Wednesday, January 21, 2009

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In February of 1999 I was diagnosed with Multiple Myeloma, cancer of the bone marrow. Black, 75-year-old men usually contract this disease. I did not fit any of those parameters! The doctor had to inform me of the results of the bone marrow biopsy over the phone and I was unable to see him until the following week. As a result the weekend was difficult. I thought of all the things I wanted to do before I died. I questioned why I hadn’t been allowed to finish raising my thirteen-year-old son, Brent. I decided to visit my daughter, Michelle in Annapolis, Maryland. Frank and I and Brent flew to Annapolis and stayed with Michelle for a week. We toured Washington DC and saw the sights we had always heard about. It was a thrill to actually see the sights we had only read about. We traveled to Philadelphia and toured the National Mint. A carriage ride around the city was a highlight. We saw the Liberty Bell and the hall where the Declaration of Independence was signed. We thrilled at riding the rapid transit from Annapolis to DC. With Michelle we attended the Washington DC temple. It was so beautiful.
A month later I started Chemotherapy. A central line was inserted surgically directly into my aortic valve. A fanny pack was strapped around my waist and through the central line chemo was administered while I was at work. Treatments were three weeks apart to allow my blood counts to rise back to normal. I continued to work as a secretary for the Regional Welfare office. Each time the treatment ended, I felt like I had a slight case of the flu. My body hurt all over. Sometimes I missed work because of the ill effects.
Prednisone is a primary drug used in chemotherapy. It is a magic, tragic drug; magic in that it stimulates the immune system. It is tragic in that it has serious side effects and it is not known how long it stays in your body tissues. When you go off Prednisone the instructions on the bottle should state to taper off little by little. My doctor had forgotten to include that. One Sunday night I began to eat everything I could find, like a starved African child who hadn’t had food for days. I knew what I was doing but could not stop myself. It was a horrible out-of-control feeling! After learning the hard way I made sure to taper off after that.
Another side-effect of Prednisone is insomnia. There were countless nights when I could not sleep until five in the morning. I came to know the night time hours intimately. A comforting sidelight was I was able to read plenty of books. It was fine for a while and then it became annoying. One early morning hour I arose from a sleepless condition and sat depressed at the kitchen table. The hymnbook was sitting on the kitchen table and I opened it.
The hymn
“Lead Kindly Light” was on the page. I read:
Lead kindly light amid th’encircling gloom, lead thou me on.
The night is dark and I am far from home, lead thou me on.
Keep thou my feet; I do not ask to see
The distant scene – one step enough for me.

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I arrived at Fred Hutch cancer center August 6th 1999. They tested my lungs, heart, teeth and I saw a gynecologist. I was told that the extreme chemotherapy would register me infertile. Well, I already had six children, so no worries there!
Unfortunately the doctors found an infection surrounding my central line. They treated the infection with a “big guns” chemo, Vancomycin. As the drug flowed into my central line my head immediately started itching terribly. I didn’t know it but I was having a major allergic reaction. I endured it for thirty minutes and finally mentioned it to the attending nurse. She promptly apologized saying that some patients reacted to the antibiotic that way. Whenever I received that antibiotic after that, I was given benedryl before each dose.

After a week on the Vanco I was told by the doctor the infection was still stubbornly present. They decided to add two additional antibiotics to my regimen. Less than a week later a rash began to envelop my body. When I pointed out my concerns to the doctor he basically said we would continue to watch it. Well, we watched it all right. It blossomed into a full blown second degree chemical burn from the inside out.

The nurse who specialized in skin rashes came to my aid. She gave me a combination of Lanocaine and Lanolin lotion to rub all over my body. I recall laying on the bed in the apartment while Beverly, my sister, rubbed the soothing pain-relieving lotion on my red, burning skin. It was difficult not to think about the pain so people tried to distract me. My friend Marion Davis came to visit one evening and stayed two hours. It was a welcome visit and did force me to think about other things. My daughters, Michelle and Kali came also that night to pick up free Mariner's tickets. They had not seen me for a little while and were actually startled to see their mother in such an uncomfortable situation. For me the discouraging part was the delay of my stem cell transplant. I gained some notoriety around the clinic however. I was known as the
“Queen of Rashes!”
I would have rather been known for something far less painful!

My friend took pictures of me in the original chemo chair after treatment was over. I’m very happy that I did that instead of trying to forget about it all. It is part of my life forever.

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In order to harvest stem cells from my body I was given daily shots in my stomach. This would stimulate millions of stem cells to grow. One night after a week of these shots I woke up with the most incredible pain in my back. I doubled over with the pain and only endured the rest of the night by pacing back and forth in the apartment. My body had made so many stem cells they were bulging inside the bone causing incredible pain.

The next morning the doctor gave me a shot of morphine for the pain. I could feel it swoosh through my body. It was a scary feeling, but the pain was gone.

Soon after the doctors harvested my stem cells. I had a double central line. One line took out the blood where a machine separated the stem cells out. The second line sent the remaining blood back to my body. The procedure took only an hour. My thought at the time was wonder and appreciation at this level of medical technology. To them it just seemed an ordinary procedure. To me it was a miracle. Another miracle was the amount of stem cells my body produced. They only needed a few million. My body manufactured fifteen million!!! I had finished the whole stem cell collection sooner than expected so I had a waiting time of two weeks before my stem cell transplant

My daughter, Kali Spark was due to have her second baby THAT very weekend. She was being induced. My heart deeply ached thinking of the possibility of seeing my grandson born. A thought came into my mind that I should telephone the doctor to ask permission to travel to Everett that weekend for the birth. The doctor encouraged me to go, and be back that night for the daily blood draw the next morning. I was exhilarated. I quickly grabbed the phone and commenced calling everyone to share the great news. It was a huge miracle for me. I know I was impressed by the still small voice to call that doctor. I know without a doubt I was being prompted. I know also that the Lord gives us tender mercies at certain times in our lives. A miracle came down from heaven that day.

