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Jeanne Hartzell

 

Hartzell_Jeanne

My mom had a lot of health problems about 15 years ago and found she had Candida, a yeast infection throughout her body. She was treated by an MD and returned to perfect health until she was diagnosed with MM April 2001, on Good Friday. 

She had been sick with what she thought was a long flu for about 6 weeks. I finally convinced her to see her doctor. She had injured her hip the previous August and had had back pain for about a year. At her doctor appointment, her labs showed anemia, hypercalcemia and elevated creatinine (2.0 -- we had no idea this meant a 50% loss of kidney function). She was referred to an internist. Her doc mentioned a disease similar to leukemia. When my mom asked him if it was a life-threatening illness, he said that was what they were ruling out. When we saw the internist I had a horrible sickening feeling but when she said Multiple Myeloma I was relieved. I hadn't heard of it, so how horrible could it be? 

At the end of the visit when I grilled her about treatment, she finally told us the only treatment was chemo. It was incurable, and my mom had at best 5 years. It took a minute to sink in... 5 years before she would be better? Then... no, I realized with an electric shock what she was saying. I kept talking in hopes something I said would make her realize she was mistaken. That weekend was the worst of my life, even worse than when my dad died at the age of 40, when I was 17.

We saw a local oncologist the next week, but I have never been one to settle for mainstream. I got on the web and read about thalidomide. Turns out the internist wasn't quite up on the latest info. When I asked the oncologist about thalidomide she didn't know much and we knew we needed a new doctor. My mom was so sick at this point I was doing all the research and found her a new doctor in Seattle at the Seattle Cancer Treatment and Wellness Center. The first thing he told us about was thalidomide! my mom began on thal. and Decadron and her blood counts improved. 

At this time the real danger was her kidneys. Her blood showed an elevated IgA level with light chain Bence-Jones. I am still not sure how these go together because I understood it was one or the other. Her doctor consulted with a top kidney doctor, and when her creatinine reached 4-5 they decided to try plasmapheresis in attempt to reverse the kidney damage. It was unsuccessful, and 2 weeks later she began dialysis 3 times a week. I still believed it was temporary. That was 6 months ago. 3 months ago she began to have a lot of bone pain and her blood counts dropped. Even though her IgA was normal, her doctor decided the disease was active and a change in treatment was needed. (Due to her kidney failure the urine protein cannot be evaluated.) At first he added Decadron and an antibiotic, but after a few weeks things didn't look to be improving, so he decided to do low-dose chemo. She in on doxal and Vincristine in fractionated doses. In the meantime, I was trained to do her dialysis and I do this "daily" 6 days a week. As a result her blood is cleaner and she will feel better when the disease in under control.

She also takes many supplements and a mushroom extract and Essiac tea.

I believe taking an active role in your treatment, having an advocate and RESEARCHER and a good attitude are as important as the doctor you choose. We are considering a bone marrow transplant but it is scary. Her 3 sisters were tested because there is a study of a simultaneous kidney-bone marrow transplant we wanted to get her into, but none were a match. So it is either autotransplant or unrelated donor. I just want to find something to help her feel like the healthy strong person she was 11 months ago! She has lost 40 pounds on a frame that was of perfect weight before she got sick. I know there are so many great things on the horizon, but she can't get into any trials because of her kidneys. So we are playing a waiting game that is very painful to watch.  

 

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