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 Friday, January 23, 2004 My mentor Barbara Pine wrote the following:
I have been thinking about purpose quite a bit lately; the purpose of being “chosen” for cancer; the purpose of strength and bravery; the purpose of intentional living; my purpose in this surreal ordeal. I continue to be humbled by your avalanche of cards and e-mails. I’m astounded by the adjectives you’ve chosen for me: feisty, sassy, unwilling to shrink, poetic, provocative, noble (that one made me kind of snort). The first word I would chose to describe myself is honest; at least, that is my purpose - to be honest with myself and you through this unexpected process. Thursday, January 15: I went to what I thought would be two routine doctor’s appointments. Dr. Bethurum checked my chemo port-a-cath, removed a tiny stitch, said I was healing nicely, and sent me downstairs to Dr. Murphy, my oncologist. He reported good news on some of my protein levels. Then he noticed my nasty cough and rattling sound in my lungs. “Does that hurt?” he asked. Now that’s an interesting question. I already hate the “On a scale from 1 to 10” question. I told him it ached below my right collarbone, but only when I stood, sat, took a step, inhaled, exhaled or coughed. I assumed that since my left, chemo port side hurt, I was compensating on the right and had maybe pulled a muscle. I refused to get all psycho and hypochondriacal and freak out at every little real or imagined pain. Umm, that was stupid. Bravery isn’t noble and unnecessary suffering is pointless. Dr. Murphy made me get an x-ray. I have a fractured rib. No more macho, tough-woman, I-can-handle-this, attitude. I was on my way out the door when Dr. Murphy received more lab results and called me back into the room. He read out some numbers and I nodded as if I understood; I was able to interpret that the first round of chemo was working but I was anemic. (I really must learn about counts and risings and fallings and technical stuff.) “I’ll give you a shot to boost your red blood cells,” he said. Fine with me. Susan, the nurse, came in with a yellow box and removed a funky-looking, squarish syringe. “Have you heard about Procrit on television?” she asked. “It’s one of those commercials that doesn’t say what the medicine is really for,” she explained. “As if people can just come in and get one, since it’s about a $1,000 a shot.” “Stop,” I said. She looked at me. I looked at the yellow syringe on the counter. “Does
insurance cover that?” “Yes.” “Then
bring it on.” My red cells better start dancing a conga line. Friday, January 16: I returned to the site of the beginning of this ordeal; it felt very strange to walk across the parking lot into the optical office to pick up my new glasses. Dr. Murphy warned me that my old glasses might work better and that I might have to put the new ones in a drawer until this affliction is over. (Also, when did glasses become so stinking expensive?) As soon as the new frames and lenses were on my face, I breathed a sigh of relief. I could see. Everything near and far and in between was in focus. Just nineteen days earlier, I had complained that I couldn’t see out of my right eye; little did I know at that initial visit just what it was I couldn’t see. Saturday, January 17: In an on-going attempt to live our lives as normally as possible, Jim and I went to see the new Jack Nicholson-Diane Keaton movie. Watching a film through a cancerous filter alters everything from the script to the morals and motivations of the characters. While I had a hard time finding this movie funny, I realized how fortunate I am to have a faithful, loving husband; to know that he will not leave me for a young fling; that his commitment to me, even with cancer, does not, will not, waver. I have what Diane Keaton’s character was so desperate for: a man to love her in her sickness and in health, on special occasions and ordinary days; a husband to cheer her achievements and comfort her sorrows. I have a soul mate. I am blessed. We didn’t see the end of the film because we had to get back to the house before Roland and Sarah Lundy arrived with dinner. Of course (if you know Roland), they were exactly on time, probably one minute early, and we were one minute late. The dear couple thought they’d just open the door and leave the food inside the house. We arrived to an ear-busting alarm, the dog sprinting in crazed circles, Sarah wandering around the yard with a pot of soup in her hands, and Roland gesturing to us, “Where have you been?” It was a happy reunion in spite of the decibel level. Jim and I are grateful for food. It is such a simple, yet satisfying offering of love. Every meal has been superbly and lovingly prepared. After the initial mouth sores, my appetite has not diminished and I’ve eaten more than my share. I love leftovers – and have enjoyed some deliciously wonderful dishes several times over. January 19: Today I felt light-headed and dizzy (leave it alone, folks). I napped on the couch and told Jim at dinner that I was aware of my port. It didn’t really hurt but I was aware of it in my chest. Around nine, we went upstairs, I pushed up the sleeve of my sweater to reach for my toothbrush, and about fainted. My left arm was twice the normal size and as purple as an eggplant. “Uh, Jim, I don’t think this is normal.” We called the doctor and waited (and waited and waited) for his return call. While we waited, I flossed my teeth. Jim looked at me with an expression of, oh, let’s call it incredulousness. “You’re flossing?” Well, why not? The phone rang; I explained the size and color of my arm to Dr. Murphy who gently told me to go to the hospital as I probably had a blood clot. The words “blood clot” bring all sorts of images to mind: a 100-pound boulder crashing off the edge of a mountain, pulling down an avalanche of debris; a tiny dot lodged in a tiny vein causing a volcanic brain explosion; or, an inflated left arm nearly bursting from unbearable pressure, the hue of a blue herring, if a herring really is blue. We arrived at the emergency room, supposedly to be escorted straight to a room where I would immediately receive a shot of blood