Digna Diana Gonzalez
State College, PA
Diagnosis. Multiple Myeloma. At that moment I knew how a criminal felt when condemned to the death penalty. For more than 2 years I visited a litany of doctors about my deep fatigue and debilitating cramps in my feet and legs and was mis-diagnosed with various diseases; each to be discarded by another doctor. One enlightened rheumatologist suggested that I needed a series of blood tests. The results were alarming and it was he that recommended that I see a hematologist immediately. It was only after 4 failed bone marrow attempts and a final visit to the Mayo Clinic that I received this final diagnosis.
I had been reading about Multiple Myeloma (MM) for quite a while before my Mayo Clinic visit and I knew that in most cases, people within my age group, survival would be from 1 – 3 years and that MM was an incurable blood plasma disease. The diagnosis was MM (type IgG--1920) with 20% plasma cells in the bone marrow. The beta 2 micro-globulin was 4.5.and the M–spike was 1.8 with a low amount of kappa free light chains at 9.57% mg/dL. The hematologist at the Mayo Clinic determined that I was between Stage 2 and Stage 3 (International ratings). A series of other test results predicted that I had a “good prognosis” (whatever that means for a person with MM). The good prognosis was based on a test that revealed that indicated a plasma cell clone with trisomy 3 and tetrasomy 11 which may point to a hyperdiploid clones. Nor I did not have any lesions in my bones, nor was my kidney a “MM” kidney. Good news on that front. After the first initial shock, I began to think of MM as any other type of disease and I decided that being depressed about it would do neither me nor my family any good.
After many discussions to the treatment options, we settled on a 28-day cycle of thalidomide and dexamethasone 40mg. for 5 days a month. Upon return to State College I started this treatment immediately. (By the way, Medicare does not pay for thalidomide treatment and it is very costly.) This regime would be for 12 treatments. I immediately experienced a series of secondary effects: constipation, nephrology in my feet, rashes, sores in my mouths, but tolerable. I continued this treatment because my IgG was going down considerably and the M spike was also decreasing dramatically. In the middle of my second month treatment cycle I began to be disoriented and off balance—I couldn’t drive and my feet and legs began to swell considerably (edema). I could not finish my 3rd month of treatment because I was out of breath, unbalanced, bouts of blood pressure decreasing rapidly, dizzy, edema, etc. During a routine checkup visit with the hematologist I told him my symptoms and he immediately suspected a blood clot. To make a story short---yes, a blood clot and I was diagnosed with pulmonary embolism. I was hospitalized for 11 days and I refused to go to a rehab clinic when discharged; I wanted to go home. My daughter (that lives in South America) came to help me out until I was better. A series of good friends came around with food, flowers, good conversation, and gentle care and a weekly rosary meeting with a good friend. It was very uplifting to see one has caring family and friends.
While in the hospital I came to the realization that nobody could put a date on when I would die. Only God knows that date. So, I decided not to worry about it and live each day as a gift. I began the process of recuperation from the pulmonary embolism and decided that physical therapy would do me good because I was so weak. During this process I contacted a physical therapist who specialized in lymphoedema because my legs, ankles, and feet were still considerably swollen. This treatment has proven to be heaven sent and has helped with my edema and has afforded me with a caring support group which I think is so crucial for cancer survivors.
After recuperating from the pulmonary embolism my hematologist put me on a different protocol: Alkerand 0.15 mg/kg/ days 1-4 and Prednisone 60 mg days 1-4 each month. I completed 10 rounds of this treatment and now I am off chemotherapy because he says I am “stable.” (There is no remission for MM.) Meanwhile, I registered for a MM blog and read many, many stories from patients with MM. I tolerated this treatment quite well. One of the recommendations that have appeared was that cucurmin was very good to help one remain stable. I consulted with my hematologist and he did not oppose the idea. I also consulted with the specialist in the courmadin lab (have to take it for life to avoid blood clots) and there was no objection with him either. So, I will begin taking the cucurmin tablets (500mg.) and will increase every two months until reaching 1,500mg daily.
Meanwhile, I am volunteering in the Cancer Survivor Association. Yes, I am a cancer survivor. Each day that I live I am a cancer survivor.
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