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 May 29, 2004
Here is my report of the past week, another seven days intermingled with good and bad - but good absolutely triumphed over everything that went wrong!
Thursday, May 20
Elliott, our beloved first-born son, started his day with some anxious moments in the Boston airport. Jerry Spurlock (generous friend from Colorado) had donated flyer miles for his flight home but when Elliott checked in at the airline counter, he was told there was a reservation in his name, but not a confirmation. An hour of pure drama followed: AT 6:30 a.m. Nashville time, Elliott called me in a panic. It was 5:30 a.m. in Denver when I woke Jerry’s wife Teresa who said Jerry was in Baltimore on business and gave me his cell number. Jerry immediately answered (thank you!), heard the problem, called United to confirm the reservation, learned that the airline required his presence at the Baltimore airport to sign a paper, which, once signed, permitted the computer to assign Elliott a seat on the next plane through Chicago, landing in Nashville a few hours after his original arrival time. Whew – what an ordeal. Jim retrieved our son while I was hooked up to an IV at the oncologist’s office. During the last half of the treatment, I begged Nurse Kathy to hasten the drip so I could go home and see my child. (She did.)
After greetings of hugs and kisses, Elliott and I stood apart and looked at each other. I saw a MAN - not a child, not a teen, but a MAN. I’m not old enough to have a man-child! He looked at me very carefully, determining whether my cancer-riddled bone marrow and blood had shriveled me to a raisin or had made an obvious physical difference. He said, “You look good,” which I didn’t even try to interpret. About thirty minutes later, he casually asked, “How short is your hair?”
“Come see for yourself.”
He walked over to my chair, pulled the silk scarf off my head, instantly said, “That’s not so bad,” and proceeded to rub the soft, inch-long fuzz on my scalp. I think he was relieved not to find me bald as a cue ball - or Jim.
Within minutes of Taylor’s arrival home from work and his embrace of Elliott, the decibel level in our house more than quadrupled. The CD player’s speakers visibly vibrated, the walls shook. I couldn’t hear myself think (which isn’t all that unusual since the steroids make it difficult for me to think in silence). Boys’ clothes magically draped themselves over chairs; shoes hopped across the floor to tip over on carpets or stack in mismatched pairs near doors; backpacks and book bags content spilled on tables and counters. The presence of both boys was evident by the cluttered mess – like old times. I loved it.
Friday, May 21
The boys wanted to go clothes shopping – without me. Ouch. I handed over way-too-much cash and asked for receipts (give me credit for trying). After at least five phone calls from various stores and a request to eat at their favorite Chinese restaurant, the boys returned - with receipts and three items of clothing: two shirts for Taylor, one pair of pants for Elliott. All I can say is: the boys have fine taste and limited resources. They’re becoming more and more cognizant they each had better get a good education to earn good salaries as adults if they mean to dress in the style to which they love being accustomed.
Sunday, May 23
Taylor’s Graduation Day! “Uncle” Craig Ellsworth flew in early and arrived at the house in time for breakfast. Taylor left around 2:00, looking quite resplendent in his black cap and gown, new white shirt (bought the day before) and one of Jim’s Hugo Boss ties. The rest of us drove to the church where the ceremony was held and impatiently waited for the 3:00 program to start. Twenty minutes late, the traditional graduation processional began to play, and I began to cry. Dang! Just like a real mother – grieving that her baby was all grown up!
When Taylor’s name was called, the crowd cheered, and I snapped pictures as he walked across the stage, hugged each of his teachers, then accepted his diploma from Mr. Ford, whom Jim and I consider not only a great man but the state’s best school principal. When Taylor returned to his seat, I turned to Jim and said, “Now we can exhale.”
How bittersweet is the juncture where one era ends and another begins. Today, Taylor’s high school years end, tomorrow he becomes a full-time employee of a landscaping business. In late August or early September he will join Elliott in Boston, visit all the local art colleges, work on his portfolio, then enroll in the school of his choice for the spring semester. With both boys in Boston, Jim and I will find ourselves fluttering about in an empty nest. Praise God!
Attached are some family pictures from Taylor’s graduation. I wore a wig to the ceremony, the first time Elliott had seen me in one. Without hesitation he commented that I looked “much better” in the scarves. “Mom, ditch the wigs,” he said. “They’re not cool.” Ah, the honesty of children – they are so direct and impervious to the listener’s ego. ~ ~ ~
The next five days were spent in doctor’s offices and grocery stores. Daily, I’d wait in a reception area, write out a new grocery list, see the doctor, and then make the rounds to Costco, Kroger, and Wild Oats. Our family loves to eat – and Elliott needed to be fed as he had been living on Ramen Noodles for the last two weeks of college.
