Today everyone knows someone who either has or had cancer. In December of 2002, Carol Franz discovered her pain wasn't caused by the humidity in upstate New York. It was multiple myeloma-bone marrow cancer. Because she received two adult stem cell transplants to extend her life, Carol will tell you things only someone who has "walked the walk" can. Blending her sense of humor with an unshakeable faith in God, Carol relentlessly provides up-to-date information that just might save a life. Everyone should have the opportunity to learn of adult stem cell research. Carol had her health returned, but others may not due to lack of adult stem cell knowledge.
There But For the Grace of God
Surviving Cancer with Adult Stem Cell TransplantsBy Carol J. FranzAuthorHouse
Copyright © 2009 Carol J. Franz
All right reserved.ISBN: 978-1-4389-6869-8Contents
Acknowledgments.......................................................................viiPrologue..............................................................................ixChapter 1: What's Going On?...........................................................1Chapter 2: What's Up with This Pain?..................................................3Chapter 3: Uh-Oh, Pain Does Have a Name!..............................................9Chapter 4: My First Non-Maternity Hospital Stay.......................................11Chapter 5: Charted Territory..........................................................17Chapter 6: Syracuse, Here I Come......................................................23Chapter 7: It's Going to be a Long, Long Winter.......................................25Chapter 8: Spring Brightens my Life...................................................35Chapter 9: Darkest Moment in the Valley of the Shadow of Death........................41Chapter 10: Hope and Healing..........................................................65Chapter 11: Winter Escape.............................................................73Chapter 12: First Anniversary of my Adult Stem Cell Transplant........................75Chapter 13: Stepping Out..............................................................77Chapter 14: Second Anniversary........................................................85Chapter 15: Shirts and Letters Tell the Tale..........................................91Chapter 16: Westward Ho...............................................................95Chapter 17: Still Going Strong........................................................101Chapter 18: Texas, Here We Come.......................................................105Chapter 19: Election Day in Texas.....................................................109Chapter 20: East is East..............................................................113Chapter 21: Guess What's Back?........................................................119Chapter 22: Cowboys and Cowgirls......................................................123Chapter 23: And So it Begins..........................................................125Chapter 24: Letter from the First Lady................................................127Chapter 25: Decisions, Treatments and Whatever........................................129Chapter 26: Whoops!...................................................................139Chapter 27: Hurry up Already..........................................................143Chapter 28: Here I Go, Ready or Not...................................................145Chapter 29: Adult Stem Cell Transplant #2.............................................147Chapter 30: Mission Year 2007.........................................................165Chapter 31: Mrs. Franz Goes to Washington, DC.........................................173Chapter 32: Jolly Ole England.........................................................179Chapter 33: Busy, Busy and Busier.....................................................183Chapter 34: On the DC Circuit Again - Is Anyone Listening?............................189Chapter 35: Have Shirts, Will Travel..................................................193Chapter 36: Carol in the White House, Oh My...........................................195Chapter 37: President George W. Bush Meets Determined Carol Franz.....................201Chapter 38: Home Again But Not for Long...............................................207Epilogue..............................................................................211References and Sources................................................................215Letters of Encouragement..............................................................219
Chapter One
What's Going On?
One day when I helped Mom up off the couch, I experienced my worst shoulder pain ever. I figured I had pulled a muscle and while I was getting some ice for it, Mom was attempting to wash a pair of slacks using half a bottle of detergent - which sure can make a lot of suds in a washing machine! I wanted to laugh but felt like crying. She was unaware of anything out of the ordinary happening. My life was certainly not what I thought it was going to be in Bill's retirement years from IBM and Lockheed-Martin.
My mother was suffering from Alzheimer's and I wanted to care for her as she had cared for me all my childhood, but physically I didn't feel up to it. Since I was the eldest daughter and lived just one block from my mother, it was obvious to me that I should be her primary caregiver. When I looked at Mom's confused face, I felt love, pity, and sorrow - and I just longed to help her.
I didn't feel well but I assumed it was due to all the stress caring for Mom and my daughter's divorce. Living in upstate Owego, New York in 2002 shouldn't have been stressful; the village only had 3800 people living in it, and it was a peaceful farming area where the biggest industry was Lockheed-Martin. My three adult children, Craig and his wife Julie, Terry, and Daniel as well as my grandchildren, Tyler, Molly and Abigail were joys to me, and my life wasn't usually this chaotic. But for some reason I was feeling so tired and exhausted that I thought I was a real wimp at 60 years of age.
