Monrovia, CA; Trtlefrog@aol.com
1948 / Class of '96 / Stage III Kappa LC / Radiation,
VAD, PSCT97, Aredia /Last
Diagnosed 9/6/96 with Stage III Kappa Light Chain Multiple Myeloma. I was
born in a very upscale residential suburb of Los Angeles in 1948. I have lived
in this simple All American City all my life. I never broke any bones or spent
any time in the hospital until I was 47, when I was bit by a spider and had
blood poisoning. I did have allergy problems all my life and tested out having
problems with pollens and things for every season along with bees and wasps, and
everything else that bites. The only illness I had was Hepatitis A when I was
18. I have lived where there are no agricultural or industrial or electrical
hazards to encounter. My work is very suspect though. I worked for Pacific Bell,
in Los Angeles for 24 1/2 years as an installer, repairman, supervisor and
administrator. Fires, floods, earthquakes, riots we were always the first to go
in and clean up or be a part of it. I have worked in houses that had every door
handle golden to shacks of cardboard, businesses from mom and pop's groceries to
the President of the United States. Hospitals were my specialty, St Vincent's,
Queen of Angeles, Temple Hospital, Ross Loos, and Good Samaritan. Insurance
companies and airlines gave me fits maintaining their switches. Many of the
chemicals we used then are now declared unsafe. We used these to repair switches
and batteries. Asbestos was a common partner for many years due to the time we
were required to be in attics and crawl spaces. The possibility of contamination
from foreign material was always suspect due to the types of locations and
situations we encountered.
My Myeloma story started, I believe, on July 6, 1993, when I was rear ended
as I was stopped at a traffic light. This resulted in a whiplash to my neck that
nagged me for years. On September 12, 1993 after going to the doctor for a
physical, the doctor asked me when did I have a heart attack? (I did not know I
had one) On October 11, 1993 one of my technicians was electrocuted and fell off
a pole, breaking legs and arms. Incident was investigated by OSHA. October 13,
1993 Subsequent heart tests proved that I had a right bundle branch blockage not
a heart attack. October 14, 1993 Regional Manager met with me to see if I was
going to be part of his team of the future. He did not seem to understand what I
was going through. November 12, 1993 a very likeable technician from our group
committed suicide at his home. November 13, 1993 met with the Vice President of
Pacific Bell to deliver safety investigation and OSHA recommendations. November
14, 1993 had an angiogram and found Mitral Valve Prolapse as an inherited
December 14, 1993 mother died from long illness. December 15, 1993 a technician
from a remote location committed suicide after work. The location was warned
about copy cat issue but refused to do any counseling. January 16, 1994 visit to
doctor had blood pressure of 178/110 (normal is 120/80) and I decided to retire
from Pacific Bell as soon as possible. I am only 45 years old. March 28, 1994
after 24 years 6 months working for Pacific Bell I retired feeling like one
million pounds was lifted from me. July 28, 1994 father died in an automobile
accident in Michigan going to a high school reunion. August 17, 1994 started
Horticulture classes at Mt San Antonio College taking two night classes and
loving every minute. My goal was to eventually hybridize roses, my favorite
December 15, 1994 started working at Armstrong Garden center in Monrovia
selling plants and chemicals to the retail public for gardening needs, still
going to school also.
February 1995, hurt right wrist moving plants. Eventually diagnosed as Carpal
Tunnel Syndrome with cortisone injections necessary in December.
January 1996, follow up visit for blood pressure and wrist, start complaining
about pain in my upper back on the left side. Doctor could find nothing wrong.
March 1996, follow up, pain now right front ribs and left hip. Doc can't find
July 1996, pain in upper back again, keeps changing after a week or two
August 5, 1996, out pulling weeds in my garden, I felt a pulling from both
sides of my neck radiate down both sides to my shoulders. I thought my head was
going to fall off and I was afraid I couldn't move. I was all alone so I sat
there waiting until I was able to get off my knees and walk to the house. The
pain did not get bad till later, then I went to the doctor who said it was just
a strain. The next day I was scheduled to have a physical anyway.
August 6, 1996 had a physical today, chest x-ray, EKG, blood work, urinalysis
everything seemed OK, results from blood work, urinalysis, EKG were normal.
August 29, 1996 Cat Scan taken when lesion showed on chest x-ray. Results
were hosts of undetermined origins.
Sept 5, 1996 visited oncologist recommended a day in the hospital to do
Sept 6, 1996 got out of car to enter hospital and neck froze up with horrible
pain. Two shots of Demerol made me able to cope. MRI, full skeletal x-rays,
Nuclear bone scan, Bone marrow biopsy, Blood work, urinalysis, etc. Results were
compression fracture of C2(neck), T10-11 (back), L4-5 (Lumbar Back), R4-5 (Left
back ribs), and R11-12 (front right ribs), Multiple Myeloma Stage III. They
brought me home in an ambulance the next day, I could not hold up or move my
head at all.
September 11, 1996 entered Arcadia Methodist Hospital to receive radiation
treatments for neck. This was a treat, they had to strap me to a racing gurney
and take me across the street to the race track, Santa Anita, where the
radiation unit was. This was done for two weeks in the hospital. I was on
morphine for the pain still unable to move at all. Finally I was starting to be
able to move a little then they shipped me home. I was on 100 mg MS Continin,
muscle relaxers, a 75 Duragesic patch plus others. My problems came when I had
to change and clean the Groshong catheter. I was lucky to be able to have a
nurse come and clean and change that until I had it removed.
