Anthony here. Thank you for all of the support during this incredibly difficult time. I wanted to post some of the more amazing stories and blogs that have been written about Rachel over the past couple of weeks. My comments will follow soon along with a complete video and transcript (thanks to Ronnie and Sarah!) of the Memorial Service.
Dispatch From Second Base
Bringing Up Goliath
Women With Cancer
Anthony, the video and transcript are on their way. Thank you for the compilation of words for Rach. She was so loved. I miss her. There will be many more words for her.ReplyDelete
Rachel left us so many of her own words.
Didn't know if you'd seen her comments from last month.
In January 2012, Shirley Mertz, a volunteer with MBCN, asked for people's help with setting a metastatic leglislative agenda:
WHAT WOULD YOU ASK OF…
>Your local cancer center
>Your family members and/or friends
>Your local congressperson or senator
>Researchers and scientists
>US Food & Drug Administration (FDA)
>Breast Cancer Organizations
>Early stage breast cancer survivors
As always, Rachel was the first to respond. (This could not have been easy, given that she had the use of only one hand.)
Here is what she wrote:
January 6, 2012 at 2:06 pm
Your oncologist: When discussing new treatments be honest about potential side effects, and how these might affect quality of life. Be proactive in discussing and offering palliative care.
Your local cancer center: Integrate mental health services as part of treatment plans.
Your family members and/or friends: Listen, learn and advocate. Don’t be afraid to talk to us and ask questions.
Your local congressperson or senator: Metastatic cancer of any kind kills in >90% of cases. Prioritize research spending in this area, and develop incentives for pharmaceuticals to translate research to game-changing drugs.
The President: As above.
Pharmaceutical Companies: People before profits please. Share research failures and successes. Set the bar high and shoot for game-changing drugs, not incremental drugs where success is measured in months rather than years.
Researchers and scientists: Collaborate and share research failures and successes. Be bold in putting together research proposals. Present as a united front in the war on metastatic cancer.
US Food & Drug Administration (FDA): Redefine language in clinical trials to allow for tumor prevention drugs to make it past Phase 1. Per letter from Dr Michael Fernandes:
“One criterion for approval of anti-cancer drugs is lack of progression, and progression is based on an increase in tumor size over time. However, it is not tumor size per se that kills, but invasion and subsequent metastases, which are unrelated to tumor size.
The tumor-reduction paradigm has not delivered, and potentially beneficial drugs continue to be rejected if they do not block tumor growth. Unless “progression” is redefined as local invasion and metastases, the problem will remain.”
Breast Cancer Organizations: Metastatic breast cancer is the one that kills. Prioritize and direct funding to innovative research in this area as well as providing real support and advocacy. Moments of silence and faces and names memorialized on t-shirts isn’t enough. Stop erasing the suffering of those with MBC with huge public displays of jolly pink celebrations for survivors. Examine your measures of success. Does your organization affect outcomes for MBC patients? If not, why not?
Early stage breast cancer survivors: Advocate, advocate, advocate for MBC. We can’t do it on our own given treatment and cancer side effects, and ultimate prognosis.
Yourself: Hang in there and keep being heard on the issues that concern me.
I suspect we are going to find Rach's words in many places. Thank you for taking the time to post this here. I am on the ADVOCATE ADVOCATE bandwagon and I'm NEVER getting off.....
Thank you, Anthony, for providing all these great blogs. Bless you.ReplyDelete
Anthony, you don't know me but I am one of the thousands of people who was truly touched by Rachel's blog. She actually found me on my blog (channeling jackie-o)... and gave me encouragement in my own cancer fight (carcinoid cancer). I thought you might like to read the small tribute I put to Rachel on my blog. You and Rachel's loved ones are in my heart and prayers. She is missed.ReplyDelete
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