Monrovia, CA; Trtlefrog@aol.com
1948 / Class of '96 / Stage III Kappa LC / Radiation, VAD, PSCT97, Aredia / Deceased
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 condition.
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 flower.
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 anything.
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 tests.
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 the DEX.
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 anyway.
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.
I 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.
Dealing with the mental roller coaster of emotions has been one of my hardest struggles.
I 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.
I 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.
It 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.
To 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 Paris.
The four things that I would recommend that all Myeloma patients and caregivers do are:
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