Wednesday, December 21, 2016

The greatest story ever told...yours

I always feel that storytelling is such a powerful tool. It is why I continually blog (sporadically at this point) and take the opportunity to tell my story. My hospital has been great about getting my cancer journey out to the world, but what I truly cherish is that because so many people where I work know my story and saw my bald little head they feel compelled to share their stories with me. 

It happened yesterday. I was happily charting away on a patient and a nurse said "Sara", I looked up and she said to me "You are such an inspiration to me. I am just back to work after a year long battle with breast cancer." We talked about her surgeries, chemotherapy and eventual reconstruction. She asked me about how I was doing on tamoxifen and I was honest with her. I've had minimal side effects and that as long as I keep running/moving that I in general feel ok. I told her in the past 1.5 years my hot flashes have been non-existent. Her face lit up with that nugget. We talked about how her dogs thought she was crazy as she walked them 3 times a day during chemotherapy and that she admits to feeling better with movement. I congratulated her on getting back to work and let her know that the fatigue would improve.  We chatted about how the recommendation for tamoxifen is now 10 years and how adjusting to new medications go. 

I now will look for her in the hallway and share our survivor stories. 

She also asked me my favorite question "How long has it been?" "4 years in February". The mix of "wow" and the distant look in her eyes as she tried to process that she will be able to put that distance between herself and cancer treatment was all to familiar. It made me grateful for all of those who shared their stories with me, even when I couldn't imagine putting 4 years between myself and treatment. 

Happy you 

Sunday, December 4, 2016

They see me enrolling...

Despite the PRESENT trial being declared futile, I have not lost my sense of need to be an active participant in the science around breast cancer treatment. That is why I'm enrolled in the Army of Women and friended the Young Survival Coalition on Facebook. Through one of these two places I found the most recent study to enroll in; a study with the Mayo Clinic called "Genetics of Chemotherapy-Related Amenorrhea in Breast Cancer Survivors".

This purpose of this study per their documentation is  "to understand how genetics contribute to the likelihood that a woman may lose her period and/or her fertility due to breast cancer treatment". As medicine moves towards being able to be tailored toward a person's genes I think that looking to see why people have certain side effects while others don't,  is exceptionally important.

This study has a lot less effort/time/blood/scans than the PRESENT study. You can see in near entirety what the researchers are requesting. They wanted paperwork (which I sign and the hospital releases my file), completion of an online questionnaire (not seen above) and a tube filled with spit. Yes, spit. There were even directions to not count the bubbles and continue to produce enough saliva to fill the tube. Then you put the paperwork and saliva in their prepaid, pre-addressed envelopes and send it all on its merry way.

That is it. A tube full of spit, some signatures and these scientists now have data they want to study and saliva to process.  

In 3-5 years we shall see if any correlations can be made.

For Science!