I kept having recurring, awful headaches to the point where I applied as many as three ice packs at one time in the hope of relieving the pain. I cried uncontrollably because the pain was so severe.
At the time I wasn't up to dealing with Mom, so my husband of 41 years talked with her about the future. She asked Bill to find her a place to live where there were other people her age. I have always kidded around with Bill that "Mom likes you best."
On Mother's Day, I spent the day with Mom, who wanted to use the phone. She said "That damn woman on the phone kept telling me to hang up and dial again." Also Harry, her cat, "wouldn't eat the peanut butter sandwich she made for him" and that upset her. She asked me, "When did the woman say I could move? When is she coming to take me to where I'm going to live?" She was referring to the social worker who interviewed her about moving. Poor Mom was so confused. It was so scary and frustrating for her. She asked me if she was losing her mind. Every time I was with her, I kissed and hugged her and told her I loved her so she had human touch and contact.
A few days later, Bill, Dan (our son who was visiting us after graduating from the University of Arizona) and I moved Mom, her bedroom set, TV, rocking chair and cat Harry to a boarding house. At the boarding house Mom joined four other elderly women and the family who cared for them. Even though Mom wanted to move and my sister Sue and I agreed, I was getting flack and stress from a few people for putting Mom there. I was feeling pretty depressed until our eldest son, Craig, called to tell us his wife Julie was pregnant again. How exciting to receive cheerful news about another grandchild to love!
Chapter Two
What's Up with This Pain?
A few days later, my chiropractor's assistant said, "Your muscles are a train wreck in your feet, legs, back, and sternum." I assumed it was stress, but there wasn't much I could do about that, since I was receiving daily phone calls from the boarding house due to Mom's erratic behavior. My own symptoms continued to worsen.
In early June, Bill and I drove twenty-one miles to meet with Binghamton General Hospital doctors and two social workers concerning Mom, who was being evaluated at the hospital to determine if she should remain in the boarding house. They wanted her in a nursing home. The doctor just stood there, said very little and then shook Bill's hand as if intending to leave. I wouldn't shake his hand goodbye and told him I wasn't done discussing my mother yet. They were all in a state of shock because I didn't kiss his ring and act like the doctor was a god. I didn't agree with their treatment or what the social workers said about Mom not going back to the boarding house. A nurse at the hospital took me aside later and hinted I should get a second opinion concerning Mom, which I did. Duh! Mom went back to the boarding house.
It didn't help that Mom's extended family undermined my care of her, causing me so much stress and heartache that I couldn't eat, just cry. I went back to the chiropractor due to a pinched nerve and pain in my shoulders and hip. I couldn't even bend over to tie my shoes! I got home to find there had been a mix-up on the medi-van for Mom's transport back to the boarding house. I was laid up and hurting but got the problems solved. I tried swimming and walking in our swimming pool because I thought it would help but it was just too painful.
The summer weather had been so warm and sunny I wanted to be outdoors more. I attempted it but the humidity, which averaged around 80%, drove me back inside the house. I tried doing yoga but my chest hurt and my left arm was numb. I found I had to ice the pain daily. Some folks kept telling me my pain was just arthritis and to ignore it. Another goodie I kept hearing was that I was no "spring chicken" so of course I'd have aches and pains.
A few days later the pain was so incredible that it felt like an elephant was stepping on my chest, so I had Bill drive me to Wilson Hospital's emergency room, about fifteen miles from home. I had chest x-rays, an EKG, and blood work. My right arm had four bruises where a nurse attempted to put an IV line in. All the tests came out fine except for an elevated "sedition" rate, which meant there was infection or inflammation in me. Nonetheless, the doctor told me to go home, rest and take prescription drugs.
Here was a first! I wasn't hungry but had to eat to take the medicine. My chest really ached from armpit to armpit as well as across my back and shoulder blades. I saw both my chiropractor and my family physician and had blood work done. The Emergency Room doctor informed my family physician that I was diagnosed with costochondritis or Tietze Syndrome which would account for the pain in the collarbone and sternum.
I was visiting Mom several times a week but my bones hurt so much I couldn't go as often as I'd have liked. Besides the pain, I had trouble with sinus and allergies. I was getting used to pain every day, but when I tried the ten-minute walk to the center of the village where the shops and post office were, I could only get to the corner of my street before I hobbled back home. For the first time, Bill realized something was terribly wrong since I could hardly walk.
