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 February 13, 2004
The last two weeks have been like a roller coaster ride, steeper and higher than the Colossus or Revolution at Six Flags Magic Mountain or the Matterhorn at Disneyland. Days of incredible highs were followed by stomach lurching lows, twists and turns of my mind flung me from side to side. But, so far, I’m still safely in the car, pinned by the metal bar of hope.
January 28th, I began taking Thalidomide; twenty-eight beige pills in a blister pack with a $1,000 price tag. Thank God for Blue Cross Blue Shield, as my co-pay was just $50. My roller coaster ride dropped a few hundred feet when I read the detailed information leaflet. Potential side effects include permanent numbness in my feet, fingers, and mouth. Great; I’ll kick things and bruise my toes, type on the keyboard with what feels like sloth nails, and drool while I eat. That’s OK. If I can get to where I want to go, manage to type with one finger at a time, hold a fork and taste the food, I’ll be a happy girl. The tingling and numbness have already begun; it is such a strange sensation, like when your hand falls asleep followed by the prickly rush when the blood surges back in – only the blood doesn’t rush back. Sometimes when I rub lotion in my hands, it feels like someone else’s hand in mine. Freaky.
On January 29th, Debbie Taylor and I visited the local branch of the American Cancer Society, a wonderful organization that offers free wigs/hats to cancer patients. We quickly passed over the wigs and spent our time digging through bins of turbans, scarves and wraps. Please enjoy the attached pictures. You can see three we rejected (for obvious reasons) and the one I chose. I am the proud owner of my first cancer hat. And, unbelievable, a hat with a flower on it! A first for everything! Our search for head coverings reminded me that Annie Dillard wrote something about how we would wear crash helmets rather than fancy hats to church – if we really understood the God whose presence we enter.
The new camel-colored hat, plus two berets (one red, one black), were timely purchases. My hair started falling out on the 23rd; by the 29th, as the roller coaster picked up momentum, strands of hair flew through the air like dandelion tufts. As I dried my hair, half of the brushed hair stayed with my head; the other deserted me for the brush. Very discouraging. OK, truthfully, I cried. Dr. Murphy told me it is “normal” to mourn the loss of hair; it’s so personal and it makes the cancer so real. So, I allowed myself to reflect. I was diagnosed with multiple myeloma on December 29th, exactly one month ago.
I wish I could roll back the calendar, back to December 23rd, relaxed, laughing, and fussing with Jim and the boys. Every Christmas, our family sits for an annual photograph with photographer/artist Ben Pearson. Since 1994, we’ve worn black shirts and stood before the same backdrop. Attached is a print of the four of us, plus Jim’s parents, Gordon and Sharon, and his sister, Dainette. That night, we were as happy as we look in the picture. Little did we know what was in store for us in just six days or how thoroughly the lives of all the Chaffees would be altered. We could not have imagined, then, how deeply you, our extended family, our friends, and the family of business associates would feel it with us.
For me, the dizzy roller coaster effect sometimes pulls time along the track, one cog after the other, as if the hands of the clock are straining to make it up a hill, slow and laborious, handing me the illusion that I’ve been climbing through these seconds and minutes for months now. On other occasions, I swear that I’ve known about this cancer thing for only five minutes. Doctors’ names, prescriptions and procedures, appointments and possibilities, fluids drawn and fluids inserted, technical terms and treatment options, needs and wishes link together like coaster cars flying around the track. I’m hanging on, but what a ride! I am still reeling; both from the shock of the diagnosis and from the prescribed steroids. I take ten Dexamethasone pills (steroids) a day for four days; and by day four, I am a total ditzy airhead. I should get a blonde wig. (Kidding. Apologize.) The tiny green pills really do throw me for a loop and I’m grateful to be off of them for the four days of recuperation before taking the next set of pills.
