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 June 29, 2004
Dearest Friends and Family,
My last update ended with both my whining about waiting and with the verse in Hebrews stating that Jesus sits at the right hand of God, waiting… God knows what it means to wait – and God knows how waiting rubs against the grain of my control issues. I waited all weekend for Monday to arrive.
When it did, I woke up with my right eye swollen nearly shut, even after a week of using medicated eyes drops. And, the right side of my face was still numb. I waited all morning for the results of last Friday’s MRI. When the neurologist phoned, her report was disappointing and inconclusive; the MRI showed no reason for the numbness, no new tumors were evident, nothing pressing on the facial nerve.
I called Dr. Murphy (oncologist) to tell him my eye had not improved. He prescribed a very strong and very large antibiotic – 875 milligrams in a white pill big enough to choke a horse. I gagged on each of the three I took and got rewarded with a lulu allergic reaction: a fever and a splotchy rash (multi-layered, bumpy, and itchy) on my face, down my neck and chest, on my arms. Aaarrrgghh! What a sorry sight: a swollen gimp eye, a numb cheek, a bloated, red, measles-type rash, burning hot face. (I certainly didn’t hear Stevie Wonder singing, “Isn’t she lovely, isn’t she wonderful…”)
Finally, in the late afternoon came the call from Dr. Greer’s office (stem cell) – the call I so impatiently waited for to confirm either the June 23rd or 30th stem cell transplant start date. Instead, those dates were canceled and I was told to come in on Thursday, June 24th, for blood labs, an EKG, a chest x-ray and full skeletal survey, and told to bring a 24-hour urine sample. They were concerned with the ambiguous MRI results and decided to run another thorough check before the transplant procedure.
So, once again, I waited. Thursday morning, Valerie Summers drove up our quarter-mile steep, and I mean steep, driveway. I climbed into her BMW chariot, fastened the seat belt, and relaxed along our leisurely route to the hospital. Valerie (blonde and beautiful enough to star in a car commercial, wisps of hair whipping in the wind) convinced me to take off my black silk headscarf and let the wind blow through my inch-long hair. The shake of my head did not result in the glorious effect caused by Valerie’s long locks, but imagination carried me right along. About half way to Vanderbilt, I said, “I have to get me one of these!” I meant a cool, sleek, expensive, foreign convertible…something to dream about and wish for in the future.
Imagination works in a convertible but is no longer necessary at the doctor’s office. It has all become very real and much too familiar. First-things-first: 14 vials of blood were drawn. Next an EKG, followed by the full body and chest x-rays. Then I met with Dr. Jagasia, a member of Dr. Greer’s transplant team, who reviewed all the results and concluded that my rash was not an allergic reaction to the antibiotic, but to the pill I was taking to prevent pneumonia. My eye is not infected, he said; it is swollen due to growing myeloma. The numbness may also be a result of refractory (unresponsive, resistant) disease. Dr. Murphy later confirmed the conclusions. Truthfully, I was not surprised. Disheartened, yes; wounded, yes; still hopeful, yes.
Forthright and kind, Dr. Jagasia stated these grim statistics: Myeloma patients who receive one autologous (collection of one’s own stem cells) transplant have a 21% survival rate at seven years. Patients who receive two autologous transplants, back to back, have a 42% survival rate at seven years. There is no “cure” for multiple myeloma patients who follow this protocol.
Patients who receive an allogeneic (cells collected from a donor) transplant have a 20% risk of death in the first 100 days, a 20-30% risk of death in the first two years, in contrast to its 25-30% cure rate. Total cure. In allogeneic transplants, the donor’s stem cells replace those of the patient, then healthily divide and do their job in the bone marrow, free of multiple myeloma. However, the doctor described a donor transplant as “brutal and risky.” Recovery is difficult, coupled with the fear of graft-versus-host-rejection disease, and a plethora of possible side effects (infection, organ damage, leukemia).
That information alone was hard to hear, but harder was hearing from Dr. Jagasia that “Those numbers are not accurate for you. They are for patients with normal myeloma. Yours is very aggressive.”
Based on that achingly awful truth, Dr. Jagasia said my protocol will start with an autologous stem cell transplant, and, when my body is sufficiently recovered, a second, allogeneic (donor) transplant will follow. Essentially, the first transplant buys me time; the second is for a hopeful cure. Yes, you read that correctly: “to buy me time.”
So, Dr. Jagasia set up a “fast track” schedule for me: Yesterday, June 28, I returned to Vanderbilt for more blood labs and tests. An eye specialist found abrasions on my right cornea (from inflamed eyelash pores), as well as broken blood vessels and inflammation inside both eyes. She measured the mass behind my right eye, the one found last December when I was originally diagnosed. In December, it measured 3.0 centimeters; during treatment it shrank to 2.0; yesterday it measured 2.6. Her report to Dr. Jagasia was, “her vision could be in imminent danger at anytime.” Another MRI confirmed the tumor has definitely grown, pushing my orbital lobe forward, giving me, once again, a not-so-attractive Chihuahua-eye. And it hurts.
