Posted by: Teri Simon | 2012/09/16

Frying Pan….Fire….Is One Better?

frying pan to fireHello, my dear friends.  Before you read today’s blog, I’d like to suggest you read or skim through last week’s blog as a refresher of where my mind has been lately.  The blog talked about how I was Cancer Fatigued, just freakin’ sick and freakin’ tired of cancer, cancer, cancer, all the livelong day!  It’s important that you remember where I was last week, because I’m about to tell you about what this past week, and especially this weekend has been like for me.  And then you’ll understand the title of today’s blog.

Last Monday, I had another infusion of Vanilla Bean, and got to spend that clinic and infusion time with my dear friend, Julie, as in “Assume the Position.”  It’s been interesting of late to introduce so many of my friends who have long asked me to let them know if/when I need anything to call them, to my routine at Vanderbilt, where, I must confess, they all know me (heck, I’ve been going there for almost three years now), and I am humbled and warmed by the fact that if they know me, and pretty much everyone does, they love me and take really great care of me.  I never ever thought a cancer clinic would be my “Cheers,” but it kind of is.  I know the routine (for now) like the back of my hand, so to speak, and it’s been interesting to work that routine with people who know me well, but otherwise wouldn’t know THIS part about me.  Anyway, it was a relatively easy infusion, except that it once again made me tired and sick for the rest of the night.  After how worked up I had been the day before in my blog, I’m surprised I wasn’t sicker.  But Tuesday I was just tired, but otherwise OK.  Wednesday the same.

Thursday was when things changed in the drama department for me, and that day, combined with the next three that followed, is why today’s blog is what it is.  Because you see, my friends, starting on Thursday evening, my weekend was ALL about cancer.  No, more than that!  This past weekend, I was SATURATED in cancer!  On purpose! (Can you believe it?)

Thursday evening began the National Lung Cancer Partnership annual Advocacy Summit, held right here in Nashville this year (otherwise I doubt I would have been able to attend).  About 70 people from all over the country were in attendance, along with NLCP staff, one of whom I had spoken on the phone with a few times, but finally got to meet in person!  (Hi, Annie!)  It was an opportunity for what they call “survivors” (which means former or current patients, and which I have a little bit of a challenge with because I say I’m “a patient surviving“), people who had lost loved ones to or have loved ones currently dealing with lung cancer, and others simply interested in finding ways to advocate for research dollars or be part of or create fundraising events in their areas, to come together and learn, share, meet, share, and learn.  Pretty cool stuff.  And I must also mention here that I am sometimes troubled by the words “Lung Cancer Advocacy” being placed together like that.  It worries me that if I say it like that, my listeners will somehow think I’m FOR lung cancer and advocate for it!  I’m not FOR it, believe me, but I AM for raising awareness, raising funds for research (and here’s a jolly stat I’m sure I’ve offered up before, but am shameless enough to offer up again:  Annually, lung cancer takes more people’s lives than breast, colon, and prostate cancers COMBINED, yet is the LEAST FUNDED for research!), educating my community and other lung cancer patients, and maybe getting involved in reviewing documents for research (like informed consent forms) and giving a little consumer input.  (Hint: If you follow that link above for the National Lung Cancer partnership, YOU can learn more right now, and/or you can go to the online donation page and help out right now!)

But funny things happened to me Thursday night as we were introducing ourselves, and continued to happen during the course of the weekend.  Things like, when someone introduced herself and said she was there because she had lost her mother a few months ago to lung cancer, I found myself in tears, thinking, “oh my God, in the future, that could be one of MY children saying that!  oh no!”  And like finding myself in a workshop and listening to someone’s story of diagnosis and feeling overwhelmingly blessed at how things had worked out for me, but had been a struggle for this person, and having that Survivor Guilt kind of thing kick in.  And sitting in a workshop about fundraising opportunities and knowing I will NEVER, EVER have the strength or stamina to put together an event, let alone participate in one as anything other than a sitting down, not running around volunteer.  (That made me cry, too.)  And this morning, when things were wrapping up and we were all given what turned out to be, thank God, an optional exercise to write ourselves a letter with our advocacy goals written down, which would be mailed to us a year from now so we could see how we had done.  Well, that made me REALLY cry, and I didn’t expect it to, but all I could think was, “heck, i don’t even know if i’ll be ALIVE next  year.  and i just wouldn’t want to have died and then that card be mailed to my house and my kids have to deal with it!”  But it was Annie to the rescue, who told me it was an optional exercise, and if that happened (my death) they would NEVER send the card.  I didn’t do the exercise.  I was too upset by thoughts of my mortality and the fact that my next scan is a week from tomorrow.  Yes, scan-anxiety has already started to set in.  Feh.

