Debio's Journey with Multiple Myeloma

I have always been an active person; teaching high school, working 2 other jobs to pay the bills, single mom. When I started having back pain, I chalked it up to pulling a muscle, the usual aches and pains. I put all my effort into my three sons. Their dad had not been a good parent whatsoever. All they had was me and I made sure that they did ever go without; if I could. What I didn't realize, that by neglecting me I almost deprived them of the only adult they could count on: ME! On April 1, 2010, I walked into the emergency room. It was spring break and I couldn't take the pain anymore. Within 24 hours I had been put into a medically induced coma, helicoptered to a bigger hospital and my three sons were told not to expect me to survive. I had stage 4 multiple myeloma; since my research shows only 3 stages, I must have been very close to death. My kidneys were shutting down. I was put on a respirator and stayed like that for three months. Most of the doctors on my team saw no value in treating me. They held out no hope. My oldest son spoke to the oncologist on the team and asked him to try, try anything. This one doctor was willing to take the risk. He started me on a round of chemo. At first my pressure bottomed out, my heart race, but slowly it began to work. My kidneys began to function, my numbers stabilized. Three months later I was weined of the respirator and moved to a nursing home for 5 1/2 months so I could learn how to walk again. The school I worked at was amazing. They fed my children, helped them maintain our home, do the laundry, pay the bills. The prayer and the power of their support as well as my Dr. has helped me livethrough a terminal diagnosis. I am back at school a few days a week, struggling to pay the bills (as usual) but I am alive to love my children, help support the community that did so much for me. And there to help any of you who need a friend.

My autologous stem cell transplant took place in March of 2011. Had a slight adverse reaction to the proceedure to harvest my stem cells; dizziness, nausea, exhaustion. The chemo that they had to give me to prepare my body for the transplant was horrible. Extreme nausea, vomiting frequently. No appetite. It was all worth it. The transplant has been extremely successful. There is less than 1% of the myeloma markers in my bloodstream still, a year and a half later.

I have been told for over a year now that I had less than 1% of myeloma showing in my blood work. I recently went to see my transplant doctor who pulled up my blood test results and told me that I show no myeloma what so ever in my blood stream. YEAH! I am a survivor but I am still a Multiple Myeloma patient and I will always be a MM patient. I asked my oncologist why I am still on a maintenance dose of my revlamid. He told me that test results show a better long term prognosis for MM with patients who are kept on a very low dose. He added that it is important to stay on the cutting edge of myeloma research in order to stay ahead of this cancer. I am posting this because I have read a number of your posts that have mentioned being taken off your meds completely. PLEASE ask questions of your oncologists. Although the meds have side effects I am only on 10 mg and I am having none. Being off meds might seem like a time to celebrate, but if it harms you in the long run, it isn't worth it.

I noticed something when I get my What Next updates. If it is a fellow MM patient, I can relate, but if it is a caretaker, I can't. I delete it right away. It is almost as if I resent it. But I don't. I am just jealous I guess; and it hurts. I have had no one to really help me since my initial hospitalization and nursing home stay. You see, I'm a single mom. I go through it alone and although I have lots of friends, I can not bring myself to ask them to go to my infusion appts. or Drs appts. with me. They have their own lives, their own children, their own responsibilities. But when I am there and I see others having someone to keep them company, get them a drink etc, it makes me feel even more alone. Does anyone else feel that way sometimes?