Sleepless in Seattle: the C4YW breast cancer conference
Me and my roommates Terri and Julie at the Saturday night dance at the C4YW.
On the personal front, I’ve always wanted to visit the area, and I added on a couple of days to do just that. I tooled around with my friend Julie, who has been living well with advanced cancer for seven years. Julie had brain mets a while back and is all clear. She had enough energy for the both of us! We stayed with her chemo buddy Cynthia, who is 10 years out with advanced breast cancer. They both had treatment on Thursday, so I had the opportunity to visit them and fellow patients in the chemo suite. There were so many success stories in that room that I could write another book featuring just them! Another chemo buddy of Julie’s, Terri, was also a seven-year stage IV survivor and shared the hotel room with us. It was so great to see so many people surviving long and well! While there, I was able to meet in person my friend Elizabeth, whom I mentor through Imerman Angels and treated me to a lunch of Pacific salmon.
After a morning at Pike Place Market, where I purchased organic fruit, beautiful glass necklaces and funky wool hat, we went to the conference. I had maybe a half hour to relax before going to the Young and Metastatic breakout session, in which I served on a panel with three amazing young survivors. As it turned out, I was the only woman on the panel who was first diagnosed with early stage cancer (mine was stage 2 at first before spreading to my liver and distant lymph nodes five years later in 2008.) Seems there are still too many doctors out there who think breast cancer doesn’t happen to young women.
The rest of the conference, I mostly attended breakout sessions for metastatic survivors. Here are some highlights and not-so-highlights from the sessions:
- Metastatic Breast Cancer: A Medical Update with Virginia Borges, MD, University of Colorado Cancer Center – What I loved about this talk was how optimistic Dr. Borges was about treatments. She actually said there were so many in the works; she can’t keep up with them. She broke down research for the three types of breast cancer: HER2-positive, ER-positive and Triple Negative. Of Course, the big news was the FDA approval of TDMI for HER2, which happened the day before. Of course, my focus was ER-positive for selfish reasons. She talked about androgen receptor research and that 88 percent of ER-positive patients in a study had it. There is currently a Phase 1 b/2 study looking at targeting this receptor. One trial I’m watching is a hormone treatment called PD-0332991, which was announced at San Antonio’s breast cancer conference. http://www.huffingtonpost.com/2012/12/06/pd-0332991-breast-cancer-drug-her2-negative-estrogen-receptor-positive_n_2247063.html. She also mentioned some work being done on drugs that potentially can treat brain mets by breaking the blood/brain barrier. On the negative side, she downplayed the role of diet in fighting cancer and also the role of sugar feeding cancer. However, she must have mentioned three times how important exercise was to preventing recurrence.
- Creating Your Legacy, Yvette Colon, PhD, Metacancer Foundation: This is one I didn’t want to attend but glad that I did. It prompted me to revisit our will and Durable Power of Attorney (we are seeing our lawyer next week). It also inspired me to do some pre-planning for a funeral as to make things easier for my husband and vice versa. She also talked about legacy writing, in which you state what you love about your life, what you’ll miss, etc. to leave for your loved ones. I never thought I could approach this so dispationately, but it’s actually a relief to get these things out of the way. It doesn’t mean I’m planning on dying any time soon, but it’s wrapped up for when I do. I found this site, which allows you to download a state-by-state living will form (which states your medical care preferences in the event you are unable to communicate them) http://www.doyourownwill.com/living-will/states.html.
- Sex and Intimacy, Barbara Musser, Founder/CEO of Sexy After Cancer. I had the opportunity to get to know Barbara during the Friday night dinner for Pink Fund bloggers and supporters. She’s a hoot! She also knows her stuff and shared all kinds of great tips for cancer survivors to get their mojo back. I like that her suggestions were ways to establish intimacy; not necessarily with intercourse as the end-goal. She calls this “othercourse,” which includes gazing into each others eyes, hand holding, communication and weekly sensual dates. As she stated, many of us suffer from dryness and pain during intercourse due to surgery- and/or treatment-induced menopause. She also had some suggestions to help remedy that! Most of us rushed to her booth for free samples of lubricants and copies of the Vaginal Renewal program. Visit Barbara at http://www.sexyaftercancer.com/ and catch her (and my) blog at www.thepinkfundblog.wordpress.com.
This entry was posted on Friday, March 1st, 2013 at 7:57 PM and is filed under Great sites and organizations, Medical developments, Relationships, Treatment options, Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed.
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Heidi Bright Parales MDiv says:
I think creating a legacy is so important for both you and your family. It’s a positive way for them to feel connected to you, allows you to express your innermost feelings for them, and can provide them with wisdom for their own lives. Time to write your life story!
And for the living wills, if you want to go that route, see if you can do some research into options that might not be expressed on the document you get. For instance, I have heard that people who get their hearts jump-started can live with the resulting pain for months, even years. If someone is nearing the end of life, they might want to prevent that measure from being used. And consider whether you want water and/or nourishment. Good to think about these now, while you feel good. Good for everyone to do!
Beth L. Gainer says:
Hi Tami,
I’m playing catchup on blog reading, and I loved this one. It is so encouraging to see people living longer with Stage IV cancer, and you and these individuals are so inspiring. I hope there is, however, a cure for this disease. Thank you for providing all this comprehensive information.
And why not have a second book. Loved the first one! So glad you had some R&R there, too.
xoxo
Beth
Beth says:
To all those out there who have never met Tami in person, I can safely say that she is one heck of a lady. She is dynamic, inspirational, physically and spiritually gorgeous and a pure joy to spend time with. We are fortunate to have her in our lives.
Come back to Seattle soon – we miss you!
Sam Elliston says:
Sounds like you had fun and learned alot as well as teaching others- why am I not surprised?
I like the way you find joy and fun in everything, hard things and easy things.
And thanks for the site for making a will and remembrances – all of us need that reminder.
Always glad that I read your blog
Sam
tamilb says:
Thanks Beth S.! You are too kind!I could say the very same about you! Sam, Beth G. and Heidi, thanks for being loyal readers and for all of your support. I am definitely working on that second book. Thanks for the good advice about living wills, Heidi!
Jan Baird Hasak says:
What an encouraging post for us advanced cancer patients. I am now among them, having been diagnosed as Stage IV in November 2012. That is why I have been silent on the blogosphere for so long. It is so good to see so much progress. I’m a HER-2 positive gal and am benefiting from a clinical trial of T-DM1 and pertuzumab together. So far, so good. The fact that you have met so many patients who are years out from their diagnosis just speaks to me in a powerful way. And I like the fact that diet and sugar don’t play a role, but exercise does. I love to walk, so I will continue that activity for a long time to come.
Yolanda Rosa says:
Your blogs are most encouraging and most of all inspiring. I am a year and half out from being diagnosed with Stage IV BC, and I have to say, I seldom find myself reading the same sentence over and over about how people are 7 or 10 year out from Stage IV cancer. The fact that its possible and its happening does boost your morale.
Thanks for being you and having this blog, what a weight off my shoulders to read such incouraging news.
tamilb says:
Yolanda and Jan, so glad you are encouraged by my posts. We all need to her encouraging stories; I believe it is so important to show anything is possible. I am living well with stage IV cancer since being diagnosed five years ago. I look forward to sharing with you that I’m 10, 20 years out! Hugs!