Spring 2011: My primary care physician (PCP) found elevated creatinine and protein in my urine. I was feeling fine at this “well check-up ” until these test results. Anxiety rose. I felt frantic. The nephrologist believed that I had interstitial nephritis, an inflammation of the kidneys. It resolved somewhat by itself but did not go away. Whew! August 2011: My PCP wisely ordered an SPEP…and bingo! I was diagnosed with MGUS, the precursor of multiple myeloma. I was referred to an excellent, local hematologist/oncologist.
Fall 2011: Lots of tests including the bone marrow biopsy, showing 33% plasma cells. I brought my test results to a myeloma specialist at MD Anderson. I did not have any of the “CRAB criteria” or any deletions. Should I be treated? He ordered a test for amyloidosis, which turned out positive. I did not or do not have any signs of amyloidosis. I had active multiple myeloma. I began induction chemotherapy immediately.
With the Revlimid, dexamethasone, velcade treatment, I reached complete remission in 3-1/2 months. I collected and froze my stem cells for possible future use. Happily glowing and feeling well, I stayed in remission for about 4 years using maintenance chemotherapy. Spring 2016: My blood markers started to rise slowly and I reconsidered autogolous stem cell transplant (SCT).
Now I am a bit over one week away from SCT at MD Anderson. I feel excited and anxious. I am at peace with my decision and my husband is a wonderful caregiver. My specialist and my transplant team at MD Anderson are excellent and responsive to patients. I feel ready.
Many gifts have emerged on my myeloma journey. The love from my family and friends is overwhelming and joyful. I became an active member of the IMF (International Myeloma Foundation) That is my second family! With their help, I launched the first multiple myeloma support group in New Mexico. Starting with about 10 members, more than 30 people attend most of our monthly meetings.
My co-leader, John, is a wonderful asset for our group. Being a physician himself, he knows many answers. And we always have many questions. The people in my support group are caring, sharing and loving. They are truly exceptional and courageous survivors – another gift.
I have attended several IMF Patient and Family seminars, Leaders Summit meetings and Teleconferences. All of these have increased my knowledge and awareness about MM. As I give my time to these various pursuits, I realize that the gifts I receive are too numerous to count!
And finally the gift of today shines forth. I am living a full life with my spouse, my nearby children and grandchildren, my volunteer work and facilitating a few teacher workshops along the way. I feel blessed. As I go into this transplant, I know that it will be hard work. And I am confident that there will be more emergent gifts in my life.
— Susan B., Santa Fe, NM, USA