I was and still am a determined woman. Toward the end of the summer, Bill and I went on a previously planned trip to Williamsburg, Yorktown, and Jamestown, Virginia with Craig, Julie and Abbey. I rested a lot, but when we were at Busch Gardens I thought I pulled a muscle in my pelvic area.
Back at home I tried to get an appointment with an arthritis specialist but I had to wait two months. I was still receiving stressful calls as my extended family just didn't understand Alzheimer's disease and questioned my care of my mom. I read all the information I could about Alzheimer's and did everything suggested by the doctor. I loved my mom and of course wanted only what was best for her.
Dr. Cooke, our family physician, called to say my sedition rate still showed problems somewhere in my body. He told me this wasn't normal for a woman my age. He said my sed rate may have been elevated for a long time, possibly even when I lived in England during the late nineties. Dr. Cooke told me to call Dr. Michaels, a rheumatologist, the first thing in the morning and see if a cancellation appointment was available. I was to keep taking Vioxx medicine. There were still no answers on my condition but I did receive paperwork to take to a specialist. Even though I didn't feel well, I cleaned out more of Mom's stuff and gave it to charity. Then I went home as it was getting difficult to walk even though her house was only a block away.
Praise the Lord, I got an appointment with Dr. Michaels at Binghamton General Hospital. He asked lots of questions, checked my eyes, had blood work done and x-rays. I had a bone scan done as well.
In October, Bill and I attended Bill's 45th Owego Free Academy Reunion at the Owego American Legion. I cried when Mary Hinchcliffe (my friend from California) asked me what was wrong as I was "not myself." Susie Dickinson from Owego, New York also questioned me on my health, saying I was too quiet and not dancing or visiting. These women only saw me once in a great while, yet they noticed something wasn't right. Once I got home, my head hurt so badly that I was up until 4 AM.
Three days later I saw Dr. Michaels, who said I had a stress fracture in my pelvis and tendonitis in both shoulders. He sent me for physical therapy and also prescribed pain killers for me. After my visit, Bill drove me straight to a drugstore. I had to walk some distance from where we parked, even though the doctor told both of us I shouldn't walk. Bill was relieved to hear I was not dying and that I had a diagnosis, but he still didn't quite "get" how bad I was feeling.
I was aching something fierce. Bill wanted to go out to eat and at first I said okay, but then I said I was very tired so he parked the car back in the garage and stormed into the house. I went to bed and rested. He wasn't as patient with me since we learned that I wasn't terminal. I've been told it's a "guy thing!" The next day, though, Bill was very helpful. I told him how much I appreciated all he did for me. I kept thinking to myself, what a difference a day makes.
Dr. Cooke put me on medicine for a sinus infection and also showed me a report from Dr. Michaels which said my chest pain was unexplainable. The next day, I saw Dr. Michaels again, who thought my headaches might be giant cell arteritis - an inflammation which causes the artery to narrow or become blocked, allowing too little blood to pass through. He put me on a high dose of Prednisone. Bill would accompany me to the plastic surgeon for the temporal artery biopsy.
I was still visiting Mom but only two or three times a week, as I felt so exhausted and hurt so much.
Early November, I met with a plastic surgeon, Dr. Peter Fluczk, whose office was near Binghamton General Hospital. Dr. Fluczk made an incision in my head and took a section of artery out for a biopsy. Dr. Fluczk said Dr. Michaels may want the other side done even though there was no pain there. The "glue" used to close the incision near my hairline felt weird and my blonde hair looked a mess. A week later, I went for the other biopsy to be done on the left side artery. Dr. Fluczk said he found only a slight hardening of the arteries. Dr. Michaels said if the new procedure was negative, my Prednisone intake would drop from 60mg to 15mg for about a month, as there was still a 95 sedition rate and inflammation. He took blood for, as he put it, an obscure blood test that he didn't even want to mention, but as none of us knew what caused the 95 sed rate, we would still investigate. (A normal sed rate is around 33.) Bill made a comment suggesting that I was putting on an act about my illness. I replied, "If you are not part of my solution, then you are part of my problem - and as far as I am concerned, you can just get out of my way."
