Palm Bay, Florida
1943 / Class of 1992 / Bone and organ involvement / Chemo / Updated: 7/04
I have been married since 1965 to Lawrence Maxwell Monari, Ph.D. I have one daughter, Julie Ann Monari, born 1975, and two sons, Lawrence Scott, born 1971 and Clinton James, born 1972. I have one grandson, Christopher James Monari, born 1995, and 2 granddaughters, Amberly Ann Monari, born 1998 and Jasemine Denise Monari, born 2000.
January 11, 2004: My story unfolds in the summer of 1992. I had gone to a local chiropractor for about a year. The summer of 1992 I developed the same back pain after bowling. Workup including a trip to the orthopedist and Bone Scan revealed I had a serious problem which could be Multiple Myeloma for which I was referred to an endocrinologist. After running more tests the doctor felt an urgency to see a hematologist. He didn't say I had cancer at first but after a Bone Marrow Aspirate my diagnosis was officially confirmed to be Multiple Myeloma on November 13, 1992. Arrangements were made for me to go the week of Thanksgiving for a second opinion. It was reconfirmed with another Bone Marrow Aspirate and 24 hour urine at a university in the west. To that date I had lost 6 inches of height because my vertebra had collapsed in T8-T10. I also had some lumbosacral involvement. It was recommended to me that I have radiation to the vertebra and take oral chemotherapy. As I was a medical transcriptionist at the time, I thought wow, what a way to cure cancer and be a career girl.
For 3 months until February 19th, 1992 I followed the above mentioned regimen and then since I didn't think I was improving much I started on Adriamycin and Vincristine entering the local medical center about one week a month for almost a year ending in January of 1993. After my first two treatments, a monkey wrench was upon me. I had a pulmonary embolism March 26th, 1993. After a brief interlude, I resumed chemotherapy. I had pneumonia a couple of times as is sometimes due to the white count. Of course I was a social butterfly and between hospital trips I didn't want to miss an activity. My family was most supportive of me with chores.
For 7 years I remained in remission. April of 1999 I had some left knee discomfort for which I was treated with radiation. I went on IV Aredia about June. For the next two years I was fine. April 13th, I tripped in my Dad's carport moments after bringing him home after he spent almost 3 months in a nursing home because an ankle injury hadn't healed. I broke my right hip. I was taken to the same medical center where they had my records. April 14th, I had surgery and also had them check out for Multiple Myeloma. Sure enough it was present in the right upper leg and hip. Towards the ends of my first week in rehab another test was done which confirmed the presence of Multiple Myeloma in my left upper leg and hip. I went home for the weekend to be with family and then the following Tuesday, I had the other leg treated with surgery. Subsequently, I was in Rehab for three weeks. I started with radiation before I returned home. After completing the radiation, I started on oral chemotherapy. I developed anemia and was treated with a regimen of Procrit and I finally went back in remission. Praise the Lord.
Almost 2 1/2 years later I spent a week in the hospital with pneumonia and also had another pathological fracture to T7. Prior to this escapade, I was switched about 1 1/2 years ago from IV Aredia to IV Zometa. I left the hospital on August 22. 2003 on oxygen. I was told the oxygen would help when I had a flareup of bronchial asthma. I went on Advair Inhaler then. I once again developed anemia and my doctor began treating me with Procrit. By September 5th, I thought I was doing so well that I weaned myself off the oxygen by this time. By mid October I saw my pulmonologist. He told me to use the oxygen 16 hours at least out of 24 hours. I was slowly losing energy and feeling fatigued. The first week of November I saw my doctor of internal medicine who assured me I had no heart problem other than a previously diagnosed enlarged heart with mitral valve stenosis and a heart murmur found on an echocardiogram.
I saw my oncologist on Thursday, November 20th and I got my Procrit for anemia and IV Zometa. My energy was really depleted. Friday night, November 21st, my family and I were going to go out for dinner. We had a change in last minute plans and decided not to go. I was really energy depleted and managed to walk from the kitchen to the family room and my husband attempted to help me onto the sofa when I collapsed. My husband told our son to call 911 and I vaguely remember the paramedics as I was losing it all. Instead of going to the medical center where my doctors and records were the paramedics decided to take me to the local hospital which was very close to our house to stabilize and then transfer me to the medical center. With lots of prayer, support from family and friends, I only was on life support until the Tuesday before Thanksgiving. It was an exciting moment to get off life support and leave CCU and transfer to a regular floor. I enjoyed a delicious Thanksgiving Dinner in the lounge along with my family. It was indeed a celebration of Thanksgiving to know that God wanted me to continue being a cancer survivor. Tests started the day after Thanksgiving. I had a CT scan of the lungs and a thoracentesis. I also had an ultrasound of the abdomen which revealed normal kidneys and spleen but spots on the liver. A CT biopsy revealed I had Multiple Myeloma cells in the liver. I had a colonoscopy which revealed no colon cancer. Both my oncologist and gastroenterologist were very optimistic with the treatment of the Multiple Myeloma because it responds well to chemotherapy. In addition to the flare-up of the Multiple Myeloma, I was diagnosed at the onset of this hospital admission to have pleural effusion and congestive heart failure. I was discharged on December 9th and had a happy home coming. I have already had one round of oral chemotherapy, Alkeran and Prednisone. Hopefully this Friday I can start back on my second round of oral chemotherapy. It had to be postponed because I had a bout with asthmatic bronchitis. Yesterday I saw my pulmonologist and he put me back on Advair along with my Albuterol. I also finished 7 days of Biaxin antibiotics. I am still getting Procrit for my anemia. I have lab work once a week, see the oncologist frequently who informs me when to start the chemotherapy and also get IV Zometa. For my enlarged heart I take Lasix (Furesemide) and K-lyte or potassium.
July, 2004: After six months of oral chemo, one lesion is completely gone and an MRI on June 2 revealed that the second is much smaller. My doctor is going to try taking me off the chemo and putting me on thalidomide, if I can get some kind of financial help.
Ever since I came home my family and extended family have been very supportive of me. My husband, Larry and I will be married 39 years on June 12th. We have 3 children (ages as of early 2004): Scott (33) who lives with us, Julie Ann (29) who temporarily lives with us with her 3 children (our grandchildren), Christopher James (9), Amberly Ann (6) and Jasemine Denise (4), and Clinton James (32) who lives in Gainesville. My 90-year-old Dad lives by himself in nearby Barefoot Bay, FL.
I hope that my story inspires anyone who has been diagnosed with Multiple Myeloma to have hope for survival. Remember this saying: You are living with cancer and not dying of cancer. Keep multiplying the endorphins for good belly laughs. Also believe in the power of prayer and the Almighty God, join a local support group and read the IMF Journal too.
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