Monday, May 24
Elliott drove me to Dr. Murphy’s to witness my IV of Velcade, the non-chemo drug treatment which seems to be working wonders attacking the multiple myeloma. He stayed for a few minutes, saw enough, then escaped to Waffle House for breakfast. (Why do teenagers love that fly-infested, dirty, limited-item menu, gross eatery? Not that I have an opinion about the place!) When he returned two hours later with a Sonic Burger for me, it was in time for the bandage on my PICC line to be changed. Blood had seeped and crusted from the hole where the line goes into my arm (just above the bend in my right elbow) and Nurse Susan struggled to pull the tape off the plastic attachment to the line and the gauze padding underneath. She tried to be gentle, but it did hurt a bit as she tugged away. Elliott watched from a chair on my left, but even seated, his knees buckled. He patted my hand to comfort me, but I think it was more to keep himself from passing out. I told him he could wait in the lobby, but he stayed, pale and twitching, groaning through clamped lips. Finally, the tape was off, the mess cleaned up, and a sterile bandage applied. All was well after a three-and-a-half-hour visit.
That night, we four Chaffees and Craig and Taylor’s girlfriend had dinner at a new sushi restaurant – our favorite food – and we stuffed ourselves. How wonderful as parents to enjoy the company of our children over a delicious meal, to laugh, to eat off each other’s plates, to start sentences with “Remember when we … “
After dinner, we did something so stereotypically Southern, I’m embarrassed to admit it. A block away from the sushi restaurant, a red neon light glowed from the Krispy Kreme parking lot – the signal that freshly made donuts are rolling off the conveyor belt. Taylor whipped his Blazer into the parking lot and Craig’s rental car swiftly followed. We all rushed inside, excited as little children for a treat. The lady behind the counter immediately handed each of us a hot, sugary, oily glazed donut. One was enough to satiate me for at least a year. Elliott, now a devoted vegetarian, derided our unhealthy enthusiasm, then, under great familial pressure, took his free sample and scarfed it up. Another memory to store away until a future conversation around a dinner table…“Remember Taylor’s graduation dinner and the donuts for dessert?”
Later that night, dressing for bed, I noticed a faint rash on my stomach and back, an irregular pattern of little pink bumps, almost as sweet as dotted-Swiss fabric. Oh, please, I thought to myself, not another problem. I should have known better.
Tuesday, May 25
I awoke to find a few perfectly round, bright red blood blisters just under the skin on my left arm. Trust me, not attractive. The pink torso rash had spread and now itched. I made the familiar trek to Dr. Murphy’s office to show off my newly acquired side affects. Dr. M. identified the rash as an “allergic reaction.” But to which drug? The yellow antibiotic I had been taking since I left the hospital on May 13 or the Velcade? What caused the red circles? Dr. M. determined the blood blisters were Vasculitis – an inflammation of the blood vessels. Veins large and small were bursting, allowing blood to surface to the skin; possibly an effect from the Velcade or another infection. “Dear God, please, no,” I silently prayed.
“I’d like you to go the hospital for a few hours for an IV,” said Dr. Murphy.
“How many hours?”
“Maybe four,” which I interpreted as six to eight.
“My son is home from college,” I reminded him. “Since it will take at least a day to get the results from today’s blood samples, why don’t we wait and see what they show?”
Dr. Murphy is a kind soul and he excused me from the hospital’s outpatient services. Kind he is, but not unwise. He wanted another opinion so I was sent to a dermatologist. By that afternoon’s appointment, more red spots had surfaced, plus an especially ugly one – a huge red circle with a small black dot in the center – a fleshy target. It looked just like the pictures shown on television here in the South, with a voice-over warning for residents to stay out of tall grass and check for ticks before bed. My rampant thoughts concluded that I might die not from cancer but from debilitating Lyme disease.
The dermatologist biopsied the new lentil bean-sized spot on my right wrist and the huge bull’s eye, then closed each cut with two stitches. With gauze and tape applied, I was sent home to wait for the lab results – which, I knew might take several days, even though the doctor said she would put a rush on the order.
After a stop at Costco for fruit, fish, and packets of socks, I went home, frustrated with yet one more thing gone wrong. Actually, two things gone wrong: an allergic rash and Vasculitis. How many more side effects can my body endure? Are my cancer counts going down? Are my white cells going up or have they stabilized? Am I winning this battle? Why so many auxiliary disasters?
Wednesday, May 26
Back to the oncologist’s for lab results and more blood drawn. The rash seemed unchanged, which meant I probably wasn’t allergic to the Velcade. Dr. Murphy told me to throw out the last six packets of the mustardish antibiotic and wait to see if the rash totally disappeared. Waiting – still not one of my best attributes.
Dr. M. checked out a few faint bruises that had appeared on my legs. “Probably caused by the Coumadin,” he said. Coumadin – the blood thinner I take every night - guards against the PICC line clogging, but allows easy bruising. “Stop taking the pills,” he said. I nodded. He added, “I’d like you to go to the hospital today, just for a few hours as an outpatient, for an IV and a chest x-ray. We don’t want you to get pneumonia again.”
I shook my head no. “Remember, my son is here. If I don’t absolutely have to go, I would rather wait for today’s lab results.”