Prior to Thanksgiving, Bill and I left on a trip to Las Vegas, Nevada to visit our son, Daniel. I blessed his new apartment with holy water.
On November 26, our 42nd wedding anniversary, I started taking 10mg of Prednisone, and put in a call to Dr. Michaels. About 10 PM Pacific Coast Time, Dr. Michaels called me from New York to say I needed to see a hematologist since my blood test showed too much protein was being produced in my blood. He said something that sounded like "benign mono gamma opathy." I told him about the meds, the swelling near my collarbone and on my back at the top of my shoulders, and also that my headaches had returned.
In the early evening, to celebrate our anniversary, Bill and I checked into the Bellagio, a beautiful Italianate hotel and casino. We had dinner at Caesar's Palace and attended the Cirque du Soleil. I soaked in the huge tub in our hotel room, thinking it might help me feel better since I always seem to be aching.
At last the time came for us to return to New York State. Bill was impatient with me as I gimped through the airport. I probably should have used a wheelchair but was hesitant to say so. I slept a great deal on the plane.
When I saw Dr. Cooke, he told me to tell Bill to be patient. Dr. Cooke explained that Bill was mad at the illness as well as his inability to help me get well, which is why it seemed Bill was angry with me. What was it with this guy thing?
Bill and I met again with Dr. Michaels. The doctor wanted to be faxed all information from the hematologist, Dr. Arun Sheth. Dr. Michaels said a blood disorder could be responsible for the muscular and joint pain. Dr. Cooke informed Dr. Michaels he had contacted Dr. Sheth and set up an appointment to meet about my blood work.
I called the home where Mom was and found out she had a cold, so I was unable to visit her.
As we had purchased nonrefundable tickets a while ago, Bill, our friend Kathy and I took a mid-December bus trip to Wellsboro, Pennsylvania Dickens' Festival. The temperature was 19 degrees while we were there. We had a nice day but on the trip home, the pain in my head was the worse it had ever been. I sat in the last seat in the bus so no one would see me and cried most of the two-hour ride home. Kathy told me later that she could hear me and it was obvious I was in great distress.
On December 10, we traveled fifteen miles to Lourdes Hospital to meet with the hematologist. When we entered Dr. Sheth's office I saw that he was also an oncologist and I exclaimed, "Bill, this is a cancer doctor's office!" Dr. Sheth reviewed my bone marrow biopsy, x-rays, and blood tests. He said the blood was producing too much protein and it could be pre-cancer, cancer or none of the above. But in his experience it had never been something else. When I returned home, I telephoned Joan Lewis, my neighbor, who prayed over me. I also called my friend Sarah Hall, who put me on her prayer list and phoned another friend, Sandy Ross, to put me on a prayer chain.
I notified Terry, Craig, Julie and Dan of the tests and Dr. Sheth's suspicions. I also phoned family and friends. It is so wonderful to have a praying community. I received an emotional e-mail from Diane Fierle (see letters of encouragement). My friend Krys called from Australia about the cruise we were planning to do together with our husbands. We'd become very close friends when we lived next door to each other in England. I told her what was going on, and she assured me she'd keep me in her prayers.
I called Darlene, Mom's caregiver at the home, and checked on Mom.
We'd just had a big snow storm, and Bill went outside to clear the snow from our driveway and our neighbors'. He went shopping for groceries but he had to call me several times on his cell phone to find the items on the shelves. Life goes on with everyday occurrences.
I looked up blood disorders on the computer, but it was so discouraging that I thought I'd wait until I had a diagnosis. I had enough trouble; I didn't need to borrow any more!
Chapter Three
Uh-Oh, Pain Does Have a Name! On December 17, 2002, Bill and I were told by Dr. Sheth that I had cancer -monoclonalgammopathy, a myeloma in the blood marrow. After nine months of searching for answers I had a diagnosis: Stage 2 - Multiple Myeloma. The doctor told us chemo should be started as soon as possible but we could think about it for a week or so. Bill told him we had plans to travel to Malone for Christmas with our son and his family. Dr. Sheth says I could live many more Christmases if I began treatment right away. We decided to start immediately. Statistics say that only 3 out of 100,000 people get this form of cancer. Leave it to me to be unique! It usually affects elderly, black men. HUH!
(Continues...)
Excerpted from There But For the Grace of Godby Carol J. Franz Copyright © 2009 by Carol J. Franz. Excerpted by permission.
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