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June 2000 Volume 3, Issue 9:
A Patient’s Experience: Never Give Up!
By Stephen A. Walker
Stephen Walker shares his perspective on winning the battle with myeloma

September 24, 1998 is seared into my being as surely as my name. This can’t be true! Our family doesn’t get cancer—we get heart problems. (That turned out to be prophetic). How can this be? I had no significant exposure to the usual suspects: smoking, radiation and chemicals.

In those first moments I felt elements of terror, panic, gloom, grief, and even guilt. Our plans for retirement, travel, a home on the lake, had just crashed and burned! In those moments, hope was a word without meaning. On that dreadful initial day, however, something very good had begun that embodies all that hope truly is.

It all started one sunny late August day. As the manager of Ohio’s Portage Lakes State Park, I was at my desk shuffling the normal Monday paperwork. I yawned. A few moments later, I yawned again. By the end of the day, yawning every three or four minutes had become annoying. By Friday, I was forced to acknowledge something was wrong. I never was big on seeing doctors, but I didn’t object this time.

My family physician immediately recognized the anemia from my abnormal skin tone. The cause, she said, "could be anything from multiple myeloma to hookworm." "Oma"—what? This was not good. I knew that hearing "oma" from a doctor meant cancer and hookworm was not my problem. Like most of us, I had never heard of multiple myeloma until then.

The second blood test revealed the infamous M-spike. My doctor was as kind and gentle as she could be, but the words "no cure" and "life shortening illness" were devastating. The feeling of walking through that door labeled "Oncology/Hematology" as a patient was unreal. Acceptance was still just a word. I had been referred to an oncologist for a bone marrow biopsy to confirm or rule out multiple myeloma. I was a mental train wreck at this point. Morphine was the only thing that controlled the fight or flight syndrome and kept me on that table. It was confirmed – 40% cancer cells – on that September morning, which evaporated any remaining illusions something other than cancer was causing my anemia.

My initial reaction was a denial so strong it was almost as if I was someone else looking at me. "Look at him, he just found out that he has cancer. What a bummer!" Then another part of me gently tugged me back to reality. "That ‘him’ is you, Steve. You need to begin dealing with this." Quickly, denial turned to overwhelming grief and sadness. My family also reacted with varying degrees of despair, denial and anger. Tears flowed and the furniture took a pounding from fists and flailing feet.

That "very good something," however, began later that day. Our family, Sandy and I (age 51), our children Steve (24), his wife Jennifer (22), Greg (23) and Jocelyn (20) have always been close. Call it what you will; circling the wagons, closing ranks, or attitude adjustment, but the positive started with their help.

We have been involved as a family in the sport of wrestling from grade school through college with our boys. Even our daughter has been involved as a stat girl. Steve told me that evening, "Dad, treat this as the biggest wrestling match of your life. Never give your opponent an opening, believe that you can beat him and never quit." Our three grown children do not leave our home or hang up the phone without saying, "I love you, Mom, I love you Dad." I truly wish that all cancer survivors had that kind of support. That is one of many rich blessing the Lord has given us.

I was referred immediately to Dr. Mohamad Hussein, Director of the Multiple Myeloma Program at the Cleveland Clinic Foundation. I have come to love and respect this wonderful man! On that first visit, however, I was confronted with the reality of what it takes to fight this cancer. Do I go the chemo route or BMT? How can I make such a decision determining the length and quality of the remainder of my life? The decision could not be delayed. Sandy and I talked it over and prayed about our decision. We chose the chemo.

A month after my diagnosis, an IMF seminar was held in Cleveland. The timing could not have been better. The information we received was so valuable. Perhaps for me at that time, the most important aspect of this seminar was meeting other MM survivors for the first time. I was no longer alone. I could fight back just as they were doing against this rare malady.

It happens I was a good candidate for a clinical trial using Rituxan in combination with melphalan and prednisone. They warned me about a probable reaction to the first dose, which might occur about an hour and a half into the infusion. They were right on the money! Severe rigors – I shook like a leaf in a hurricane. My initiation into the world of side effects. It happened again later with my first IVIG (gamma globulin), which I now get each month.

In November, a severe bout with bronchitis and pneumonia delayed the start of the MP until December, causing further anxiety. By January my hemoglobin had risen to about 11.5 from a low of 7.9, but the fatigue had not changed and I was getting weaker. After several tests, it was determined that my heart was severely weakened. A heart biopsy was necessary to determine the cause. The fear was amyloidosis.

Just as I had come to a point where I felt that I was effectively dealing with myeloma on all levels, there was a new crisis. A tube, with a camera and pincers to take six little pieces of my heart, was sent down my jugular vein into my heart. Physically, it was easy and painless. The mental preparation, though – with a 5% mortality rate – was much tougher. I dealt with this through prayer and watching the TV monitor. I was amazed at the immediate calming effects of answered prayer.

