Posted by: Teri Simon | 2012/03/11

Updates!

Good evening to all of y’all!  Sorry this missive is a little late; I had both a CT scan (of my chest and abdomen) and an MRI (of my brain) this evening, and this is the most motivated I’ve been after a particularly sluggish day. Before I begin, though, let me set the tone for tonight’s blog by inviting you to step back into yesteryear and enjoy a little SNL Weekend Update, 1970’s style.  Check this out!

OK, now that you’ve had a giggle, I’d like to bring you up to speed on a number of things people have been asking me about recently:

1.  Y’all were asked a couple of weeks ago to assist the fine young people of Washington University’s Relay for Life Team in raising $48K in 48 hrs. Many of you have wondered how it went.  Well, the team did not get to the $48K mark, but they still broke the university students’ record (which they previously held, by the way), and raised $34,000 in 48 hours!  So many of you donated to Prianka’s personal page and she is ever closer to achieving her goal of $1,000.  If you’d like to contribute, you haven’t missed your opportunity; they fund-raise all year long.  You’re welcome to check out Prianka’s page.  Of course, you know I NEVER EVER insist on anyone doing something that isn’t in their heart (what’s the point of that????), so if there are other causes nearer and dearer to your heart than this, please, I encourage you, make a donation and help if you can.

2.  Flying Elephant Book #2, Turbulence for a Flying Elephant: My Second Year in the Land of Lung Junk,  is now available for sale!!!!  I’m so excited to tell you that it went on the market just a couple of days ago!  You can read more about it on my website, and purchase it on amazon.com.  As with the first book, 75% of all sales proceeds will go to benefit Gilda’s Club Nashville, The LUNGevity Foundation, and The National Lung Cancer Partnership. Ironically enough, it was this very book which was of assistance to me yesterday when I had a little bit of a low spot and needed a boost, or at least a little understanding.  It seems a year ago at this time (almost exactly), I was embarking on yet another clinical drug trial, after the treatment/trial I was on became a “fail” for me.  I know–very familiar, huh!  It was very cool to me that my very own words and experience were what got me out of my funk yesterday.  If I can do that for other people, well, then, there’s that tasty icing on this very dense and somewhat unsatisfying cake, you know?  Anyway, the book is there, thanks to my friend Kim Phillips, and I’m pleased as punch about it!

3.  OK, OK, I’ve delayed the health update for as long as I could, darn it all.  I confess that I’ve been a bit on the bummed-out side of my kind of normal lately.  Finding out that the third treatment in less that 6 months wasn’t doing its best on your cancer is not my idea of happy news.  I’ve been managing as best I can, but that means lots more naps, more Tylenol (extra strength, ’cause yes, now there’s pain in my life again), and an extra anti-anxiety medication that I take at night to help me sleep better and feel a little less freaked out.
I agreed to participate in another clinical drug trial (hence today’s tests), this time a Phase 1 trial (meaning the drug has been tested on mice and monkeys, but not on humans before); all hail the human guinea pigs!  Just for laughs, here’s the title of the study:  A Phase I, Open-label, Dose-Escalation Study of the Safety and Pharmacokinetics of MPDL3280A  Administered Intravenously as a Single Agent to Patients with Locally Advanced or Metastatic Solid Tumors.  Ain’t that somethin’?  Basically, what it means is that a pharmaceutical company is checking to see how much of an immunotherapy drug they can give patients safely and effectively without anyone needing to cry “uncle.”  I was literally first in line for the lung cancer protocol at Vanderbilt.  I’m special.  At least that’s what I keep telling myself.  See, Phase 1 trials are typically offered up to really really really sick patients, or patients where there just isn’t too terribly much else that can be medically done for them.  You know what I mean, right?  Kind of “last ditch effort, but why not help medical science as your personal ship sinks?”  Except in my case, I’m really really really HEALTHY!  Not even kidding!  My labs look great, I’ve gained weight appropriate for a nearly 50-year-old post-menopausal woman (darn it all!  i have to have cancer AND be fat!  what’s up with that????), and I’m in really good shape, even not all things considered.  So, maybe I’m like the “ringer” of the study or something?  Anyway, that’s what I’m gonna keep telling myself.  Otherwise, well, it’s just very depressing.  Very.  Depressing.  (Maybe I need to watch that SNL sketch again.)

