1953 / Class of '99 / Last Update: 10/00
Holidays always help us remember life experiences, and so it is with my
story. We had gone to the beach for Labor Day weekend, September of 1998. My
back had been bothering me and I had taken a heating pad along in the hope that
I could get relief and enjoy the weekend. We met friends and family and the back
pain was annoying, but tolerable. The ride home was the worst and by the time we
arrived home, my entire back was in horrible spasms. I couldn't stand to be
touched. I made it into the house and carefully laid down as I cried and
sometimes screamed with pain. I didn't sleep at all that night. The next
morning, we went to our primary care physician. He examined me and gave me a
muscle relaxer and pain medication. I was to have an x-ray of my spine when the
pain became more tolerable. I spent the next week in bed. My back seemed to
I had the x-ray and went back to work as a school librarian. Of course when I
returned to work, everyone had the name of a great chiropractor, doctor or
acupuncturist. On the follow-up visit to my doctor, the x-ray results indicated
that I had normal deterioration of the spine for "someone of my age",
44. My back flared up a few times over the next few months, though never as
severely, and the doctor continued to prescribe the meds. In March of 1999 my
husband and I were planning a trip to Switzerland. Early in the month, I went
back to my primary care and told him we were planning a trip and I wanted to
enjoy myself. I asked for a definitive diagnosis. He ordered an MRI. By now, the
pain had become more intense. Driving over a pothole could make me want to
scream and sneezing was a major production. After performing the MRI, the
technician asked what I had been told was causing the pain. I told her about the
x-ray results. She had a look of concern on her face and indicated that she
would fax my results to the physician immediately. I was thinking she must have
noticed a slipped disc or something. We drove to the doctor's office. By this
time, I could barely stand to walk. Once in the office, I asked for something
for pain, immediately. He said, "do you know what I mean when I say
Multiple Myeloma?" I am a former nurse, so I indeed knew that the suffix
"-oma" meant cancer, even though I had not heard of this type. I
couldn't believe that for six months I had been misdiagnosed, and at age 45, I
was facing an incurable disease. He ordered visits to an ortho doctor (who
refused to see me because my primary had not submitted the proper paper work),
and a neurosurgeon.
When the neurosurgeon saw my films, he sprung into action. I had four tumors
pressing on my spine and several spinal fractures with cord compression. From
there it was a whirlwind. I was immediately admitted to the hospital. This was a
Friday and the head of Radiation Therapy was contacted to begin treatment
immediately that weekend. My primary care selected an oncologist for me and he
did the bone marrow aspiration and gave us the grim news. I was in stage III
with 70% CA cell activity. He said that if I had continued to go untreated, I
could live 4-6 more months. I was to had 14 radiation treatments followed by six
cycles of VAD and then a BMT. The radiation made me sick. I tolerated the chemo
pretty well. Some quirky sidebars were several episodes of excruciating leg
pains that lasted for hours and feet and ankles that were three times the normal
size for about 3 months. I had bilateral pneumonia in May. I was very close to
dying. I was in ICU for a week and had to have a transfusion. I had been working
up to that point in a new technology position. Between all day chemo for a week
each month, and hospital time, I used all my leave and had to take early
In November I had pneumonia again and in January 2000, I had bronchitis.
Seems like any germ going attacks my respiratory system. My NEW primary care
suggested a pneumonia shot. At the end of the six cycles of chemo, a bone marrow
aspiration was repeated as well as a skeletal survey. I still had about 7% cell
activity. My onco decided to go for 2 more cycles of VAD. I had also started
Aredia once a month. In December, we made the trip to what had become my OZ...
Johns Hopkins. The front desk sent us to the wrong floor and that made us late
for my appointment. The doctor I was to see refused to see me because I was
late. Although this was a huge emotional letdown, I realized that someone that
cocky was not my kind of doctor. The following week, my onco referred to another
onco/hematologist closer to home. He is fantastic and very compassionate. I'm
now in the midst of getting pre-testing done for a peripheral stem cell
transplant. It should happen within the next month.
I have the feeling this will be the hardest part of my journey.
October 2000: After beginning the preparation for PSCT
in March, I had a good cell collection on March 26th. The procedure was done at Holy Cross Hospital in Silver
Maryland. I waited for my oncologist to return from
vacation to proceed with the transplant which took place
on April 13, 2000. I was in the hospital for only 3 days
post transplant, then went to a house that the hospital
owns across the street, to continue my recuperation. That
also kept me close enough for daily counts and catheter
care. I remained at the house for the next 8 days.
The worst complication that I
experienced was a severe sore throat, unbearably painful.
I was discharged on Easter Sunday. I had to be readmitted
about a week later with a fever of undetermined origin. My
dual port catheter was removed and lots of blood cultures
were done. I had an intestinal bug which was treated with
IV antibiotics for a week.
I have been doing fine since then. I am 6 months in remission.
I am feeling well except for the vertebral fractures I
have had since the beginning of all of this. On September
12th I had a vertebroplasty performed to try and alleviate
some of the discomfort.
I had done a year's research to find someone locally to
do that and found a Dr. Wayne Olan at Suburban Hospital in
Bethesda. The discomfort is diminished, but still there.
My concerns now are more emotional. I was a very active
person before and now I feel well enough to do some
things, but I am unable to work. I am 46 years old and
very displaced. Fighting cancer and becoming a survivor is
ultimately a very solitary thing.