I am a 60 year old caregiver for my husband who is 65. July 2017 he was diagnosed with Multiple Myeloma. In January 2018 he had an autologous stem cell transplant. He achieved MRD but was on maintenance lenalidomide from April 2018 until September 2019. In September 2019 he developed C-Diff and pneumonia and ended up in the hospital for 5 days. They did a bone marrow biopsy in October 2019 to see if he could discontinue the lenalidomide. He was then diagnosed with Myelodysplastic Syndrome. Another blood cancer. The doctors are pretty certain he got MDS from the chemo he received before his stem cells transplant.

He started treatment for MDS January of 2020. We are going through treatment on a clinical trial at Mayo clinic and also our local hospital/clinic. The first 3 cycles of treatment everything was scheduled and we proceeded just fine. He has just started cycle 7 but with cycle 4 thru 7 we have had delays because of low neutrophils and WBC. How do people handle the delays? The not being able to plan anything because you don't know when your next cycle of treatment is? How do you handle the anxiety of not so good lab results? Who do you talk to? It is hard to talk to friends and relatives. My husband looks great and feel good. If you look at him you would never know he is going through cancer treatment. So it is hard for people to understand the anxiety and emotional rollercoaster I am on. I have always been a planner. The more information I can have the better. I don't find a lot of information for MDS. This adds to my anxiety. If I knew what to expect, what to watch for, etc., I think I would do better. As a caregiver are you offered a social worker or someone that you can talk too? We have never been offered any of those services so not sure if they are available.

Any tips or tricks that others use to lessen the anxiety and stress would be helpful. I can tell myself to just live in the moment. That works some of the time. But then I start to worry again. So looking for resources and emotional support.

Kris