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 June 20, 2004
I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, ‘The Lord is my portion; therefore I will wait for him.” The Lord is good to those whose hope is in him, to the one who seeks him; It is good to wait quietly for the salvation of the Lord. Lamentations 3: 19-26
Monday, June 14:
I rode to the hospital in a fiery chariot – Bonnie Keen King’s Mazda Miata. (The woman is a slow driver. I would have been there in 12 minutes instead of 20. She kept mumbling something about previous tickets…) We arrived in time to wait…and wait…and wait.
Finally, I was led to a room on the oncology floor to prepare for the bone marrow aspiration and spinal tap. When a nurse entered to take blood, I told her the PICC line wasn’t working properly; liquids could be injected, blood couldn’t be withdrawn. But, I suggested, she could give it a try, just in case. Bonnie blurted out, “I’m going to pray,” and began audibly to petition God. The nurse attached a syringe to the blue-colored port and pulled back the stopper - no blood return. She tried the red-colored port – lo and behold! LET THERE BE A SYRINGE FULL OF BLOOD! It worked!
I’ve determined that Bonnie will now go with me to every appointment. God seems to listen to her.
After the requisite number of vials had been filled, Nurse Stephanie came in with a syringe of Demerol. “This will relax you,” she said. “Later, another injection will put you under.” Yummmm. The Demerol felt like liquid chocolate – warm, delicious, and comforting. I was so content I nearly passed out. “No, no!” Stephanie practically shouted, “don’t go to sleep!” After a minute or two, I revived a bit and Bonnie and Stephanie kept me awake by asking questions about Jim and the boys. I slurred my answers with a thick tongue and a happy disposition.
When the bone marrow doctor arrived and introduced himself, Bonnie gave me a kiss, a hug goodbye, and left for a recording session. She should have stayed. And prayed.
Dr. Extractor (not his real name) instructed me to lie on my side and pull my knees toward my chest. He swabbed my left hip area with icy cold, orange beta dine and said, “You’ll feel a little bee sting as I inject the numbing agent.”
“Wait,” I said to Nurse Stephanie, now seated in a chair, holding my hands through the bars of the bed railing. “I thought I was supposed to be anesthetized for this.” She nodded in agreement and opened her mouth to say something.
Too late. In went the needle. Ouch. The needle went deeper. Ouch. The needle hit bone.
“OOWWW!” I yelped.
“Oops. Slipped, sorry,” said Dr. Extractor.
Slipped?! I was fully awake and less charmed by the Demerol, no longer “happy” enough to reply, “Oh, that’s okay.” It hurt like… like…. Hey, Janice, I reminded myself, remember the verses from James. “Do not swear… From the same mouth come blessing and cursing... this ought not to be so.”
I started Lamaze breathing. Dr. Extractor said, “I’m going to extract the marrow now. It will hurt only as long as I’m withdrawing.”
Yeah, no kidding. I learned that from my first bone marrow aspiration on December 31, 2003. “OK,” I answered, then inhaled a deep breath, buried my face in the pillow, and began to count to an estimated twenty seconds of pain. When I got to ten, Dr. Extractor said, “Finished!” The torture instantly stopped.
He removed the needle from my hip, cleaned off the beta dine, and applied a bandage over the injection site. I asked to see my bone marrow, curious to know what it looked like. The nurse assisting Dr. Extractor came to my side of the bed and held up a clear vial filled with red liquid. “Oh, it’s like blood,” I said, somewhat disappointed. I don’t know what I expected all that pain to produce; maybe white chalky sediment swirling in kaleidoscope patterns, something obviously visible, something to make me say, “Oh, so THAT’S cancerous marrow.”
One procedure down, one to go. A few hours after the extraction, I was rolled onto a gurney and delivered to a small, dark room, where I was positioned face down on a sheet-covered, narrow bed situated under a canopy of beige robotic machines attached to the ceiling. A nurse placed a folded up towel under my stomach and said the doctor would be right in. I hope I will be sedated for this spinal tap, I thought.
Dr. Tapper entered, introduced himself (sorry, but I can’t remember his real name), rolled a stainless cart to the bedside and rearranged the plethora of objects on the top shelf. He picked up several cotton swabs and spread cold antiseptic from the middle of my back to my tailbone. Then he said, “First, I’ll numb the skin and muscle.”
