On March 15, along with David Kopp of Healthline, I moderated a core conversation at SXSW. Being selected to do this was a great honor, and it wouldn't have happened without you, my regular readers. So I obviously want to share some of my experiences with you.
What is SXSW?
South by Southwest, or "South by" as the natives call it, is a huge technology, gaming, music, interactive and film conference held each year in Austin. It's hard to describe how much goes on. There were hundreds of talks by thought leaders in their respective fields, showings of new films and music by new bands as well as video game demos. There were robot petting zoos, a maker zone, a job expo, a trade show, a comedy section, and so much more. Keynote speakers range from Jimmy Kimmel to Malcolm Gladwell to Al Gore to Princess Reema of Saudi Arabia.
It is busy and crazy and full of passionate and interesting people sharing things they love and are knowledgeable about. If you are old, like me, and are worried about the millennials, take heart. They are smart, socially conscious and full of enthusiasm, even if they are glued to their phones. Austin itself is a lovely city, growing rapidly, in part because of this conference The energy sizzles. It's a wild west of ideas. Natives though, stay away, as crowds and traffic overtake their city.
SXSW is full filmmakers, music producers, technology experts, all people full of enthusiasm who tend to the younger end of the spectrum. Most of the people I saw were in their 20s, maybe a few 30s. My grey head was the only one bobbing and darting (slowly) through the crowds of people, and I'm sure a few wondered why somebody had invited their grandma. Standing in the line to get their badges, I couldn't help but notice that everybody around me could be my
Although I'd heard about this festival, I had no clue what to expect. I applied to speak on a lark, spurred on by Healthline. I only know I have a topic I feel strongly about, which as you all know is metastatic breast cancer, the end of "awareness" and the need for more money to be directed towards research. Over the course of the past year, I have learned that the search for a cure for breast cancer is insanely complicated and much more problematic than I had thought when I started this process, and in the future I'll focus my blog on some of what I've learned.
One thing has become crystal clear: early detection is not the alter we can lay our hope to end breast cancer. We tried awareness and early detection, and in 30 years, raw breast cancer deaths have actually gone up, by quite a bit. We now know that no matter how early breast cancer is found, in some cases it still spreads. What we don't know is why. And in that "why" is the key to cure. So that is what I was there to talk about.
I wrote an article on this topic - please share it.
In moderating a Core Conversation, I wasn't giving a speech - good thing because with chemo brain I can barely remember who I am much less keep an entire speech in mind. The goal was talking to others who had ideas, experiences and who were interested in the topic and getting them to open up. David was the true moderator, directing the conversation and asking questions, and I was the "expert" having been in treatment, reading a lot about it and sharing a personal point of view. I will share the success of the talk in another post, and there is video that has not been released yet but at some point, I can hopefully share with y'all, as the Texans say. But a lot of other stuff happened during the five days, some exciting, some touching. So here are my random thoughts.
Traveling with Cancer
I arrived midnight on the 12th, with our talk to be held on the 15th, which gave me a few days to adjust to the time change. I'm in a weird place in my life - healthy enough to finally be able to travel and do things like this, but not healthy enough for it to be easy on me or even really enjoy it. Recovery, once home, literally took a week.
Most people think that when they are diagnosed with an incurable cancer, that they would travel and go on adventures. The truth is, for me and many others, if you are in treatment, you are too sick to go anywhere. Despite what you've heard, chemo is not a walk in the park and it makes travel nearly impossible. When you do chemo after radiation after surgery- for years- the most traveling you do in one day is from bed to couch, and your dreams change from a Hawaiian beach to a hot bath.
Now, after being NED for a year, I am better. Not healthy by any means, but I can do it. I'm not spending 3 days unconscious in bed, or staring out the window at my birds. I can move. I'm exercising. I'm able to go shopping (although not without pain) and I can get up at the incredibly early hour of 10:00 a.m. Yet, travel is physically demanding, and I don't look forward to it. (Whine ahead!) If I stand up for more than a few minutes, I have stabbing pains in my side. There is no explanation for this, and so no solution. My back hurts. I get headaches easily. My shoulder and right side is weak. Carrying bags is hard, walking is hard, keeping odd hours....is hard. I only have about 5 hours a day in me before I crash and burn (or take a ritalin to keep going) but, I must remember, that 5 hours I more than I've had in years. Progress is incremental and because a cliche is in order: it is not where you are now, it is how far you have come.
Eating is one of the most difficult things I face - I must get calories into my body but somewhere in treatment I left my appetite behind, and not only don't I feel hunger, it physically hurts to eat. I hover at 94 pounds and that is worrisome to my doctor. Being off schedule makes it worse. I think I only ate twice during my five days in Austin (not counting fruit for breakfast. (Those two times were pretty good though!)
We stayed at the Hyatt Place in Downtown Austin, central to all activities. The Austin Convention Center was right across the street, the Marriott where my talk was held was two blocks away. So I was situated perfectly. The hotel staff was solicitous and kind, and the place was spotless and contemporary. But there was a serious problem - the room only had a shower, no bathtub. For a person whose bones ache terribly, and who walked 4,000 more steps per day than normal (which is 40) a hot bath is a necessity. I missed a bath every day that I was there. Like the proverbial starving person talking about burgers and pizza and ice cream, I kept talking about baths and hot water.
So, here I was, at one of the most exciting and youthful events in the country, nervous about my upcoming talk and noticing my age and infirmity, and longing desperately for a hot bath.
Would it be worth the pain?