Smithtown, L.I., NY; email@example.com
1949 / Class of '95 / Bone lesions / Rad, Chemo, SCT / Remission / Updated: 5/12
I just turned 58 years old. I hate saying that, but I guess I shouldn't, being I'm living on borrowed time. I'm the patient. I was diagnosed with "Stage III" MM on 3/13/95. I live in Smithtown, NY (Long Island). I was diagnosed when I was just 46 years old. I was told I did not fit the typical MM profile, that is: late 50's, early 60's, black, male. I was too young, white and female. I do not know the exact type of MM I had. When I was diagnosed, I was heavily medicated (on morphine) and do not know some of these details. I don't think I've ever been told this detail or asked. But, will ask my oncologist on my next visit.
In February of 1995, I experienced severe lower back problems. I had fallen a few days before and mistakenly believed that the fall was somehow connected to the pain. I went to an orthopedist who did a plane x ray, which was negative for fracture. Than, my boyfriend (at the time) recommended a chiropractor. The chiropractor assessed my condition as severe lumbar back spasm. He did some spinal manipulations and prescribed bed rest and hot baths. But, the pain just became worse. Several days later, after staying out of work, in bed, and feeling no better, I decided that perhaps going to Florida (to my parents home) might help the situation, as it was an extremely cold winter in New York. Several nights prior to leaving for Florida, I found myself on the floor, screaming in agony from an indescribable pain in my right femur area, which caused me to collapse. I was coming out of the shower and my boyfriend was downstairs and could not hear me.
Finally, after crawling out to the staircase, he heard me and came to my aid. I took some pain medication, but the pain was still there and unbearable. I left for Florida two days later. I thought the warm weather and sitting in my parents Jacuzzi would do the trick. I guess I was just deluding myself. I am a bodily injury insurance claims adjuster by trade and in my mind, the worst case scenario for me, would be that I had suffered a herniated disc in my lower spine and would need surgery. Little did I know that would be a GOOD thing, as opposed to what I soon faced. Long story short, getting no better, my father arranged for an appointment with an orthopedist who was a friend of the family. By the next weekend, I had undergone a lumbar MRI and a bone scan. By Friday evening, I was told, on the phone, that the film "did not look good". I was in shock after I was asked if there was cancer in my family---there was none (on both sides). But cancer---me--at 46---bone cancer!!!!! It could not be true, but it was.
I was put on the next plane back to Long Island (in a wheel chair) and had an immediate biopsy of my lumbar spine and was diagnosed with MM. I was told this was a blood disorder, not a bone cancer. However, the lesions in my right femur were pretty far advanced and I was put on crutches and admitted to North Shore Hospital where I underwent a titanium rod insertion to strengthen the bone and save my leg. I had a morphine pump inserted at this time and things are rather hazy surrounding this period of time. I was also given several radiation treatments to my lumbar spine and steroid injections to shrink the swelling to my spinal cord.
Additionally, I was given interferon by a visiting nurse and prepared for chemotherapy. I received the first of 6 rounds of chemo from an oncologist in Long island, connected to North Shore University Hospital. I do not know what type of chemo I was given. I completed my chemotherapy in Florida, as my parents were elderly and could not tolerate the New York winter. By November, I was in complete remission and my blood counts were normal and my bone biopsy negative for Myeloma, my urine test was normal. At this point, I was considered a prime candidate for a stem cell transplant. In September 1996, I was given more chemotherapy (my hair finally totally fell out) and I was admitted to the hospital (University of Miami, Sylvester Cancer Center, Bone Marrow Unit) for the transplantation of my stem cells. Incidentally, I was totally wheel chair bound following the leg surgery and had six months of intense physical therapy to strengthen my muscles so I could learn to walk again. I have never walked normally since, and to this day, I have right leg parathesis and bilateral peripheral neuropathy, much worse on the right side and total numbness of my right foot, although, unless you watch me closely, you might not notice the slight limp I have on my right side. I also can lose my balance if I'm not wearing "sensible" shoes (which I do very often.)
I have been in complete remission since September of 1995. Following the transplant, I received monthly infusions of Aredia for several years. For the past four years, I have been getting infusions of Zometa, instead of Aredia. Recently, being that my blood counts are so normal, I have been receiving the infusions bi monthly.
I currently work full time (more than) at Geico Insurance Company as a bodily injury claims adjuster. I was out of work for about 7 years. It was very hard for me to go back to work, but financially, I really have no choice, having used up all my savings and future retirement fund and sold my condominium. No one could live on Social Security Disability payments alone. I returned to Long Island three years ago, following the death of my father. My mother has also since passed. I presently live with the same boyfriend I was with when I was diagnosed. We had drifted apart, he married someone else, but somehow we found each other again. We are planning to be married in the near future.
I know there is no cure for MM, but my oncologist feels I am a "cure" as far as he is concerned, as I am twelve years into a remission, literally a gift of extra life. When I was diagnosed, the treating MD at the time told my father that my life expectancy was 2-5 years at most. So, I guess, even though I think I got a really bad break, that I'm pretty lucky. Although I lost all my tangible real property, I do still have the one important thing--life.
I pray that if I relapse, there will be some new treatments and protocols that can help me stay in remission, at least for a while.
This is the first time I have reached out to any survivor or to the cancer community. I usually try not to think of myself as a cancer survivor or "victim". I never disclose this to anyone outside of my close family---I don't want pity and don't want to be thought of as "dying". I certainly don't want a pity party.
May, 2012: I submitted my last update as Sheryl Frank in 2007. At that time I was 12 years in remission. Today is 5/19/12 so that means I'm 17 years into my remission from MM. I hope that hearing this is uplifting for anyone who might be reading this. I am now married (to the fiancé I discussed in my original posting), still living in Smithtown, NY and still working as a claims examiner. I have lived to see a grandchild (girl).
Since my last posting, I have also had a "secondary cancer". I am told, by many, many doctors (because I ask all the time) that this second cancer is NOT related to the first. The second cancer was discovered right before I was married in 2007, purely accidently. This cancer was in my right salivary gland. It was caught relatively early and the malignancy was in the margins of the tumor, very localized. It was removed and as a precaution I had radiation to the area. That's the only thing regret about any of the decisions made about my cancer treatment and it has caused more problems for me than anything else connected either to the MM or anything else, also Zometa seems to have some serious side effects as well. Since, I was unfortunate enough to take Zometa AND have radiation to my right jaw and neck I have been left with serious dental problems. And, this has resulted in the bone in my gums becoming "necrotic" I'm not a candidate for implants. I pray that I can get along with what I have for now. I spent a great deal of money on implants when I was first finished with my MM treatment. But, I guess my body outlasted my teeth. When you are fighting for your life you aren't thinking that far in advance about whether you will have dental side effects, you just want to live.
I have 17 years since MM came into my life, because of all of the wonderful care I received when I was first diagnosed. I do not know why I have survived so long and others have not. But, I'm hopeful that the MMRF will be instrumental in funding more research so that others can get the same benefit of prolonged life as I have had. I'm posting a current photo of myself and my husband.
I pray for everyone and wish the best to all newly diagnosed and their care givers. There is hope and a light at the end of the tunnel.
-- Sheryl Pearl
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