Where’s the anesthesia? Before I could even ask to be knocked out, the needle was in. But this doctor worked a bit slower, and after the initial sting, I didn’t feel much pain. Well, not compared to the aspiration. “I’m entering at Lumbar 3,” Dr. Tapper said. He guided the needle into my spinal column by looking at a television screen, located just above and to the left of my head. I only needed to tilt up my chin a bit in order to see – but I couldn’t quite bring myself to watch.
A minute or so into the procedure, Dr. Tapper pivoted to the stainless cart and from a long tube partially filled three slender vials. “Is that spinal fluid?” I asked.
“Yes,” he replied.
“It’s clear,” I said, acknowledging a second surprise drawn from my body that day.
“Yes, it is,” he confirmed.
I felt stupid. But how was I supposed to know? Every day, I learn something new, from experience, doctors, medical websites, e-mails, books, the Bible, family, friends. I just wish all the information wasn’t myeloma related.
Tuesday, June 15:
Back to the oncologist’s office for the very last dose of Velcade. Dr. Murphy didn’t even wait until I was seated in an examining room; he met me in the front hall and said, “I have the results from yesterday’s tests.”
I froze. What was so good/bad that it couldn’t wait?
“There are no cancer cells in your spinal column and there are no detectable cancer cells in your marrow.”
I couldn’t decide whether to laugh or cry or hug the doctor. “Wow,” I said. “I don’t know how to respond to good news.” After six months of disappointing setbacks and reactions, side effects and revised schedules, I finally heard positive results. The drugs had done their job! If my back hadn’t hurt from the two puncture wounds, I might have danced or jumped up and down.
Instead, I sat in a recliner for the two-and-a-half hour infusion of saline and Velcade. Just before I checked out, Dr. Murphy told me that he had called Dr. Greer with the good reports, and the two of them agreed that the next step was the stem cell transplant. What a great day!
Thursday, June 17:
Arrived at the crack of dawn (ok, it was 7:50 a.m.) at Vanderbilt Hospital for a series of tests and a meeting with Dr. Greer. The first test measured my lung/breathing capacity. It’s impossible to breathe deeply so early in the morning without yawning. I sat in a small glass-walled booth that housed a panel of various-sized clear tubes, wires, and a funky-looking breathing apparatus. The technician instructed me to bite down on the blue mouthpiece, clamp my nose with a white plastic variation of a clothes pin, inhale for several seconds, then blow out as much air as possible. I did fairly well the first time, even though my face turned red and the veins in my neck popped out, but not as well on each successive try. By the third time, I felt faint and hissed out air like a stuttering balloon.
The test confirmed that my lungs were weakened by the previous bout with pneumonia and that I need to exercise and strengthen them. Thankfully, I met the required percentage to pass.
The heart function test took place in the radiology department. A sweet, young technician futilely tried to withdraw blood from the PICC line (Bonnie should have been there!) before escorting me to an anesthesiologist who quickly and easily put a small IV line in my left arm. Ouch. She withdrew one vial of blood, but left the line in, just in case Dr. Greer required blood labs.
The extracted blood was treated with radiation and re-injected into my body through the IV line before I was encapsulated in a CAT scan-type machine. My heart was filmed for five minutes, the color-coded red and blue directional flow of blood visible on the computer screen. I passed the test.
Final stop: Dr. Greer’s office. Marsha, Queen of Blood Labs, and I were both grateful that I had a working IV line as her orders were to withdraw 14 vials of blood. (Yes, 14.) First, she cleaned the line with an injection of saline, then pulled back the stopper on the syringe which quickly filled with blood. So, technically, she filled one large syringe and 14 small vials. I felt a bit drained. (Yes, I know, bad pun.)
Dr. Greer was pleased with the good reports from the bone marrow aspiration and spinal tap, and the lung and heart tests. He confirmed that he and Dr. Murphy agreed that the stem cell transplant was the next step in my battle against multiple myeloma. Then he hesitated. Hesitations are what I’m beginning to fear more than any sort of news.
“I will put you on the June 23rd schedule,” he said, “even though I think it’s too soon.” He explained that the last dose of Velcade needed a minimum of 10 days to 3-4 weeks to do its work and get out of my system, and that we should wait to see how well my own my bone marrow fights the cancer.
