It took a couple of months for my Aunt Robin to come to grips with how to share with the world that she has a rare life threatening cancer...today she felt ready. It is difficult for most people to process the thoughts and emotions that rush through your body when you are told you have cancer...and especially when you learn that it is a rare, mostly incurable one.

The Hematologist called my aunt on the phone after she had some tests, and he told her that she has Chronic myelomonocytic leukemia (CMML) and Myelodysplastic Syndromes (MDS). The doctor told her they would just keep an eye on her and do blood work in three months. He made it sound like she had nothing to worry about. Aunt Robin got off the phone, googled the diagnosis, and immediately became worried when she saw the prognosis of 12-48 months to live. She called me to help her through the process. I immediately contacted Seattle Cancer Care Alliance (SCCA) to set up an appointment with an expert. And unlike the Hematologist, the new doctor was planning for more blood work, another bone marrow biopsy, more blood work, and now she is placed on the bone marrow registry in hopes of having a life saving bone marrow transplant...all in about one month.

I am once again reminded that we must be our own advocate when it comes to our medical care. Getting a second opinion can not only be the difference between life and death, it can give options that may not have otherwise been considered. In Aunt Robins case, changing doctors may be the only thing that saves her. She was not feeling bad, she has not had more symptoms, and she was led to believe that her cancer was not one of the “bad” ones. Yet her blood work has shown that her disease is progressing, and her platelets are becoming dangerously low. Who knows what would have happened if we waited three months.

Enough about the past—we are now onto the new journey. My aunt is being placed on the bone marrow registry. Many people may wonder how they can help...the answer is a simple and painless one...a little blood and/or cheek swab is all it takes. You will be sent a packet in the mail that requires you take some swabs from your cheek and return the packet to the register. I have included a resource of where to get the information. She is one of many whose life may be saved by your gift. Please share the information with everyone you know..it truly does make a difference!

Be the Match Registry
800-Marrow2 (800-627-7692)
https://bethematch.org/about-us/how-we-help-patients/be-the-match-registry/