I Have Cancer

I know it has been a long time since I wrote on my blog.  I have cancer and it took the wind out of my sails.  I was diagnosed with Multiple Myeloma last June.  For many months before the diagnosis, I was tired and generally didn’t feel good.  Of course, I kept pushing forward thinking it was just some grief from my mother’s passing.

One day when I was swimming in the Puget Sound doing my usual mile, I was on my return leg and my internal engines just gave out.  I felt like my arms and legs were moving but Iwas standing still.  I felt exhausted and sick.  I had to swim to shore and walk back.  My husband who was waiting for me said I looked grey.  I was cold and it took me most of the day to warm up.  I still didn’t think anything except I needed to take a few days break from swimming.

Luckily, I had a physical scheduled with my primary care doctor.  She did labs.  My protein was high.  She sent it for more testing that returned with an abnormal result. However, without further specific testing, the diagnosis could not be determined.  I was referred to a hematologist/oncologist. I live in Seattle and couldn’t get an appointment at the major cancer center or other center for two months.  My brother in law knew the head of the myeloma department at Memorial Sloan Kettering in New York City. I was going to New York for a family reunion and was able to see the doctor within the week.  He was kind, knowledgeable and scheduled me for the appropriate tests three days later. The day after the testing, I had the diagnosis; Multiple Myeloma. One week later, I started treatment in Seattle with a doctor recommended by my Sloan doctor who personally called.

Hearing the words “you have cancer” changed my world forever.  Multiple Myeloma is not curable but is treatable with hope of long remissions.  It took  over three months for me to say the word cancer in my brain.  Every time it would come up, I would deflect it.  It took six months to say it out loud.  Eight months later, I still can’t believe it but accept the reality of living with cancer.  I have been through six months of chemotherapy and am 50 days post stem cell transplant.  It has been an arduous journey, a journey I have done with the support of friends, family, colleagues and my medical team.

Having spent the last eight years as a patient advocate helping clients navigate the healthcare system, it was my turn now. I have cancer, my world has changed and I am going to share in my blogs what that is like personally and also dealing with the healthcare system.