thank you for carrying much of my burden so it never becomes impossible to bear. The apostle James is right: We do not know what tomorrow brings. But I know this: Whether joy or fear, good or bad, I brave it more easily because you, my brothers and sisters in my family of faith, are beside me.
Janice "All material, unless otherwise noted, are owned and copyrighted by Janice Chaffee and James Chaffee, © 2004, 2005, 2006. Permission is granted to forward e-mails, or print for personal use only. No portion of these updates may be quoted in part or whole in any published material or on any internet site without authorization from authors.” |