On July 1st, I am scheduled to return to Vanderbilt for pre-admission blood tests and whatever else they deem necessary (perhaps another bone marrow aspiration), to compare to previous test results. Even if the cancer counts are up, which Dr. Jagasia anticipates, he intends to proceed. On July 2nd, the three-prong catheter will be surgically inserted and on July 3rd, I’ll receive a dose of a potent chemo (Cytoxin). Hopefully, the chemo will shrink the tumor behind my eye. If it doesn’t and my vision continues to deteriorate, then surgical intervention will be required.
After July 4th, the schedule becomes approximate: a week of injections to release stem cells into the blood stream, then the harvest of cells (which may take one day or four); Melphalan (strongest of all chemos) on July 19 and 20, reinsertion of my treated cells on July 22nd or 23rd. Then we wait during the next 14 days for the graft to take. On each of those 14 days, I must return to the hospital for several hours (6-8) of observation. They will literally “eye ball” me, watching for temperature flares, signs of infection, notating the amount of food I eat, measuring what I throw up or poop out. (Ewwww, gross!) I must retain at least 50% of my caloric intake. I see the finger of warning shaking under my nose, “Young lady, if the diarrhea or vomiting become uncontrollable, and you lose more than half of what you consume, you’ll instantly be admitted to the hospital.” I feel more than fairly warned, so, for the first time in my adult life, I’m asking you to pray that I will retain calories. My hope is that I will successfully recover my strength in the 30+ days allotted for that purpose.
In order to do all of the above, I am required to join a clinical group for patients with refractory disease, that is, patients in the “worst and most horrible” stage of myeloma. As a person who loves words, I had to look up “refractory” which means ‘resisting control or authority.’ That defines my nature and the nature of my cancer cells. I confess to the complete frustration of being a “special needs” patient. I don’t know if anyone with cancer feels “normal” but I long for normal symptoms and normal responses, whatever that means. I long to be freed from all the bad side effects, reactions, relapses, and frightening surprises along the way.
When I heard Dr. Jagasia say that the first transplant was to “buy me time,” I held my breath and tried to control my emotions. Yes, I cried. Later, Jim and I cried together. When we told Elliott and Taylor the stark reality of my condition and future, they did their best not to cry.
Yes, I am afraid. Dr. Jagasia said not to give up hope. I haven’t. He said to put on the boxing gloves for round one. I told him I’m already exhausted from the journey to ringside, but I will put on the gloves. He said not to make any really, really long-range plans. I told him I planned to live long enough to see my grandchildren, and, by the way, our sons are only 18 and 20. We both laughed, but you get the idea of how hard it is for me not to make long range plans. How can I not?
Yes, I am ready. Mainly, because I know I am not alone. Last week, on two separate occasions, women reminded me of the account of Jesus and Peter walking on the water (Matthew 14:22-36). The disciples were in a boat, in the middle of a lake, in the middle of a storm. They were understandably terrified, especially after seeing a ghost walking on the water. When the apparition was identified as Jesus, Peter said (my paraphrase), “Oooh, oooh! Me, too, me, too! I want to walk on the water!” Jesus simply replied, “Come.” Peter jumped out of the boat, walked on the water, then noticed the rain and wind entangled in a tumultuous dance, felt the waves undulating under his feet, panicked, and began to sink. Jesus, close enough to catch him from going under, said, probably with a great sigh, “You of little faith, why did you doubt?” Then, Jesus and Peter climbed into the boat. I imagine Peter collapsed in a heap as Jesus calmed the storm.
I have claimed for myself several things from that story: I am in a storm and I am terrified. I feel the stinging barbs of fear on my face and the waves slamming against the bottom of my feet; I know Jesus is close and will keep me from going under; that he has carried me to a medical life boat. But, most importantly, Jesus is in the boat with me.
I do not know if I will land on an earthly or heavenly shore. But I am comforted, knowing that Jesus is holding me up, bobbing across the rollicking cancerous waves with me, calming the storm, staying by my side until we land on the sands of eternity.
I know, too, how much it has meant to me that you have stayed in the storm. I wonder, when Peter fell exhausted back into the boat, if his friends were as kind as you have been to me. I cannot thank you enough – not only for being in the boat, but mostly for taking the oars and rowing me to shore.
Janice
P.S. I don’t know how often I’ll be able to write updates over the next month. Jim says he will try to keep everyone updated. In the meantime, thank you, thank you ALL, most sincerely and humbly, for your prayers and love.
And for the biggest, “Oh, by the way” that I have to date written: Some of you have offered to donate bone marrow/stem cells. I’m not sure what constitutes a “match” but thank you for offering. If you are truly willing, call the NMDP, National Marrow Donor Program, at 1-800-627-7692, to leave your name and address. A brochure will be sent to you with a list of participating facilities in your area. Let me warn you: bone marrow aspirations and donations can HURT - but just for a little while. Even if you and I don’t match, please consider doing for others what I’m hoping will be done for me. Jesus’ powerful statement to “do unto others” often requires the price of sacrificial pain…with a potential payoff of life. May we all be willing. "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.” |
