We can cut through the unspoken. The fear that was the elephant in the room..... the elevated liver enzymes are NOT a progression. The PET scan results are in... The bone seems to be "less active" and there is nothing on my mom's liver.
HUGE SIGH OF RELIEF.
I was on the phone with the oh so spectacular Kwanele from South Africa to share this good news and to figure out what we should do in order to shake things up GLOBALLY. She's had her own fair share of medical limboland nonsense...... which sidetracked us from global strategizing for a brief moment. It prompted us to add another phrase to that list of "goes with the territory" and if I hear it again I might be inclined to go to a very ugly place.
It's the sentence, when spoken by a clinician, that begins as follows:
"With YOUR History, ______________ "
Fill in the blank. I know you get it. I see you all nodding your heads in agreement. CJ told me that it's not unusual for some sort of medical issue to pop up every so often. It will never get easy, but I will follow CJ's lead and Lori's lead ...... and learn to navigate these strange and choppy waters.
Now that this is on the shelf, I can focus on some very important events that I'm excited to share. In a few weeks, I will be attending the American Association of Cancer Research (AACR) Annual Meeting. I was invited to participate in the survivor <---> scientist program--->. This meeting draws a crowd of about 17 THOUSAND people. There will be plenty of opportunities to connect with people who are passionate about research. It's a bit serendipitous that the new physician in chief at MSKCC, Dr. Jose Baselga is the Program Committee Chairperson for the meeting this year. That pretty much puts him at the top of the food chain at the meeting AND at MSKCC.
The only problem? I have to do a poster presentation. I selected the topic, I know where I'm going with it but the actual artsy layout.... Let's just say I'll write anything but I don't have a creative bone in my body. I see these wonderful infographics and even the word bubbles and am fascinated by the use of the colors and the lines and the arrows and ..... My topic is already published in the program so I suppose it's okay to share. I will be explaining how social media impacts the effectiveness of patient advocacy. Despite the lack of words at my mom's party, I have no problem talking about any and all aspects of this. Unfortunately, I can't speak before an empty seven foot board! While others be jittery over the speaking to people part, I'm all about the appearance of that board, my back drop. I hope I can do justice to the work of the bloggers and the twitterverse.
While I'm in Washington, DC, there is going to be a Rally in support of research. There is a crisis and we are at a crossroads. Tremendous potential for meaningful progress seems to be on the cusp of reality. Finally. I can't sit on the sidelines and watch. Doing nothing feels selfish. I seem to be saying that lots these days. The AACR Meeting rearranged the sessions so those who wish, may participate in the rally. Thanks to social media, everyone can participate by sending a message about the importance of science and research.
And then, there is the Supreme Court....... oral arguments against Myriad labs are being presented on April 15th. Breast Cancer Action is one of several plaintiffs in that lawsuit. Myriad has made enough money. Their stronghold is affecting research. Enough already. The damn patent is expiring in 2015 but this needs to be decided once and for all so that it can't happen in the future. That's all about BRCA genes and testing for those mutations and I'm jumping into that fray, too. I'll share more when I know more.
The buzzword is COLLABORATION. Anyone that stands in the way of working together toward a common goal must be pushed aside or climbed over. Get on board or get left behind.