October 1996 because of the radiation and neck problems, I had lost 40 pounds
being unable to eat, opening my mouth was difficult. I started on VAD, I went to
the oncologist on Monday and received a fanny pack pump then returned on Friday
had it disconnected and received an Aredia infusion. The VAD caused my blood
pressure to go up and eye problems. Tried medications to stabilize BP but
determined the DEX was causing the reactions and it was not worth it to fight
October 17 had an emergency meeting with a neuro-surgeon about my neck. The
recommendations were to fuse it or to have to wear a halo. We decided to try a
second MRI of the neck. After a week of indecision it was determined that I
would have to just wear a cervical collar.
February 1997, VAD treatments wearing down and it was decided that I would
receive a PSCT after 6 treatments. My wife and I planned a trip to Baja
California to go marlin fishing during her Easter vacation and my wait for the
PSCT in June.
April 1, 1997 best vacation I have ever been on.
May 20, 1997 received first Cytoxan and new Hickman catheter. Started giving
shots of Neupogen to myself. This is a joy for a person with a very shaky hand
June 3, 1997 first day of Pheresis (stem cell removal) only one try needed,
they got three times the amount needed.
June 17, 1997 entered UCLA, Busulfan and Cytoxan used to nuke me.
June 24, 1997 stem cells returned transplant completed, waiting for immune
system to start to work again. My stomach felt like it was cut up into little
pieces then thrown back inside, my strength was shot to hell and eating was no
longer enjoyed or wanted.
July 6, 1997 after removing my catheter (infected) I was discharged and sent
home. I was returned three days latter, infection for three days, then released
for good. Eating was not enjoyable, morning sickness 24 hours a day. To eat you
have to take a pill so you don't throw up or feel like it. Slowly things start
to come around.
October 1997 Aredia has started again 90 mg every month and I am on 50 mg of
Prednisone. I am completely disabled and on social security, at 49 it is odd to
be home all by yourself after so many years. My neck has not healed and my left
hip is still acting up but I am finally feeling more alive.
June 17, 1998 I have just gotten back from my son's graduation from college
in Oakland. It is important to keep your mind off the negative and hurting and
focus on positive thoughts. For me it has been different goals. I set up
monthly, quarterly, six month and long range goals. My original doctor did not
expect me to be here now. Prayer and attitude and confidence of those around you
help give you the power to fight this beast. I am still on a 50 duragesic patch
every three days, 30 mg Prednisone every other day and 90 mg Aredia once a month
for four hours. The neck still hurts every day and my left hip is painful to
walk on, but bearable. If I work out side for 2 hours I need to come in and rest
for 2 hours. I am happy it has been cool, the heat makes me fade out so fast. By
the way on August 17, 1998 I will be in Sitka, Alaska fishing for 200 pound
halibut and silver salmon.
I went to the doctor today for my one year anniversary visit after my PSCT. I
had an MRI to which they found that I have Avascular Necrosis in my left hip and
femur along with a new fracture of L5-Lumbar. I am taking Prednisone and
receiving Aredia twice a month. The best news was that the marrow showed no
evidence of myeloma. The bloodwork is improving each month. The Bence Jones
shows no M-protein.
My 50th birthday is coming July 26th, 1998, and I would like to invite any people
from the LA area, I live in Monrovia, to come over and chat.
September 2000: So
many feelings have past in these last four years it has been hard to keep up
with them. It is like being glued
to the fastest, most scary roller coaster ever created and it never stops. August of '96 pulling weeds in my garden, then radiation, and
chemotherapy, a Stem Cell Transplant and retirement at 48.
have come back to around 60% of what I was prior to Myeloma entering my life. Myeloma ate my second cervical vertebrae and I have limited movement and
severe restrictions from it. I also
have to wear a brace or soft collar 24 hours a day until I see the pearly gates. Multiple compression fractures to my back and the onset of Avascular
Necrosis in both hips make me feel like I am 90 years old. The only medications that I am on now are 90 mg. of Aredia once a month
and a 25 ug/h Duragesic Patch taken every 48 hours.
with the mental roller coaster of emotions has been one of my hardest struggles.
could deal with the positive attitude to fight this horrible beast. The more I read and the more I talked to the doctors the better I felt
and the quicker I recovered. I have
issues dealing with not being in control when and if I ever come out of
remission and being retired.
am very glad to be in remission for over three years now. Because it took so long to diagnose me the first time, I am very gun shy
about having a Bence Jones 24-hour urine test done every three months. Every
time I see my Myeloma Specialist at UCLA or Cedars, I have this knot
in my stomach until I get the results back. I also get this on every anniversary of my PSCT. Sometimes I think it is not good to know the averages on remissions.
is a battle with my ego to be forced into retirement at 48 when I felt that I
had at least 10 more years to gain financial freedom. Being home alone is so very strange for someone who was used
to being around people. The
disabilities to my neck, back, hips and even hands make employment doubtful and
even volunteering limited. Gaining
back a self worth is a constant struggle.
drive away the boredom, my wife and I have visited Baja California, Alaska,
Washington, New York, Las Vegas, and San Francisco. We also traveled with our daughter to Ireland, London, and
four things that I would recommend that all Myeloma patients and caregivers do
a Patient/Family Seminar sponsored by the IMF
stop reading and finding information about different treatments and
the Myeloma support group closest to you with your significant other
up for the Myeloma Listserver, especially for the newly diagnosed