He was not going to let me off the hook so quickly this time and my emotions sensed the capture immediately. I felt caught in a tidal wave of emotion and started to cry. I asked him if he would talk to Jim. He nodded yes and I dialed Jim’s cell phone. When he answered, all I could say was, “Talk to Dr. Murphy.”
The two most important men in my life (at this moment) discussed my most recent developments. They both agreed that my condition wasn’t life threatening and that admittance to the hospital could wait until Sunday, or Monday or Tuesday, any day after Elliott’s Saturday departure. By then, it might not even be necessary. (I live in hope.)
Thursday, May 27
I woke up with blood covering my side of the white sheets. During the night, the two biopsy incisions had bled profusely. I called Dr. Charity McConnell, the dermatologist, and scheduled a visit to her office.
Good news: the allergic rash was fading and it was the abundance of Coumadin that had kept my blood from clotting at the biopsy sites. Dr. McConnell numbed both wounds and applied some miracle medicine. The bleeding instantly stopped, but our habit of “let’s just make sure” caused us to wait 15 minutes before leaving the office.
Bad news: Yesterday’s red spots had enlarged and more had popped up. Overnight, huge bruises surfaced on both legs from knee to ankle and over my entire left arm. (I figure if I must experience them, you might as well hear about them!) They were not dainty or feminine, but ranged in size from marbles to golf balls to tennis balls. Most of my left shin was a smear of purple with underlying red and green. I looked like I had been pummeled at close range in a Paint Ball game. The ten or so very noticeable stains on my arm ranged in color from grapes to eggplant to a variety of ripe plums.
This, I suppose, is what cancer does to a person, or, specifically, me. It causes a certain immunity to how things really look, how things actually are: missing hair, swollen limbs, small and large bandages, itchy bumps, bursting bruises…they’re all part of the package until some moment brings me back to how unusual these things are in a non-cancerous person. I was wearing a short sleeve shirt in the grocery store when I realized that people stared at me then adverted their eyes. Only then was I aware of how “cancer-y” I looked with a silk scarf tied over an obviously bald head, remnants of a pink rash on my chest, violent purple circles cascading down my arm and legs, a beige bandage on my left wrist, and a white mesh sleeve securing the PICC line. I fit the profile of one laughable or one pitiable possibility: someone terribly color-challenged or an abuse victim. I am being abused by a horrible tormentor named Cancer.
Friday, May 28
How I wish insurance reimbursed mileage. I drove back to Dr. Murphy who would determine if I should take the last dose of Velcade in this cycle, which, yesterday I had skipped. The conclusion was, “No.” Once again, too much stuff was happening in my body. Lab results showed that my potassium level was low so I was given a new prescription for a mega-dose of Vitamin K, yet another brand of steroids (which I hate because they make me dizzy and make my ankles swell like balloons), and, oh yes, another antibiotic.
Dr. M. was surprised at the vicious bruises that had appeared in just two days. “You’ve stopped taking the Coumadin, right?” “Yes.” He examined the sites a bit more and came to another conclusion. “These may be a different form of Vasculitis.” He paused. “I almost don’t dare say this, but I’d like you to go to the hospital for an IV.”
“Can’t you come up with anything else to say?” I teasingly and seriously replied.
He laughed almost embarrassingly. “OK,” he bargained. “Enjoy the rest of your time with your son, but be in my office Tuesday morning for a bone marrow extraction so I can check your cancer level. I’ll make an appointment for you with Dr. Greer (the stem cell doctor) on Thursday. Then we will determine if you should begin another round of Velcade and when you can begin the stem cell transplant.”
So, there you have it: the newest plan. I’m exhausted, fearful, tearful, and yet ready. This is what I must do to survive and triumph over multiple myeloma. I’m ready for this era to end and for the next to begin.
Saturday, May 29
Jim and I drove Elliott to the airport and I cringed when I heard him refer to Boston as “home.” But while he stayed in our home, we had a fabulous time. My child was very sensitive to me and tried very hard to be attentive and caring. I was proud of him.
Taylor enjoyed having Elliott here, evidenced as they punched the daylights out of each other and called each other “brother.”
Jim was a proud papa of his sons – who are, both for good and ill, so like him. And the poor dears also inherited some of my good and bad traits. What a double burden they bear.
But, I am reminded, we each carry good and bad within us, and, consequently, we each are required to choose which traits will triumph. Having our boys as the focus of our week was such a joy. I delighted in their presence; a parallel to how thoroughly I am, we are, loved by our heavenly Father – that God tolerates the shoes of immaturity collapsed beside the door; loves the noise we make, and enjoys watching us devour the feasts of experience that nourish and/or delight. Good and bad, love and sorrow, fear and fun…it’s all been present in this week of celebration and challenge. And I am aware that to some degree or another, you, too, have known the juxtaposition of life. Hopefully, love, joy, and peace have triumphed.
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.” |
