Dowagiac, MI; email@example.com
1958 / Class of 2002 / Type: IgG; Autologous SCT / Updated: 2/06
I grew up in Flint, Michigan. It's a town full of automobile factories. We lived less than a mile from the Chevrolet plant for 20 years. I moved to southeast Michigan (Woodhaven, Flat Rock, Monroe), then over to the southwest side (Dowagiac) about 8 years ago. I was active in sports and music in school, and continued the sports quite extensively for the first 10 years out of high school. I worked at the University of Michigan for 9 years, and managed a Domino's Pizza for 11 years. I went back to school to get my teaching certification and started teaching Special Education around 1994. Once I left Flint, I lived in small, rural towns. I moved to Dowagiac, Michigan to teach school in 1996. There is a lot of farming in this area. It's very peaceful and I love it.
I was pretty healthy while growing up. As an adult I had a surgery for carpal tunnel, deQuervains, a lumpectomy from my breast (it was benign), and a stomach surgery (summer of 1999). I recovered from each surgery quite fast and had no lingering effects.
I got a summer cold just before school started in 2001. I couldn't shake it and coughed constantly. In October I was having rib pain. I thought it was from coughing so much. I went to the doctor and he thought it might be pneumonia. He ran some blood work. My sed rate was over 100 (the normal was around 20, I think). He ran some tests to see if I might have rheumatoid arthritis or lupus... all came back negative. From October until December I continued coughing off and on... more on than off. When I went back to the doctor to get a refill on a prescription, he re-ran the blood work. My sed rate was even higher and there was protein in my blood. He sent me to our local Oncologist.
My Oncologist did a bone marrow aspiration/biopsy that very first day (January 6, 2002). A week later she told me I had MM. I started on VAD immediately and tolerated it very well. I continued to teach and used a portable IV pump to administer the VAD. The VAD was hooked up on Monday and unhooked on Friday. I'd have 2 weeks off then started it over again. I had 4 rounds of it. I was tired for a few days after the chemotherapy but never got sick. I started Aredia, then changed to Zometa, and got monthly treatments of that.
In February I had a consultation at the University of Michigan for a stem cell transplant. They told me that I was in late stage II or early stage III. It was IgG. I was shocked because I felt so good and didn't feel like I had any symptoms (other than the cold I couldn't shake and fatigue). They said I didn't have the MM two years before when I had the stomach surgery or it would have shown up in the lab work before that surgery. I was a bit scared because I had read that most people can have MM 10 years or more before even knowing they had it. I had it less than 2 years and was already at early Stage III.
Although all 3 of my brothers proved to be good donors for me, the doctor decided to do an autologous transplant first. He said we needed to buy some time so they could improve on the allogeneic transplant (improve the survival rate). I had the autologous transplant in June 2002 and it wasn't too bad. Before the transplant I was on a clinical trial and took a medication that would keep the mouth sores away. It worked!! I pretty much slept through the two weeks in the hospital and other than fatigue, I don't remember much about it. I developed 2 blood infections and was on Vancomycin while in the hospital. I was allergic to it so was taking Benadryl to offset that. I went home from the hospital with Vancomycin and my mom learned how to be a nurse in a very short time!
By September the doctors at the University of Michigan told me to go out and live my life. They were hoping I'd have 5 years before I'd see the MM again. They explained that 20 percent of the people relapse in the first year, 20 percent in the second year... all the way to the 5th year when nearly everyone has relapsed. Since my body handled the chemo and transplant so well they were hoping I'd be in that last group.
I am doing pretty good although I have started to "ache" and feel stiff. I don't know if that is from the MM or not. My oncologist just ordered another metastatic bone survey to see if she can see if there is any bone involvement. I am also going to have my "first year anniversary" bone marrow aspiration and I'm actual looking forward to it because I want to see what percentage my plasma cells are at this point.
I have found that this part is the hardest for me. They tell me to go out and live my life, but I find it hard with the MM hanging over my head. When I was in treatment, I didn't have to think. I did what they said and made it through. I have forgotten how to "live" without cancer being my main focus. I am much more emotional about things now than I was when I was going through all of it. I panic at my aches and pains, and I worry that the cancer is back. I have done a lot of reading and found that these feelings and emotions are very common in cancer patients.
I am working with several other local cancer patients and we are forming a cancer support group. Talking to people who understand... people who have been there... helps tremendously. I am hoping that soon I will be able to put the MM "on the shelf" and move on. My first year anniversary of the STC is next month and I'm hoping that I'll find out that my aches and pains are just that...aches and pains. I'll begin to realize that I don't have to panic about that kind of stuff. :)
A lot of good has come from this. My family is much closer. I found that I am surrounded by more friends than I can count. And my students and I learned a valuable lesson as we went through this together. I also found out that my head looks pretty good with no hair. :)
I'm proud that I'm a survivor.
August 2005: It has been quite a while since I last wrote. I am doing pretty good with my MM. When I passed that one year anniversary that I mentioned in my original post, I found that I didn't think about MM every day. I was able to "put it on the shelf" at times. Now I find that I'll go several days without thinking about it at all.
I have learned to stay calm when I feel an ache or pain, although it crosses my mind that 'this might be it'. I haven't had to begin any of the MM protocols yet. I am on Aredia monthly, and I take other meds only when needed (antibiotics, etc.).
Perhaps the worst thing that has happened, is that I've had severe low back pain on three occasions in the past five months. The first time it hit, I woke up and could hardly walk. Getting dressed by myself was near impossible. I went to see my oncologist thinking it might be a compression. She did an MRI and it showed a few small spots of something, "probably MM". I was put on Vicodin XS and a muscle relaxer to help me through the days. Two days later, I woke up feeling fine! This back pain returned two more times, each time hitting suddenly with no warning, and leaving just as suddenly. Each time I woke up with it and it would last 2-3 days. Each time it disappeared and I was left feeling like I never had any pain. My oncologist said that we know this stuff is going to happen, that the MM is going to pop up, and we'll treat what we need to. Since the back isn't a constant problem and doesn't keep me down, we aren't treating it right now.
My oncologist reminds me that no matter how well I feel, I still have MM and that I'm not in remission because there is no remission with MM. So I must just be one of the lucky ones. I know the time will come when I'll have more symptoms and I'll have to start on some of the protocols, but until then I'm going to enjoy life as much as I can.
I admit MM controls my life to an extent. The dentist suggested that I get braces and my first thought was that I didn't have enough time to enjoy any benefits the braces could give me so why spend the money on them. I have also made a few decisions based on the fact that I won't live forever with the MM (I take the shorter insurance on appliances and if I get a guarantee of 10 years on something, like paint or roofing, I figure that will cover me).
Am I giving up? No. I like to think that I am being realistic. I read where someone with MM once said, "I'm going to live, just not as long as you." Me, too.
February 2006: My IgG numbers have been going up since May 2005. In May, they were 952; January they were up to 1420. Although these are in the "normal range", they aren't normal cells (as my Oncologist says!). With the steady increase in numbers my Oncologist consulted with my transplant doctor about beginning treatment.
The IgG didn't go up between January and February 2006, so it was decided to hold off treatment for another month at least. My doctor explained that there are only so many treatments out there for MM and each one only lasts so long. The sooner we start treatment, the sooner it will fail. So the goal is to hold off on beginning treatment until we feel that it can't be held off any longer. She is checking my IgG count monthly and we'll make a decision based on that. It still hasn't been decided if I'll do Velcade or Revlimid, or even another transplant. Everything is in a holding pattern right now.
I am feeling pretty good so I'm not complaining. Life goes on and I'm still a cancer survivor!
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