Yikes, it’s been awhile! A lot has been happening. I saw my lovely endocrinologist at DFCI and he tripled my steroids for a few days to “reset” things and then lower me back down to a higher dose than before since I was having black outs when I stood up ( yeah, that was a lot of fun, for me and my family). The result of this adventure was that I woke up with a ferocious appetite and ate everything in sight. It was a weekend of binge eating for sure. Now that the dust has settled, I’m back to my more reserved tastes. He wants to test my cortisol (or lack thereof) again at the end of May–he is nothing if not persistent!
I was unable to attend the MBC conference this year in Philadelphia because of other commitments but I did want to participate in the “die -in”, even if it was remotely. Weirdly, this event was seriously under attended and few participated on line. Why? I have no idea. It can’t possibly be from burn out right? I did happen to scare the crap out of one of my former students when he saw my “dead” picture on line–clearly not the intended target. Will have to rethink on that strategy for a while.
I feel fortunate that the people in my life never say “at least” or “you should” to me when talking about cancer. Seriously, I am living through the worst thing that can happen to a living person. Let’s all go with that thought and just sit with it. I have thought of all the scenarios and what ifs. It does not matter. My cells decided to randomly mutate and divide on their own, no amount of speculation will change that. I often hear people say “my cancer doesn’t define me.” I don’t get that. My cancer most definitely infuses every thought and action I take–it is not separate from me. I get it in the sense that I can tell when I am talking to someone if the cancer is all they see about me. That’s when they don’t know what else to say to me other than dumb cancery things. (It’s okay, I can take it.) Thankfully that doesn’t happen much—-most people see beyond that and see me, the person standing in front of them with a very complicated life story, a sense of humor and a whole lot of love and support.
Speaking of support, I received the Community Champion Award at a recent YMCA dinner. It was awesome! Not because it was about me, well, yeah, it was, but I got the opportunity to thank a lot of people in that room for caring so darn much about me and helping me and Blanket and the coconuts and never giving up on us when it would be easy to move on to less scary and more fun stuff. I was shocked and awed that two of my students came to surprise me with speeches of their own! That, I will never forget—the tender mercies—those little things that bring love back to me and help me go on.
I also got the chance to attend the beautiful senior prom and watch the kids turn magically into adults and fly away. It is pretty exciting to see the kids blossom over the last four years–their parents would be proud!
We celebrated the little coconut’s birthday after she returned from a modeling gig in Miami–on Mother’s Day. So fantastic to think back a year ago when we celebrated both in the acute care rehab hospital and to reflect on how far from that we have come. Cripes, I’ve had about six trips since then. Living in the cracks of light between all that darkness can be fun!
So many women have died recently from MBC. I know my turn could come at any moment and without warning but I believe I have more time and I am planning on it for the short term–a trip this summer and more birthdays to celebrate for Tim and Kelsey. My next scans are coming but for now I am putting that thought on my back burner so that I can focus on graduation and a quick trip to Maine over Memorial Day. Can’t get too far ahead of myself but I may as well enjoy it while I can. Goal? Stay out of the freaking hospital!
Oh, yeah–the Third Booty for the Battle is happening June 24th this year at the Seaport with Deon Lewis, my favorite Patriots MVP. Save the date!! Lots of surprises await.
My song this week is Fix You. I had no idea that for the past two years Blanket has been humming this song in his head. He only just told me this. See, it’s like an onion–you get to peel back just one layer at a time. What the heck is he going to tell me next?
Keep looking out for the tender mercies, you’ll find them.
Barbara, Blanket and the Coconuts.
Barbara, So happy to hear that you are living life in such a grand way under these terrible circumstances!
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