The diagnosis was good news and bad news—no amyloids present, but moderate to severe myocardial fibrosis (scar tissue). A probable viral attack to the heart when I was sick in November is the suspected cause. My cardiologist, another terrific doctor, put me on several heart meds which dramatically improved my level of activity. What really hurt, though, was the necessity to give up officiating football and wrestling. As he put it, "You are now walking a tight rope" insofar as any strain on my heart is concerned.

Since then, there have been other trials, hills to climb, battles fought. By September 1999, bone lesions and plasmacytomas had produced a number of nagging pains. After 24 radiation treatments, much of the pain had subsided. Entering the Aredia-Zoledronate trial has also helped greatly. The continuing lesion problem, however, indicated that all was not well with the Rituxan therapy. BMB #5 confirmed that – 69% myeloma cells. The protein numbers had come down but the cancer cells were not being killed off.

In January this year, we changed from Rituxan to high dose melphalan and thalidomide. Six days after the first dose, I was in the hospital with pneumonia. I recovered quickly and have settled into the routine of giving myself Leukine and Procrit shots and taking 400 mg. of thalidomide daily. The side effects I am experiencing are tremors, hiccups and bad tasting food. Fatigue has been my frequent companion. But I feel very fortunate and blessed. The lesions were caught before bones broke or vertebrae collapsed. IGA and Kappa numbers are at their lowest since diagnosis. I’ve survived three bouts of pneumonia, one of the greatest dangers to MM patients. I am still working, playing golf, attending church, going out with Sandy and enjoying our wonderful children. We have traveled to Scandinavia and went on a cruise of the Hawaiian Islands this April.

There are many who have been dealing with multiple myeloma longer than I. To me they represent real hope in our collective fight. Some of the best advice I was given is to treat this as a chronic illness with its attendant ups and downs and adjustments. There truly are advancements being made in the treatment of multiple myeloma. The pamidronates are only a few years old as are the drugs to stimulate white and red blood cell production. Thalidomide wasn’t used until after I was diagnosed. Other new therapies are being developed as I write.

To those of you who are new to the front line of the battle: It will not be easy, but there are things you can do to be much more effective in your struggle. You will discover hidden resources within that you never knew you had. Focus on what you have, not on what is lost.

Rule #1: Don’t fight alone. If others want to help you, let them! Give them something to do (drive you to your treatment, cook dinner, watch the kids, feed the cats). They will want something concrete to contribute and it will help save your physical and mental energy for the task at hand.

Rule #2: Develop a support system of family, friends and co-workers. Connect with a cancer support group through hospitals, churches, or social service agencies. This is important. Sooner or later you will need to talk to someone, share feelings, fears and triumphs. Even better, you are likely to find yourself helping someone else. That can give real meaning to your struggle in that "all is not in vain." It is good medicine for you and others, like a shot in the arm without the needle! We can relate to that!
Rule #3: Don’t worry about tomorrow. Don’t engage in the "what if" game. That does not mean don’t plan and set goals for that is a very healthy and positive thing to do. There is enough to do today and no one is promised tomorrow!

Rule #4: Set goals. Short- and long-term goals require planning, build hope and give you a positive outlook. It has been proven that those with a serious illness do much better if they have a positive attitude. Try to remain positive, even when the going gets tough. Like anything else, the more you practice the better you are at it.

Rule #5: Take someone with you when you visit the doctor. It serves as part of your support and helps ensure that you don’t miss important information. There will be visits that go very well and others I call "high anxiety visits." Your mind will wander and you need someone to help listen, ask questions, and take notes. You will also need someone other than doctors and nurses to help you sort out fears, problems, decision-making and remaining focused.

Rule #6: Do not neglect the spiritual you. As a Christian, I will testify that prayer has aided me in remarkable and specific ways. The connection between the spiritual and physical is little understood; however, it has also been shown that those with a strong practicing faith experience (no matter what faith), improved prognosis and quality of life when battling serious illness.

Yes, I and many of you have myeloma. The question is no longer "What if?" but "What forces do I need and how do I marshall them to be most effective in this fight?" Life is a beautiful and precious thing. I now have a new perspective on just what "living" really means. Priorities are crystal clear. Material things are much less important. Relationships are of tremendous importance.

I have been richly blessed with a wonderful family; a job that most people only dream of; true and loyal friends; and a healthcare team that is second to none. I have no cause to whine now just because I hit a couple of bumps in the road. In the words of John Paul Jones, "I have not yet begun to fight."

Never, never, never give up! God bless all of you in your battle with multiple myeloma.

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