New Friends, new information, new goals, new experiences. On this my third and last day of the 2018 San Antonio Breast Cancer Symposium, I am thankful and exhausted. For this introvert, being up and personable for all that time can be difficult! But, it was all worth it. I had the most lovely time sharing a room with my new best friend, Elaine.
Throughout the three days have spent in San Antonio, I met amazing people. Survivors, thrivers, doctors, researchers, and a few drug company reps (just a few–like insurance companies, I’m still not comfortable with Pharma). I learned so much–there are two trials I am going to talk to my medical oncologist about when I get back. They might not be a good fit for me now, but the medication in development just might be significant for me and others with my breast cancer subtype. There is a particular medication that might, just might “close the door” on my cancer’s ability to mutate, a near surety for those of us with hormone positive cancer.
There has been progress of a sort. I am still in awe of all the men and women who work every day, knowing that they will lose the battle most of the time. I am in awe of those men and women who put their lives on the line to participate in trials so that the rest of us would benefit.
Is that progress enough?
I don’t think that anyone would in this arena would say yes. Everyone I talked to acknowledged that we have so much more work to do, that there is so much that we don’t know, that the mortality rate is still too high. No one is more invested in this process than those of us who will die soon without more medication.
It’s hard to be so dependent on people I don’t know and will likely never really meet.
And I think that’s the biggest cause of angst for me. The lack of control. The lack of knowledge. The lack of ability to make any discernible difference. The lack of something to “do” to fix what is wrong with my cells. The lack of a culprit or target.
The loss of dreams. The loss of purpose. The loss of a future.
I’m not trying to be dramatic about this. Finding out that you will die soon, but not now and who knows when is a rock your world kind of moment. For those of us who are type “A” and used to doing something, solving problems, being a force of change, it is agonizing.
Do I feel better after finding out more of the process and meeting the people I met this weekend? Marginally. I can see and identify the places where I might be able to fit into the puzzle that could possibly make up the solutions that could save my life. There is a push to bring patient advocates into the conversation, to listen to us about our experiences and address the quality of life issues we are bringing to the table. I am thankful for that push, for all the advocates who work so hard to bring these issues to the attention of the people who make decisions.
For today, I am happy to be traveling home to my husband and kiddos. I’ll get to love on my nieces this weekend and keep on living the life we’ve made for ourselves. Next week, it’s back to work and back to advocacy and back to doing the best I can.
No Half Measures 