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In the early morning hours of Sepember 25th, 1999, Ethan William Spark was born. It was a joyous occasion. Just before the sunrise my head hit the pillow and I looked forward to sleeping like a log. Instead I slept fitfully, dreaming that somebody kept tickling my nose. During my sleep major clumps of hair fell out on my pillow. I was more than shocked when I woke up and saw the hair lying on my pillow. The worse was here!! The next morning we saw Mom and baby.

That weekend I took the bold pro-active approach and asked my daughter-in-law Heather Marchant to shave my head. I was now officially bald! Family tried to console me by saying that I had a nice shaped pretty head. It didn’t make me feel much better. My husband and I drove to a wig shop, found a wig and bought it. It was very close to my hair color so it looked very natural. I only wore it to see the doctor and out in public.

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October 26th, 1999 the final dose of lethal chemotherapy was given to kill all my cells, good and bad. Only then can the stem cells be transplanted. I was given anti-nausea drugs and felt lucky I only threw up once. I was monitored as my blood counts plummeted to zero! I was a close to dead as possible without killing me!!!! Because my counts were so-o-o low I was forced to stay in the apartment. I could have no contact with anyone other than my caretaker, Betty Thelin. A few days later a fever erupted suddenly. Betty took me to triage at the clinic. I cried when I was admitted to the hospital. It became a very lengthy three week stay to save my life! There was a potty chair next to my bed at all times for the diahrea . Nothing touched my lips for three weeks, no food, no water. I was fed intravenously through snaking tubes surrounding my bed. My tongue peeled off layer after layer. The callouses on my heels peeled off like a perfectly peeled orange. A morphine drip was also set up for pain management. I had access to a clicker. When the pain was too much to handle I clicked a button and morphine would pour into my system.

Betty Thelin went home to Oregon to be with her family. She wasn’t needed as long as I was in the hospital. Vanity seemed so unimportant when I was fighting for my life so my wig remained in a drawer. I remember Melanie Keene and Annie Bork coming to visit me on my birthday, November 3rd. She said later that she was very shocked when she saw how ill I looked. She did not let me know that until later, however. My friends Beverly Anderson and Cindy Boswell came also and Beverly wrote loving words on the white board in my room.
“We love you Julie!”
I enjoyed such tremendous support and love from my friends and family. It helped in my struggle to get well.

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When I came back to the apartment from the hospital there was a sign saying
“You’re having a heart attack!”
Kali, my daughter had written a letter to the stake president asking if she could ask all the wards in the stake to write hearts of encouragement for me. The walls were full of hearts with words of enlightenment and love. There were some from people I did not even know. It was like they were all in the room giving me a group hug!!! I needed that for what lay ahead.

Being back from the hospital I was positive that the worst was over. A few days later my fever spiked again and I was put back in the hospital. They could not find the source of the problem. They got the fever down and I went home again. Three days later I was back in the hospital again. I went through this at least four times. On morning rounds six doctors would come into the room and tell me the same thing.
“Mrs. Marchant, we cannot find what is wrong.”
One day I yelled back at them.
“What do you mean, you can’t find what is wrong. You’re the doctors!”
Discouragement set in and a black cloud hung over me. I recognized that I could not get rid of the discouragement without a priesthood blessing. I called Seattle 7th ward and asked them to send over two men who held the priesthood to give me a priesthood blessing. I knew it would lift my spirits and give me the hope I needed. Through that sacred blessing I was told that the doctors would find the reason for my fevers. Early the next morning the doctors filed in as usual. This time their faces were not laced with heavy concerns, but were all smiles. A viral fungus had been found in my blood and they would prescribe medication that would eradicate it from my body. It worked like a charm. With no more fevers I was soon allowed to leave the hospital. I will be eternally grateful for the power of priesthood blessings!

December 21st 1999 I woke up and looked in the mirror. My eyelashes had fallen out, my eyebrows were gone, and my fingernails looked like they were going to fall off! I called my doctor in a panic.
“You didn’t say my fingernails and eyelashes and eyebrows were going to fall off!"
He quietly apologized, trying to calm me down. I left the office still very distraught! The whole day my spirits slowly descended lower and lower. I was despondent. A dark cloud shrouded my thoughts over and over.

I went to bed that night in tears. I laid awake not able to sleep. I said to God,
"You said you wouldn’t give me more than I could handle!!!”
A few minutes later I felt an incredible sense of peace. I felt the presence of my mother who had passed away when I was six years old. I felt my father’s presence as well. I did not see them but I felt each of them take one of my hands and gently hold them. This experience went on for about half an hour. At that time I felt their presence leave my bedroom. I promptly fell into a deep, peaceful sleep

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The next day I received a call from family in Portland, Oregon. The night before, my father passed away at 7:00 P.M. Looking back on that experience I realize my mother was re-united with my father for the first time in forty-two years. My mother had been diligently watching my situation. When she talked with my father she notified him of my problems. Before my father died he was in a rest home and at ninety-two and had no idea I was going through cancer. When my mother informed him of my condition I think they decided to come to comfort me. That sacred experience was the highlight of my life. I will remember it always with much tenderness and love.