thinner. Wishful thinking. This is not the time nor place to demean or disdain professional members of the health care system. On every other occasion, the staff has been excellent. Suffice it to say that several times within a two-hour period, I had to restrain Jim from punching one or two (ok, maybe three) caregivers. My cancer has brought out many wonderful traits in my husband; patience is not one of them. He expects the best for me - and I love him for it. Perhaps I’m being a bit selfish, but I was a bit worried about the blood clots and felt that my condition was somewhat URGENT and that I deserved some immediate attention. However, it was relayed to us that there wasn’t a room available; perhaps a supervisor might be asked, after his break, to find a space for me. Jim rather strongly urged that the supervisor be found now along with a room. I was wheeled upstairs through a demolition derby: the hospital is being remodeled and the hallway was filled with bags of trash, piles of laundry, abandoned machinery, stacks of stuff. The wheelchair barely cleared the obstacle course. The room assigned to me was still dirty and the woman cleaning it didn’t seem as motivated to move as quickly as I would have preferred. I laughed as I sat in the chair, my arm blue and falling off, and waited for someone to vacuum the floor and change the bed. I would have crawled into a dirty cot straight from a battlefield if it had meant a blood-thinning shot was on the way. But no, first we had to answer 70 minutes worth of questions. No lie; for over one hour, we were asked some fascinating questions: “What indication caused you to suspect a blood clot?” (“What, my blue inflate-a-limb isn’t obvious enough for you?”) “Do you have scars on your legs?” (That struck me as funny.) The dear woman who was required to ask these questions had hearing aids; to listen to my chest through the stethoscope, she popped them out, and obviously couldn’t hear them feeding back from her pocket. The question that threw Jim over the edge was, “Other than your wife’s blood clots, cancer, and intolerable pain, how is her overall general health?” Again, there are female personages living in this world who should never be entrusted with needles, especially when sticking them into other people’s arms/hands/limbs /extremities. Finally, after too many failed attempts at inserting an IV into my arm, Jim demanded a nurse from oncology. Saint Liz arrived, an angel from heaven. I could have kissed her; just by looking at her, I knew I was in safe hands. She had spoken with Dr. Murphy, who is fast becoming my new best friend, and was prepared to tend to me. Her first act: to try and access both sides of my port and to inject the blood thinner. She tapped on the site. Ouch. She tapped harder and apologized. I began Lamaze breathing. Then she shoved something akin to an ice pick through one port. I believe I shouted. Then she shoved another ice pick into the second port. Again, I believe I shouted. She had, in the name of patient care, accessed both ports. Then she took a syringe and tried to squeeze in the precious, life-saving, limb-reducing blood thinner. Her sweet hands shook; she was pressing on the syringe so hard I swear I saw the sides move. My guess is that she had 150 pounds of tensile strength on that puppy and not one drip came out. Dr. Murphy arrived and sat on the edge of the bed as a spectator to this scene. I learned something. Nurses cause pain. Doctors pat your hand for comfort. St. Liz hurt me; Dr. M watched. (I’m only partially kidding. The stricken look on his face matched my own.) It didn’t take long for all of us to realize that the ports were clogged and that the whole apparatus would have to be removed. Tuesday, we waited for the thinner to work. Got some nice double doses of morphine and sleeping pills. Wednesday morning, an ultra sound revealed a slimy, stringy strand of red pearl blood clots, shimmering like primordial islands in my left upper arm. Around 1:00 in the afternoon, Dr. Peppers removed the nasty port. Honest, that is her name. Thursday, I was discharged and so glad to go home. The first thing I did was floss. The frustrating thing about this episode: it really had nothing to do with the myeloma. It was the apparatus used to treat the cancer that went haywire, an occurrence that affects 1 out of 100 port patients. Well, aren’t I the special one. I do feel special in the care of Christian doctors and nurses. The ones with faith are so obvious; I sense when they are praying over me. As we put our trust in the predetermined procedures and prescribed meds, it is a comfort to know that they, as well as I, also trust in the Great Physician. Jim and I are very fortunate not only to have a supportive family, but friends who love us as brothers and sisters. Gifts and flowers have arrived at just the right time. Like today. Today, my hair started to fall out. I knew it would happen, I had been warned it would happen, I was expecting it to happen – but not today. I cried. I’m still crying. Then, this afternoon, the loveliest bouquet arrived with such a sweet sentiment from business associates. And that seems to be part of the purpose of this prolonged nightmare. I confess the truth of my today and receive the gift of affection from those who love me. I allow myself as “one of the least of these” to receive the outpouring of kindness from brothers and sisters of faith served in God’s name. Thank you for your love and prayers. Janice P.S. Monday will be a hard day. A PICC line will be installed into my right arm for the chemo. Just thinking about it makes my knees buckle. It's a permanent IV surgically inserted up my arm into the main artery above my heart. A three-to-four inch tube will dangle from my elbow, with two extensions, and that's where the chemo line will attach. I'll come home with the fanny pack of poison on a pump for a four-day round of treatment. Please pray for me. For once, I am fearful and queasy and not looking forward to the PICC line insertion. Jim flies out of town on Monday and returns Wednesday. Son Taylor will be my main care giver. God grant us all grace.
"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.” |
