Scatter my ashes here...

Scatter my ashes here...
scatter my ashes in the desert...

Saturday, October 24, 2015

Whirlwind in the Desert: BRA Day

I'm home, looking at the cool fall colors, after a week in Arizona. I managed to catch a nasty cold, probably on the flight down there, so I'm sniffling, hacking and snorting my way through the day, surrounded by piles of tissue and tea cups.

This blogpost isn't much about running, although I'm proud to announce that I have now been consistent with running most days of the week for the past 6 weeks. This coming week I'm sure I will cut back in order to get over this crud, but I feel like I've finally reached a point where the running is habitual again. I was up to nearly an hour and a half of running 4 or 5 days a week with some 2 hour runs thrown in there. Still no interest in ending my current hiatus from doing any running events, but we'll see how that goes...

I went down to Scottsdale to visit my dad and stepmom, and speak at an event in Tucson. Wednesday October 21 was BRA Day, Breast Reconstruction Awareness Day. It's intended to educate women about a full range of options for breast reconstruction following mastectomy.

Most women don't find out that they have a range of procedures to choose from that include using their own tissue to reconstruct breasts after a mastectomy, often they rush into immediate reconstruction with expanders and then implants, without being informed about all the possibilities because of microsurgical techniques that allow the patient's own fat and skin to be harvested and a blood supply established to create a more natural appearing breast.

More about that in a few... I flew down and the weather was un-Arizona-like. It rained like hell two nights in a row, a deluge of rain and hail in different parts of the valley. I ran early Monday morning with my running friend Chris and another friend of his on the canal, before the sun came up. It felt more Florida than Arizona with the humidity.

I hung out with my dad and stepmom, my dad is doing somewhat better and it appears that chemo is working. We won't go into the details of the possibility of relapse, which is fairly high, but he's feeling better and things are going well overall. Things are looking up now. It's great to see him getting his old energy back. Not quite himself, but he's improved dramatically.

I met with a social media expert while I was down there and will be using his services as I move forward with my business endeavors. I finished a big chunk of work before I left and now I'm switching gears from developing content to marketing.

Then it was time to go to Tucson for BRA Day. I met Terri online, now I can't even remember the exact circumstances of our connection but we started corresponding last summer and Terri wanted to make a BRA Day event happen in Tucson and she perservered along with the help of some nurses and social workers in Tucson who convinced the powers-that-be that it would be a worthwhile event to host.

Terri assembled a panel of speakers and the backing of local businesses to support the event and it came together despite many hiccups and speedbumps along the way. I agreed to help in any way I could despite being out of town.

We set it all up in the lobby of the U of A Cancer Center, which looks and feels remarkably similar to the Cancer Center we have here in Fort Collins. It was dumping rain as we carried all the supplies and donated gifts from Terri's car to the lobby of the Cancer Center.

We didn't have a room, podium, or formal presentation set-up, just some lobby furniture and a screen, and a microphone. But we did it, and it worked. One of the nursing staff members bought the refreshments herself. Local businesses donated prizes. Terri's son recorded all he could on the Periscope app on my phone. Of course my phone battery died even with the extra battery pack, so we didn't get to record most of the speakers. We have a learning curve with Periscope, which has some glitches itself.

I spoke on "Reconstructing Well-Being", about some of the overall wellness, prehabilitation and lifelong habits to adopt regardless of where a person might be with regards to cancer treatment and reconstruction decisions. Terri talked about her experience as a patient, there were nurses, social workers, tattoo artists, a plastic surgeon's PA and a breast surgeon there. Topics ranged from sexuality to surgical options to cosmetic appearance to more personal experiences from a patient who is also a nurse.

We had no idea how many people might show up for the event but we hoped it would be at least a couple of dozen. As it turned out we had a good 40-50 people in attendance. Afterwards we cleaned up and moved the furniture back to where it was, and it was time to party!

Afterwards four of us, the three nurses and Terri, went out to a Mexican restaurant for food and margaritas and got serenaded by a mariachi band, and decompressed. It is so amazing how every health system, nurses, cancer centers, and administration work the same everywhere.

This event only happened because of the work of Terri, a patient advocate, and her backing by a nurse and social worker who wanted to do something needed, useful, important, and meaningful for patients. It wouldn't have happened otherwise.

This is what it takes, people need to speak up and be vocal. Advocating for yourself as a patient, and for others who face similar experiences, as Terri does, and health care workers advocating for patients' needs and filling the gaps in information and care, all of that only happens at the grassroots level. With the corporatization of health care, the people up high are running a business. To use an overused term, there is a disconnect yes- I hate cliches too - between the business of health care and the service of health care. Service is what it needs to be about, otherwise we won't be serving anyone's best interest except the people who stand to profit.

The only way to make things work for the people who need the services is to do the footwork, be vocal, don't back down, and persist. It takes effort to make worthwhile things happen, and if at first it doesn't fit, make it fit.

Just like you have to move and make some effort to improve your health, changing the way the system works will take real effort toward movement. Sedentary habits won't create change.

No comments: