Myeloma Mondays #24: Katie from Houston, TX

Where were you born and raised?

• Born in Rochester, Minnesota (parents were both on staff at Mayo Clinic) and raised all over the world.

Where do you currently live?

• Houston, Texas

When were you diagnosed and how old were you?

• July 25, 2008 – age 61

Did you know what MM was prior to diagnosis?

• Yes, unfortunately, I did.

Is there anyone else your in family with MM?

• My mother was diagnosed with MM at the the age of 85. It was in the early “smoldering” stage and didn’t slow her down a bit. She visited her oncologist each month for blood/urine work and led her active, amazing life. A year later she was killed instantly in an automobile accident. As terrible as that was, I’m so grateful that she didn’t have to endure even a fraction of what I have gone through.

What led to your diagnosis?

• Kidney failure and broken vertebra and ribs.

How many times were you referred before actually being diagnosed?

• Once

Where have you received treatment?

• M.D. Anderson Cancer Center in Houston.

Explain your treatment history

• 7/2008: Plasmapheresis, Dialysis, started Velcade, Dex, Thalidomide
• 8/2008: Kyphoplasty for fractured T6, T7, T9
• 9/2008 : Scans showed 7 fractured ribs
• 9/2008: Hurricane Ike hit Houston – without electricity for 15 days
• 1/2009: Began testing to see if candidate for ASCT
• 2/2009: Kyphoplasty for fractured T8
• 2/2009: Began Zometa infusion each month
• 3/2009: Apheresis for collection of 15 million stem cells – I was participant in clinical trial in which I received 10 million cells at transplant rather than the standard 5 million cells – thus 15 million needed so I could bank 5 million for future use.
• 4/2009: ASCT – hospitalized at MDA for three and a half weeks.
• 10/2009: Began Revlimid as maintainance therapy – have been on and off a couple of times because of low blood counts.
• 2/2010: Stopped Zometa because of damage to kidneys. My kidney function is always of concern.
• 4/2010: One year out from transplant and things are looking good with exception of impaired kidneys. I receive Procrit when Hemoglobin count drops below 10.

Why did you or your doctor choose a specific treatment?

• I was diagnosed at Stage IIIB with 75% infiltration. I knew I was in a dismal state and wanted aggressive treatment so I could live for awhile. Previous to MM I was in superb health.

What has been the side effects of the different treatments?

• All of the usual suspects - terrible nausea and vomiting (lost 40 pounds), Dex made me crazy, neuropathy in hands and feet (tried acupuncture but didn’t help), constipation, bone pain, hair loss, unrelenting fatigue. I think the single worst incident was the bone pain during the time I was giving myself the injections of Neupogen twice a day for stem cell collection. The pain in my sternum was akin to the cliché of having an elephant stomp on your chest during a heart attack. Thank God I had been forewarned by all the paperwork I had signed.

What has been the hardest thing about your MM journey?

• How it has frightened my family. I hate that they worry about me all the time. My husband and I had always assumed we’d grow old together. Now I’m not so sure. I try to find happiness in every day; however, it’s easier said than done sometimes.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Go to a TOP cancer center for treatment , where your physicians and their staff have untold years of experience in treating MM and they can anticipate your needs. Even though you feel so out of control, you can take charge in some aspects. Remember that it is YOUR body and YOUR health insurance paying the hundreds of thousands of dollars, so speak up! For example, I found my first bone marrow biopsy excruciatingly painful. I realized that I would have many more in the future. From then on I had the biopsies done under anesthetic – I’m out for a few minutes, don’t feel a thing, and I’m on my way. Ditto for MRI until just recently. Now my fractures are healed enough that I can get through it without any sedation. I would want a newly diagnosed MM patient to realize that he/she must ask for help. Friends desperately want to help you, but they might not know how. Tell them! One of my friends recently commented that she had always been terrified of M.D. Anderson Cancer Center, and now she feels as though she could give tours of the place because she’s spent so much time with me there!

How have you been able to stay positive and encouraged in your MM journey?

• It’s difficult. I’m always waiting for the next shoe to fall. My husband is a phenomenal caretaker. I literally owe him my life. My children, grandchildren and sisters are so loving and supportive, but I feel tremendous guilt putting them through this. My adored Tony (90 pound black Lab) is always right by my side or curled up on my feet. My transplant oncologist was concerned that I was depressed and suggested a psychiatric consult. I take the antidepressant Lexapro and see a therapist at MDA every month. This has helped me so much. I do believe that God doesn’t give us a burden greater than we can bear. I know that there are millions of people in far worse shape than I. I am extremely grateful to be at MDA. People come from all over the world, and here I am just a few miles away. When I feel a bit stronger and pulled together, I’d like to volunteer at MDA.

After being diagnosed... What perspective was changed the most?

• I truly no longer sweat the small stuff. I keep any negative people out of my life (and that includes physicians and nurses.) I indulge myself in what I love (being with my grandkids, talking frequently with my sons and daughter, planning future trips with my beloved husband, staying close and speaking often with my few close friends, keeping my herb garden in decent shape, playing the piano and knitting when the neuropathy in my hands allows, eating chocolate cake if I feel the inclination.) When I hear of a friend or just an acquaintance who has been diagnosed with cancer I call them right away, and I tell them that I will keep calling (or e-mailing, whichever they prefer) to keep tabs on them. I offer to take them to chemo and stay with them or be with them when they have their port inserted. I am in the unique position to be able to calm their fears.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• I spent part of my childhood living in North Africa (Morocco.) I recall having to wash all food in a solution that tasted like Clorox. When we would visit European countries or the U.S. my dad would joke that it was odd to eat fresh food and water that didn’t taste like Clorox! Also, there was a paper factory nearby where we lived that emitted an awful odor and a few times each year the heavy sirocco winds would blow in and you couldn’t even go outside because the odor was so horrible. I lived on the Exxon Refinery compound in San Nicholas, Aruba for three years in my mid twenties.

What MM sites or blogs had you found good information from after diagnosis?

• Ohhh……you need to be so careful here as there is so much terrifying and outdated info out there. I think the sites that connect with MM patients are the most useful.