My eyes widened at the prospect of waiting again. “Yes, I know,” he said. We both remembered that during the last rest period, the myeloma roared and re-entered my blood stream. Dr. Greer continued, “If the cancer is still so aggressive, then the stem cell transplant most likely won't be successful. So we really should wait until June 30th to retest your blood and take another series of full-body x-rays. If you relapse, we’ll put you on a different regimen of chemo/drugs until the cancer counts drop, and then do a stem cell transplant using a donor.” I took special note when he mentioned the 5% mortality rate in transplants.
I didn't cry; I prefer the truth to being blind-sided later. Dr. Greer said he would discuss my case with the team of doctors in his office on Monday, June 21st. Together, they will decide what is best for me. I’ll know Tuesday if the stem cell is scheduled for the 23rd or the 30th.
There was good news that day: Before I left Dr. Greer’s office, the PICC line was removed from my right arm. Such a strange sensation as the thin, plastic line was slowly pulled out. Now I can easily use both arms; I can bathe or shower without first wrapping the PICC line arm in Saran Wrap!
For the rest of Thursday afternoon, I played the mental “If” game. If the autologous transplant, using my own bone marrow, is unlikely to be successful, why put my body, my family, and my mother-in-law (who still plans to come and tend to me) through the ordeal? What if I wait until June 30th and the cancer relapses and rages like a forest fire? What if the cancer doesn’t respond to the next regimen of drugs? If there are side effects to the new drugs, is something else available?
The “If” game ended with the recall of Jesus’ words recorded in Matthew 6: “Do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food and the body more important than clothes? … Who of you by worrying can add a single hour to his life?” I have to admit, I try.
Friday, June 18:
Fear of the unknown is worse than knowing the truth. There still isn’t an explanation for the numbness on the right side of my face. (Feels like Novocain deadened my nose, upper lip, gums, and cheek.) I met with a neurologist this afternoon whose initial opinion was that the nerve to that area had a stroke during my previous bout with Vasculitis. I asked, “If so, is the numbness permanent?” Dr. Campbell hesitated, then said that nerve regeneration was possible, over a long period of time. She scheduled an MRI for later that evening, at 8:15 p.m. Again, I was cocooned in a machine for almost half-an-hour. Results from the scan will be sent to Dr. Campbell on Monday morning. Dr. Greer will also receive the MRI report before his Monday team meeting.
Sunday, June 20:
This is the continuation of my lamentable affliction. This is my reality…waiting and living one day at a time…one foot in front of the other, one step at a time. (Speaking of one step… I failed a test at the neurologist’s office, which was kind of funny; well, not really. Dr. Campbell checked my balance by asking me to walk a straight line, placing one foot in front of the other. Ha! I lost my balance on the first step. Thank goodness I could blame the steroids!)
So I wait for Monday’s delivery of good/bad news. I am not very patient during these periods of forced waiting. I was whining to myself when I remembered Deborah’s story in my One Silent Night book. Deborah was sentenced to a long term in prison for a crime she did not commit. She said that her confined life was all about waiting. She waited for her children to visit; waited for meals, for doors to open for work; waited for mail delivery, for volunteers to arrive. She waited for the Lord to teach her how to wait on the compassion of God, who hears and answers prayer. One night, as she read the tenth chapter of the book of Hebrews, her mouth fell open at the words, “But when Christ had offered for all time a single sacrifice for sins, he sat down at the right hand of God, and since then has been waiting…” She said, “I literally went weak in the knees and fell to the floor. ‘Oh, God,’ she prayed, ‘thank you for letting me see that you wait.’”
God waits for us – to love him, to love each other, to surrender, to mature, to reflect his image, to enter eternity and meet him face to face.
It’s a small thing for me to wait a few days for test results. It’s a big thing to wait, to be still, to rest in the presence of God. Thank you for waiting with me.
Janice
P.S. My dear friend, Barb H.D., whom I’ve been privileged to love since our high school days, circa 1968, sent me a birthday card to celebrate my June 18th birthday. My physical birth day was July 27, 1952 and in a few weeks I’ll turn 52. (Yowzers! How did I get so old so fast?) My spiritual birth day was June 18, 1971. I had forgotten the day of my salvation until Barb’s card arrived today on my 33rd birthday. It happens to be Barb’s physical birth day, as well. (I won’t reveal how old she is!) What wonderful, amazing, surprising lives we’ve lived! The best gifts in life (received on any day) are life-long friendships and God’s eternal love. “This is the day the Lord has made; let us rejoice and be glad in it.”
"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.” |
