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
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
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
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
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
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
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
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
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.