4. How am I doing? Well,at this point in my disease progression, it’s easy to get bummed out.  Felice at Gilda’s Club Nashville last week said something that really rings true for me:  “The longer it goes, the harder it gets.”  And no, we weren’t talking anything sexual in group; get your sick minds out of the gutter, for heaven’s sake!  We were talking about how when you have cancer, especially a form of cancer that is not going to go into remission, or will repeatedly come out of remission over time, the longer you live with this disease, the harder it is to live with this disease.  It chips away at your body and your spirit and your psyche.  It hurts physically to have bone metastases and to have less breath capacity.  “Take a deep breath” means something way different for me than it used to.  It hurts the spirit and the psyche to sit and watch your generous friends do your yard work for you; many, many thanks to Aryia for working my back yard, and to Teri M. (and Ronnie H.) for the work on the front yard.  I’m gonna be the envy of the neighborhood this year for sure!  I did all the landscaping at the last two houses I’ve lived in.  Me, myself, and I.  Proud to have done it.  Sad to not be able to do it anymore.  Grateful for friends who will do it for me.  Pissed off that lung junk is chipping away at me, making Felice’s statement all-too-true.  Suckage.  Feh. It reminds me, too, of something my friend, Julie, (“assume the position”) said a while back:  instead of me having PTSD (post-traumatic stress disorder), I have something more like OTSD (on-going traumatic stress disorder).  Sounds about right to me.  Feh again!

5.  So I cheer myself up by finding ways to help in the world (oooo, my favorite thing to do!).  I can’t do as much as I used to be able to do, but I do what I can!  Right now, I’m on the committee to plan November’s LUNGevity Breathe Deep Nashville 5k.  I’m on a lung cancer advocacy committee for the Tennessee Cancer Coalition (TC2).  I was recently a guest blogger on the National Lung Cancer Partnership’s website. And I had a blast being interviewed on a local rock radio station for their Make a Difference segment last month.  I LOOOOOOOVE doing interviews and speaking out about the stigma of lung cancer, the need for more research dollars, for more understanding, for more hope.  LOVE IT!  If you have any thoughts, ideas, contacts, connections of how I can do more of that, please pass it along!  I mean it!

OK, I’m pooped!  I hope this is enough of an update for you, and if it’s not, lemme know and I’ll answer whatever lingering questions you might have.  I hope you have a week of good tidings, good news, good fortune, and good health.

Much love to you all,

Teri, the Updated Flying Elephant in the Land of Lung Junk

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Responses

  1. Brenda,
    Thanks so much for your kind words. I have to say, though, that there’s absolutely nothing wrong with feeling crappy about having cancer. I know I sure do sometimes (cancer sucks!), and I would never deny myself, or anyone else, the down time to feel lousy about being dealt a lousy hand. It’s the wallowing that I find to be counter-productive and not helpful in the long-run; you end up missing out on some life if you’re so busy feeling sorry for yourself that everything else is passing you by. Even the little things in life are worth the notice, you know?
    You’re in my prayers, too, Brenda, and I continue to hope for good outcomes for you.
    Much peace,
    Teri

  2. Teri – I’ve never met you, but I’ve read your book, & I admire you so much. And I know this – you are one of the most inspirational people in this land of lung junk. Every time I act like an crying idiot on this roller coster – I say to myself – GET A GRIP!!! What would Teri do? She would find a way to make something good of this. Do like she does and STOP feeling sorry for yourself!!! You are a beacon of light to so many people – how neat is that??
    It totally sucks but you are showing the rest of us how to ” grow a pair and deal with it” You should be proud!! You are in my prayers Teri!
    Brenda

  3. Teri-keep your head up. Power of prayer is awesome. You are such a inspiration to so many. You are so funny, caring, and giving. I can’t wait to get your second book. I appreciate the way you strive to help others in whatever you do. Sit back and watch the love people have for you by doing things for you. That says it all and you so deserve it. I love you my friend and will do whatever i can for you. Just give me a ring. Maybe this new drug will help!

  4. Sorry to hear about your journey but happy to see that you have great friends, optimism, and humor! What a great way to deal with such a terrifying ordeal…

    BTW, what a great photo! How is the rest of the Canton family and where has everyone landed?

  5. Teri, you just amaze me. I’m looking forward to reading Book #2. I hope you have great response to the new drug. I think guinea pigs are much feistier than people give them props for being!

  6. Jodie- you and your mom are in my prayers. May each day bring you all at least one thing to laugh about. Remember: cancer sucks, but y’all ROCK! May there be peace….

  7. Prayers, tears, hugs, and more prayers for you.. my mom is stage 4 adenocarcinoma w brain,mets… I hate it.. The roller coaster ride of emotions blows! I am half way thru your first book and just got it yesterday! Wishing you well. Stay.strong!


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