Richmond, VA; email@example.com
1961 / Class of '01 / Type: IgG Kappa / VAD, HD Chemo, SCT, Remission / Updated: 10/02
I'm submitting my story because when I was going through the throes of learning that I had this disease, the stories of other survivors along with my faith is what got me through. I hope I can be of help to someone who reads my story and let them know that there is a light at the end of the tunnel.
I was diagnosed in May 2001 with Multiple Myeloma. I kept having a swelling sensation in the left side of my neck and ear area, I had nose bleeds and I was always tired. I knew something was wrong but I didn't think it was serious. I thought perhaps I had an infection in my throat or ear. My primary care physician did an exam and could not find anything remarkable. He did a couple of blood tests and called me one evening @10:00 p.m. Right away, I knew something was wrong. He confirmed it by saying that he wanted me to see a hematologist/oncologist ASAP. The next day, the oncologist advised me that the blood tests pointed to multiple Myeloma and he wanted to do a bone marrow biopsy (the first of many to come) to be certain. Ultimately, the doctor confirmed that I had early stage multiple Myeloma with a quantitative IGG of 4120, 17% plasma cells in my marrow and no bone lesions. He commented that I was the youngest patient he ever treated with this type of cancer. I was devastated! I could not believe that I had cancer. I went from thinking I had an ear infection to being told I have cancer. Whoa! I cried, I cried, and I cried. All I kept thinking of was the things I haven't done yet. I kept saying to God "but I have so much I still want to do... I don't want to die now".
Within weeks, the doctors were talking about prepping me for a stem cell transplant at the Medical College of Virginia. I read as much as I could about it, got literature from the International Myeloma Foundation, asked as many questions as I could, spoke to people who have gone through transplants, joined a support group and just continued to learn as much about multiple Myeloma and stem cell transplants as possible. I went to the University of Virginia Health Sciences Hospital in Charlottesville, Virginia for a second opinion with a Dr who had experience with treating Myeloma patients. He confirmed the opinion of the other doctors that I should have the stem cell transplant and that I should be looking towards getting my disease into remission.
I had 4 rounds of VAD (Vincristine, adriamycin and Decadron), infusions as an inpatient. The first time, they put in a port-a-catheter on the left side of my chest to administer the chemo but within days, my face, neck and arm started swelling up and became very painful. They determined, through CAT scan testing, that I had developed deep venous thrombosis in my left subclavian. I had to be hospitalized again and placed on a heparin drip for 5-7 days. After recovering from that, I had to go back in for chemo. This time, they put a temporary catheter in my right arm and administered chemo. I went home and wound up back in the hospital with blood clots in my right arm. Another 5 days of heparin in the hospital. I was placed on Coumadin and sent home. Back for more chemo. This time, they put the catheter in my right jugular vein (neck) and administered chemo. Finally, no more clotting. I got through 4 rounds of VAD and 1 round of DCEP. By October 2001, my IGG was down to 1756 and my B2M was 1.0. I was ready for the stem cell transplant.
In December 2001, the SCT was done at the Medical College of Virginia and was coordinated by Dr. James McCarty, Director of the Bone Marrow Transplant Unit at MCV and his colleague, Dr. Chung. Although the SCT was not a pleasant experience, it was not as bad as I had anticipated. I stayed in the hospital for about 21 days. The first few days, they collected my stem cells (by the way, they had to put the catheter in my leg this time), then they administered the high dose chemo (Melphalan and Cytoxan), then gave me back my stem cells. I was totally wiped out. It took all I could do just to move. I lost 20 lbs. Just the smell and sight of food made me want to vomit. I prayed to God. There were nights when I was afraid to go to sleep because I did not think I would wake up. But I kept praying and praying and I started to get better and better gradually. My family (mother and sister and cousins) and friends cam! e to see and was of great inspiration to me. I don't know what I would have done if I did not have my mother and my sister there for me.
Within months, I was somewhat back to feeling like myself. I returned to my full-time employment in February 2002 (after being out for 9 months). It was wonderful to be able to work again. I know that may sound crazy to some people but I enjoy my work and you don't miss what you have until you don't have it any more.
Fast forward to October 2002; my Dr. says I am doing great. My cancer is at stage "zero". The most recent biopsy was normal and my protein levels are normal and they officially classified me as being in remission! Thank God. It has been a rough road but I'm still here and I feel good. To anyone who is going through this, please keep your faith. It's going to be o.k. I'm living proof that our prayers can be answered. There are so many new treatments being tested in clinical trials for Myeloma. I have faith that one day this disease will be curable or at least manageable like diabetes or high blood pressure. My advice to anyone going through this is to read and become knowledgeable about Myeloma and what's going on with your body. Pray and try to be positive. I know it's hard. I have been there. But if I can get through it, with faith sometimes the size of a mustard seed, you can too. ! If there is anyone out there who is going through what I have gone through and need a word of encouragement or if you have a question, I'd be glad to help.
By the way, cancer has been a wake up call for me. Since my diagnosis, I have been up in a hot air balloon over central Virginia; I've been to Niagara Falls on a boat (Maid of the Mist); traveled to the Grand Canyon; I'm becoming a foster parent and plan to spend time next summer on my own boat on the James River; somewhere in there I want to go back to school and get my Masters Degree. There are so many things I want to do and having this "condition" has made me aware that life is precious and you have to have fun and make the best of it and do all of the things you want to do.
I hope that I can be able to update this story from time to time with positive news. God bless.
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