Tag Archives: caring

The Importance of Community as a Cancer Patient

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It has been almost exactly a week to the hour since I pulled up into the parking lot as a Camp Bluebird newbie. Since my diagnosis over two years ago, I’d not checked out any peer support beyond a few phone calls from LLS First Connection program. One of those callers, Nancy told me about Camp Bluebird and told me I really should come. I missed my first opportunity but did go to the recent fall 2013 gathering. I can’t say enough good things about it. It’s hard to explain but being near and having fun with so many others who are also fighting against and winning against cancer was the ultimate empower-er. That’s all of us above; I’m in the back row almost all the way to the left in the picture. About half are cancer survivors. The other half are volunteers. I love these people for who they are and what they’re doing.

Lesson learned. Surviving cancer with your sanity isn’t a game for lone rangers.

Life Impacted

Bluebird House I just spent a full weekend with about 50 cancer survivors and about that many more volunteers via a non-profit program called Camp Bluebird.  We attended a camp style retreat at a massive 320 acre campground on the shores of J. Percy Priest Lake in Nashville. I truly had no idea what to expect before getting there 2 days ago and I could probably write volumes about the things we did, the people I met and shared with; the environment was so loving, healing and warm. I had a wonderful time and my extended family unexpectedly grew much larger this weekend.
I’m still not sure who Mufasa is but he’s watching! IMG_20131027_115034
Near the end of our time together, we honored and remembered the fallen with a massive balloon release. Teary eyes were not in short supply. 20131027_081325


I can’t wait for the Spring 2014 camp in April.

Hey, where are the side effects?

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I should subtitle this post “Is that it???”. So here we are at day 3 of treatment. I’m on my own, taking the IPI-145 drug twice a day for the next five days. So far, I’ve experienced a total of zero side effects. No nausea, no vomiting, no diahrea, no chills, no sweats. Nothing at all. I had to sign a long list of consent forms to participate in the trial. Most of the potential side effects listed on the form I actually already had from the CLL itself. At this point, it’s looking like I’m in for an uneventful next month (28 day treatment cycle) until the next all-day EKG and blood draw session back at the clinic.

I want to give a huge round of Kudos to all the caring nurses & staff at Sarah Cannon Research Institute & Tennessee Oncology in Nashville. I could not have asked for better, more compassionate care in what could have been a very¬†scary and dehumanizing past two weeks. The clinic setting seems more like a hotel than hospital. The patient lounge is nicer and better stocked than what I’ve seen in most hotels. Thank you all!

Patient Lounge