Owens Cross Road, AL; firstname.lastname@example.org
1938 / Class of 1998 / Type IgA Kappa / Syngeneic (twin) SCT, remission / Updated: 3/11
I was diagnosed with Multiple Myeloma in August 1998, after a routine blood test for intended surgery on my shoulder for calcium deposits. The blood test showed abnormal protein counts.
I was sent to an oncologist, who did a bone marrow biopsy and aspiration. It showed 25% plasma cells and confirmed that I had multiple Myeloma. I have IgA Kappa light chain. She sent me to a bone marrow transplant doctor because she felt I was a good candidate for a transplant, since I had an identical twin sister and was in otherwise good health. I went to Dr. Craig Rosenfeld in Dallas, TX, who was the head of the transplant department at Medical City. He did another bone marrow biopsy, then did extensive testing, including DNA on me and my twin in preparation for a syngeneic stem cell transplant. I had 4 rounds of VAD, then the Melphalan and Dex, preparing for the transplant. The VAD did not do much in the way of changing my counts, but the Melphalan and Dex did.
I had a syngeneic stem cell transplant using my twin's stem cells on December 24, 1998. Two months later I was in complete remission and have remained there since. I did suffer mild graft vs host of the stomach, duodenum and skin for 18 months after the transplant and am praying that my twin's stem cells killed off any lurking Myeloma cells! December 2003 will mark 5 years remission for me.
I grew up in a small town in Oneida, New York. Besides my twin, I have an older sister and a younger brother. After high school I worked at an air force base in the IBM machine department. When I was in my early 30's, I worked as a secretary in a plastics plant and had some exposure to the plastic fumes when they opened the door to the plant and when I had to go fetch the foreman.
I think that more likely that the toxic chemical Diazanon that I used to spray fleas from our dog pen in the early 1990's may have gotten into my system after the wind blew it back on me and may have caused a cell to mutate. I know it made my heart race for a short period of time after that.
An interesting thing is that my twin suffered from air-born allergies and I had skin allergies before the transplant. I seem to have acquired her air-born allergies, but mine are worse than hers! Could it be that I would have gotten them anyhow, or do I have them now because I have her immune system? Good question.
I have had no treatment for the past year, not even Aredia. I have a new oncologist now, Dr. William Berryman, in Dallas, TX, and he feels I should be on Aredia. At my visit next month I will start it again. I also suffer from reflux disease and had the Stretta procedure done, which did absolutely no good. I take Nexium, the little purple pill! I also take calcium supplements, when I remember to take them, because I have some osteoporosis. I don't forget the Nexium often!
I have been living in Mabank, TX, married to Dr. Lon Newlin, and have 3 children and 5 grandchildren.
Having had Myeloma has changed me a lot. Having faced the thought that I might die a lot younger than I would like, I see things in a different light. Having a terminal disease has opened my eyes to the beauty of the world around me and I count each precious day as a blessing from God. I notice everything now, no longer taking things for granted. I find myself watching children play, listening to the birds chirping as I walk in the park, seeing a beautiful sunset, watching cloud formations and just plain enjoying life.
Life is so much more precious to me and I try to make each day a good day for me. I keep a positive attitude. I have grown so much closer to God and to Jesus since reading the Left Behind series and rarely miss a Sunday in church. I had faith before Myeloma, but my faith has definitely increased and I am no longer afraid to die.
I enjoy many activities, keeping myself doing fun things like playing my flute in the community band, singing in the church choir, playing in the bell choir, and singing with the Avanti singers. I also play in the Baptist Church orchestra (I'm a Methodist) for their annual Christmas performance. This past summer I took pictures every day of the kids in various activities at vacation bible school and that was great fun! I work part-time as a real estate assistant, which is often fun (but sometimes stressful), and I design real estate flyers and take pictures for other realtors.
August, 2007: I'm still in complete remission! That's 9 years in December that I've been in remission. I am now living in Owens Cross Road, Alabama. I'm about to be a great-grandmother in December, oh my gosh, am I that old?
Under activities, take out singing with the Avanti singers, and playing bells in the bell choir. I now play flute in the Huntsville Concert Band, the Twickingham Winds and at church. I've recently taken up making jewelry and hope to market and sell on the internet. I also have a new puppy, who is 7 weeks old and just barked for the first time today (and only once). So that makes three Yorkie's and 2 Himalayan cats I have. I no longer am a part-time real estate agent. I'm retired.
My twin sister, who was my syngeneic stem cell donor, came to live with us a year ago and it's working out really well.
February, 2011: I am still in complete remission since December 1998, when I had my syngeneic stem cell transplant. I only get yearly follow up visits. I'm so blessed to have had an identical twin and for the transplant to have had such success.
March, 2011: Last year I had Achilles tendon surgery, and I'm still having some problems with pain when I'm on my feet too long. I have developed a lot of scar tissue and they may have to go in and remove it, put a sheath in and wind the tendons around it so they can't develop scar tissue. I don't quite know how this works and I hope I don't have to find out. I am working part-time at KFC/Taco Bell just to have spending money. It's fun, but hard on my feet!
One of my Himalayan cats, Fridi, died about a year ago. We now have a 5 month old female kitten, who acts a little crazy, tearing around the house. But she has adjusted to the three Yorkies. Kozi, the remaining Himalayan, pays no attention to her at all. He is the whole reason we got another cat. My husband thought Kozi was lonely without Fridi. Not true. So now we have 3 Yorkies, two cats, and 2 cats that belong to my son, which stay in his bedroom. They are older cats and don't seem to mind.
I am due to go back to the oncologist, Dr. Waples, in July after I have a bone density test and a mammogram. I had a mammogram last year, and had to have two biopsies, which turned out not to be cancer, but I need yearly follow up. It had been 6 years since I had a mammogram, shame on me!
My advice to anyone with a terminal disease is to enjoy each day that God gives you and do fun things! Try not to dwell on the negative aspects of this disease and take each day as a gift. And lastly, fight, fight, fight this beast and pray each night that someone discovers a cure!
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