● Home ● Janice's Story ● Updates ● Speaking ● Books ● Albums ● Responses ●
 |
 April 7, 2004
For my days pass away like smoke, And my bones burn like a furnace. My heart is stricken and withered like grass; I am too wasted to eat my bread. Because of my loud groaning My bones cling to my skin.
I lie awake; I am like a lonely bird on the housetop. Psalm 102: 3-5; 7
At night, when I cannot sleep, I feel like a lonely bird, even as Jim snores not so softly beside me. In the darkness, I know this cancer battle is my own, yet I find comfort and rest in the prayers and friendship of all of you. During the day, I am back on the roller coaster, locked behind the lap bar, about to hurl down a course I fear: afraid, apprehensive, yet ready. It's time. All that has happened to me during the past three months amounts to the Tea Cup ride compared to what lies ahead. Honestly, I am scared as I face the worst part of my myeloma journey - the stem cell transplant.
On March 29, I returned to Dr. Greer's office for a lung test, full set of body x-rays, and three unsuccessful attempts to withdraw blood. Then Nurse Laura was summoned. She quickly, efficiently, almost painlessly put in the IV and on the first try withdrew four vials. Her name is now in my file and she will be the only one in the future allowed to withdraw my precious blood.
After Dr. Greer reviewed the test results, he, Jim and I agreed to fast track the stem cell replacement. My cancer counts are as low as they can go, the meds continue to wreak havoc on my body, and there's no good reason to wait to begin the procedure. Fear carries no clout.
I returned to Dr. Greer's office on April 1st clutching a brown paper bag containing a brown plastic container filled with a day's worth of urine. April 5, I had a TB test (negative); today, a mammogram. Absolutely no dignity is left intact on this wild ride. There are no private body functions left unmentioned or unexamined, no questions about bowel movements left unasked; I have entered the medical world of AARP and conversations that revolve around body tasks. Gross.
After an EKG and a chest x-ray, Nurse Laura withdrew blood. She immediately hit an Old Faithful vein and quickly filled 11 vials. (Yes, eleven.) Then Jim and I met with a social worker, financial/insurance advisor, and nurse practitioner. We watched a visually boring, but very informational video about the stem cell replacement, dietary requirements, and medicines. A two-hour meeting followed, resulting in this projected calendar:
April 11: Easter, my favorite day of the year after Christmas April 14: Pre-admission to Vanderbilt Clinic (all of the procedures will be done as an out-patient; I'll travel to and from the hospital on a daily basis or according to treatment) April 15: insert catheter (three prongs will dangle out of my right chest) April 16: dose of cytoxan (chemo), guaranteed to make my stubbly hair fall out April 17-25: two shots of Neupogen daily (given by Jim), just under the skin in my stomach or thigh, to boost stem cell growth and fling them into my blood stream; mega doses of antibiotics
April 26-28: harvest stem cells through catheter; they will be treated, divided in half, and frozen; held in storage until insertion on May 28
First three weeks of May: break (may resume Thalidomide and/or steroids - and their frustrating side effects) May 23: Taylor's high school graduation (Party!) May 24: Preadmission to Vanderbilt (still an outpatient) May 25-26: high doses of melphalan (chemo) to destroy all red, white, and plasma cells in marrow (on a scale of 1-10, melphalan is a 10; guaranteed to lose all body hair. Ick. Mentally prepare for major battles on physical and emotional levels) May 27: day of rest May 28: insert treated stem cells; still a bit frozen, a blood slushy May 29-June 8: ten crucial days; no immune system to fight infection; no risks can be taken; housebound and isolated
June month of recovery June 28: evaluation on day 30 after insertion of stem cells
That is the plan, and like most plans, subject to change during the process. Some fun facts: when the stem cells are collected, calcium levels drop in the blood, causing lips and hands to tingle. Amazingly, TUMS are given to chew, mouthful at a time. The insertion of the treated cells, a monumental event, is actually quite boring (at least, that’s what they say): the blood goes in for a few hours, cold enough to turn lips blue, and we wait for them to accomplish their mission.
Jim's mother, Sharon, plans to be here from May 22 through June. She already deserves a nomination for sainthood for volunteering as my care-giver. It will be a tough job as I will be a very sick girl for several weeks after the transplant: nausea, vomiting, diarrhea, fatigue, mouth sores, loss of appetite, irritability - just to name a few side effects.
Of course, being not exempt from "life goes on," April 25-29 is GMA week (Gospel Music Association for those living outside Nashville) - and dear Jim is Chairman of the Board. It's not like he can miss any of the big events, like hosting the Sunday night Worship Service with Smitty and doing whatever he does at the Dove Awards on Wednesday night, plus attending all the GMA meetings and hosting panels and managing artists. We looked at the stem cell calendar a hundred different ways and this schedule is absolutely the best for both of us. I will HATE not be able to schmooze in the hotel/convention center lobbies and hug old friends and catch up on personal and industry news. I am one of the few who LOVES the reunion of GMA - no matter how we debate "business vs. ministry" - we are a body of Christ - a body I have grown in since my mid 20's - and it is family to me. I love how we've aged and matured and segued from immaturity toward wisdom. I love meeting the new, fresh-faced, idealistic artists and I pray we don't damage their dreams. I love the Sunday night worship service and will sorely miss letting the joy and truth and emotion of the music wash over me. I love that all the talking is through music - from the singers' lips to God's ear. I will miss it.