On February 3, Jim and I met with my stem cell replacement doctor, John Greer, at Vanderbilt. That is, the cells are replaced, not the doctor. The meeting was interesting and difficult. The worst part was at the end, when a nurse drew 12 vials of blood. Yes, twelve. Of course, it was disaster. The nurse filled a few vials from my right hand before two veins collapsed. Then she moved to my left hand, barely filled one vial before that vein deflated. She asked me if I wanted to come back another day – NO! So after poking and prodding, which I love so much, she finally got a vein to flow while two other nurses handed over vials so the main nurse didn’t have to move or change positions. It was quite a production. I left with four bandages and two totally black and blue hands. I’m learning that my darkest moments are necessary for the dawning light. Those 12 vials of blood will tell the doctor what he needs to know to properly treat my myeloma. Small price to pay for the process of healing. I found comfort in the promise of Isaiah 58:11: “The Lord will guide you continually, and satisfy your needs in parched places, and make your bones strong…”
As with so many couples in stressful situations, Jim heard Dr, Greer say one thing; I heard something totally different. Jim left the office feeling hopeful; I left depressed. Having talked it over, we do agree that the doctor said that each person’s experience of myeloma is unique and consequently it’s hard to make a predictable prognosis. My cancer is advanced but Dr. Greer thinks I will do well with one autologous transplant (meaning; they take my blood cells, treat them, and re-insert them during a 30-day process). Here’s where it got funky for me; statistically transplants prolong survival, but normally most patients relapse in three–five years. The roller coaster went air borne. Only about 10-20% of all patients avoid relapse. I HATED those statistics. And we all know that I am NOT NORMAL, and the rules NEVER apply to me – because I’m special! I know the doctors have to be honest and tell the “truth” – but my truth has rarely been found under the heading “of course.” I INTEND to be numbered in minority and I INTEND not to relapse – not until I’m at least 75 or 80; until I’ve seen my sons married and held my grandbabies. I have PLANS for my future; several more books to write, a return visit to my New Zealand family, sightseeing around the world, and embracing loving friends and family.
I read a billboard sign outside a church last week that struck me: “God values who you are, not what you do.” I’m trying to learn and live that. I can’t please God by writing more books or speaking to larger crowds; I can please God by mirroring the love, compassion, mercy, and kindness that God bestows to me – to all of us
On February 5, I finally gave up one fight. I cut my hair. I made an appointment at Trim, the world’s best salon. Surrounded by dear friends Debbie, Diane, Michelle, Elaine and John (manager of Trim), my hair was cut short. I did fairly well (meaning; I cried just a little), until they turned the chair to the mirror and I saw my reflection. I sobbed. My hair was so thin and sparse; I felt so ugly and almost ashamed, I cried in my hands. But, still, I couldn’t bring myself to shave it all off. How wonderful to be loved and patted and held by friends who love you at your worst, at your weakest moment, and assure you that hair will grow back and that beauty is more internal than external, and that they will love me with or without hair.
By Sunday, Feb. 8, my head looked like a plucked chicken. I had bald spots…not at all sexy or cute. Short wisps of hair were congregating and scampering like dust balls all over the house. “Now,” I said to Jim. “Do it now.” My dear husband got out his clippers, the ones he uses to shave his head once a week, and he buzzed me. I think he enjoyed it a little too much. I could see my reflection in the kitchen windows and, yes, I cried. I am not Sinead O’Connor; though I do admit my head does have a nice shape. But that doesn’t mean I want to display it to the world.
I’m going to make a celebration of this. My baldness means the chemo is working and the cancer is getting its butt kicked. Melanie, my stylist at Trim (and owner), fitted me with some Raquel Welch wigs; they were a hoot. I tried a blonde one and looked hideous. Melanie’s going to order more until we find just the right colors and styles. Again, how comforting to be loved when feeling unlovable. When I sat in the client chair, Melanie slid off my hat, gently rubbed my stubbly hair, and then held my head in her cool, strong hands. It was nearly like the presence of God when she leaned over and tenderly kissed the top of my distressed scalp. “Next year, Janice, we’ll be styling your own short hair,” she promised. At a time when poor biblical Job was at the bottom of his heap, in a real sad mess, God suggested that he “deck himself out in majesty and dignity.” Well, this was a moment of my receiving majestic love, and learning that love can hurt and heal at the same time.
The best part of this recent roller coaster ride was the presence of my mentor Barbara Pine. She arrived late Sunday night, witnessed Jim’s expertise with electric clippers; drove me to the oncologist’s on Monday for an IV of Zometa (an osteoporosis drug to strengthen bones); shopped with me for underwear and makeup (we never did find the right pair of shoes – for me); and laughed with me and Melanie over some of the wigs. Barb is wise and Godly and intuitive and truthful. She made me answer some tough questions and face the reality of my situation. But she also loves me beyond reason, which I sometimes cannot comprehend. I could breathe easier with her in my home; I felt safe in her company. She was, is, and will always be the image of God to me, a representation of Christ in human flesh. If I grew up to be half as wise, or studied, or intelligent, it would be a miracle. So I don’t plan on it happening. Though she does make me want to try.
If it is true that I’ve done “so well” – as many of you have written – it is because of your prayers and support. Jim and I continue to be overwhelmed by your generosity and your offers to help feed and assist us. It’s funny to me that a woman of words (or, a woman who tries to effectively write words) stammers and stalls as she seeks a better way to express gratitude. But, while my tears show it and my trapped breath feels it, I am at a loss to say it well. We are so very humbled.
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.” |