And I will miss playing in the dirt this spring and summer. I was so disappointed when the doctor told me, "No planting, no potting, no working in the garden. No touching mulch, soil, plants." My one self-indulgence every May is to fill my collection of terra cotta pots with annuals and tend to them all summer, moving them from shade to sun on the south deck, watering with Miracle Grow, trimming, babying, enjoying the butterflies and bees that hover, the occasional humming bird, and marveling at the beauty of each petal and color. Not this year; something to look forward to in 2005.
In the continuing saga of my expectation of normalcy and exemption from calamity: Jim left last Friday night with one of his artists for a quick, 12-hour, bus ride to Florida. Saturday afternoon, Pouncer, our 20-pound cat with claws, stood in front of "The Chair" - my beautiful, brown leather, nap-taking recliner. I grabbed the spray canister of pheromone (stuff that is supposed to keep cats away from furniture) and spritzed a couple of shots. A fine spray floated up. One inhalation later, I was in trouble. My vision blurred and my consciousness ebbed. (Hence the last line of instruction in fine print: "Avoid breathing vapor or mist.")
I tottered to the kitchen in time to slide down the front of the oven door and hit the floor before fainting. I revived, got up, and stumbled to the bathroom where I once again fainted and hit the floor full force. (Now that I live in the South, I can refer to this as my Scarlett O'Hara spell.) When I “came to” the phone was ringing and I comically hoisted my body across the hall into my office. Of course it was Jim calling and I opted to tell him the truth. Um, to put it mildly, he freaked out. I assured him I was fine but for a bruised right fanny and a scrape under my left eye. Go figure. He hung up only because I insisted I had to call the doctor. An oncologist other than Dr. Murphy was on-call and he was mainly concerned if I hit my head. I hadn't (though it would be a good explanation for my ditziness). Within a few minutes, okay, maybe a half hour, I felt fine; shaken, embarrassed, and humbled, but fine. I spent the rest of the day in bed, aware that my body, my life, isn't normal. I react to things differently - not just kitty pheromones, but conversations, medical prognoses, relationships, and my attitude about God.
Psalm 103: 1-5
Bless the Lord, O my soul, And all that is within me, Bless his holy name. Bless the Lord, O my soul, And do not forget all his benefits - Who forgives all your iniquity, Who heals all your diseases, Who redeems your life from the Pit, Who crowns you with steadfast love and mercy, And who satisfies you with good as long as you live, So that your youth is renewed like the eagle's.
Romans 8:35; 37-39
Who will separate us from the love of Christ? Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword? No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height nor depth, nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord.
This is my hope. Even in my escalating fear, I believe that God heals all our diseases; that he redeems our lives and satisfies us with good - even when suffering from cancer. I also believe that nothing can separate me from God's love: not the prospect of death during the stem cell procedure; not the power of the doctor's or nurses or medicines; not the depth of physical pain; not the present apprehension about the future; NOTHING can separate me from the love of God. If I meet God sooner rather than later, it will be an unexpected joy. If I live for many more years, I will be blessed to enjoy the company of my husband, my sons, and my friends - all of you. And I will strive to continue in my journey to know God and to be satisfied to rest in his presence.
Thank you for your previous prayers. Now I ask that you specifically pray for my courage, for strength, for unfailing hope, for a miraculous recovery. Pray for Jim - he carries his burden as well as mine; pray that he will have strength to take care of me and tend to his management business. Pray for Elliott and Taylor - for courage greater than fear; that they will turn to God for peace and hope. Pray for Jim's mother who will be away from her husband, Gordon, for a few weeks, and living in her sick daughter-in-law's house.
Mostly, pray for medical miracles. This catheter MUST work; it can't get infected or clogged like the first one. No blood clots! Pray that the Cytoxan and Melphalan (chemos) work well, and that I might escape terrible side effects or that I'll be able to bear them. Pray that the Neupogen effectively multiples the blood cells and that in just one day the doctors will be able to harvest more than enough needed. Pray that the treated cells will do their job when they are reinserted; that my red and white and plasma cells multiply, producing healthy, cancer-free cells. Pray that during the 10-14 days after the insertion (May 29-June 8) I WILL NOT get a fever or infection or have uncontrollable vomiting and diarrhea. If any of these things beset me, I must be hospitalized and it's an ordeal to get out. I would have to pass some tests - like being able to orally eat 50% of my daily calories; be able to walk on my own for quite a distance; vomiting and diarrhea has to be under control. I'd rather miss the whole blooming hospital scenario and stay at home.
I know you've prayed before, now thank you for praying again. These next two months will be my hardest battle against multiple myeloma. This is where my hope for long life begins. This is my valley of the shadow of death, but on the top of the mountain, on the June 28th evaluation, my hope, my prayer, is that the sun will be shining, the birds will be singing, the flowers will radiate in full bloom, and so will I. I will stand as a new creature, refined, renewed, and ready for the rest of my life. Thank you for taking this journey with me. It's a privilege to have you 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.” |