In addition to spending so much of my weekend truly immersed in the Land of Lung Junk, I also spent Friday evening at Gilda’s Club Nashville, celebrating that excellent organization’s 14th birthday!  It was a lovely event, y’all, and entertainment was provided by the Beltones @ Belmont, of which my daughter, Taylor, is part (have I ever mentioned the girl can SING?).  Of course, I met a few people there, too, one of whom had just joined Gilda’s Club the day before, and another who shared with me that he had recently lost a loved one to cancer, even as he was dealing with his own cancer, and was having a lot of trouble managing his grief, despite therapy and group work and such.  It was so heartbreaking.  But at Gilda’s Club, we all kind of speak the language of cancer, and so even though it was so sad, it felt good to listen to these people and share stories, and offer some comfort and re-framing (my specialty) and understanding.  I was still Cancer Teri, the Flying Elephant, but I also was Helper Teri.  Gratifying.

And it was gratifying to do more walking in the past 4 days than I’ve done in the past 5 months, first aided by pushing my wheelchair, and then using a rolling walker that sweet Felice from Gilda’s Club arranged for me to get.  I cannot tell you how strong and brave and independent I felt, even as I moved at a snail’s pace, and needed frequent rest periods!  I could do it!  And no, I did NOT over-do it at all.  I went home when I had had enough, and didn’t show back up until I could honestly be there.  I napped a-plenty and went to bed uber-early.  I can’t begin to explain to you what that meant to me, but maybe you get the idea.

So in many ways, from last weekend to this, I moved from the frying pan of Cancer Fatigue to the fire of Cancer Saturation.  And probably back again.  A few times.  And I can’t tell which one, if either one, is easier or better or a little cooler.  Maybe the latter is easier, because while I was saturated in cancer, I wasn’t alone.  I was with a lot of other people who are walking this walk or have walked it or loved someone who walked it.  Cancer Fatigue is something I felt I was experiencing alone, well, until I got so many comments on the blog!  To date, I think last week’s blog holds the record for comments!  So maybe I’m not alone there, either.

Here’s what I know:  Cancer is scary, threatening, frustrating, debilitating, mean, ugly, awful, terrible, stupid, horrible, horrifying, anxiety-producing, costly (in many ways), aggravating, heartbreaking, fatiguing, and a lot of other not-so-wonderful things.  It sucks.  Being with others who know first hand about cancer is comforting, sometimes sad (so many are included in “others” and it just ain’t right!), wonderful, reassuring, educational, supportive, inspirational, and edifying.

Here’s what I don’t know:  If it is harder to be in the frying pan of cancer fatigue or to be saturated in cancer, even if only for a few days.  It’ll likely take me a few days to consider that.  I suspect the saturation part is easier, because to be honest with you, after having been in the company of so many others, I feel inspired, and understood, and even a little bit elated, despite the fact that I spent so much of the weekend fighting back tears of personal heartbreak or angst.  These groups of folks made me feel OK about what I was experiencing, and enabled me to recover from it.  Not too bad, huh!

I wish all of you a week where you experience neither frying pan nor fire, but peace and joy.  And for my Jewish friends, I wish you L’Shana Tova:  a sweet and happy, healthy new year!

With love,

Teri, the Flying Elephant, flying between frying pan and fire…..

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Responses

  1. I’m here to help! Let me know what I can do!

  2. Terri, if you want to add one to the frying pan or fire or whatever formula, hey there are always going to be newbies like me and I for one am grateful that you share what you feel. Thank You!

  3. I’m glad I met you, too

  4. How wonderful to have meet you at the conference and to be reading your blog.

    Cheryl Shields

  5. thanks, dad. i’m doing OK today; still a little tired (i found out on monday at my appointment/infusion of fluids) that my blood counts were VERY low. i pretty much spent the entire day yesterday in bed. i feel better today, but still tired. i truly appreciate your concern and you offers of help!
    love,
    t

  6. Good morning, Teri–

    Happy New Year.  I hope so fervently that this year will bring successful treatments and recovery.

    I have just read your last blog and update about the radioembolization situation.  You have amazed me with your report of the events at the Lungevity meetings.  I don’t think I could have handled the emotional roller coaster ride the events created.  It is definitely very disturbing to know that funding for lung cancer research lags so badly.  I thought a lot of the money taken in from the tobacco companies was supposed to go toward research of the disease and treatment of those afflicted with all types of lung junk, and that money would serve as a stimulus for more funds for more research.  It seems we have been taken for ride again.

    How are you feeling today?  Do you want or need anything?

    Love,

    dad

  7. Happy new year to you also,Much love Barbara & Frank

  8. Well,hero might be taking it a bit far, Ronnie! I love you and jeanette too, as do my kids, and appreciate you in our lives!

  9. Thank you sweet sweet friend! Love to you and your guys!

  10. Dear Teri – You are so inspiring…oops, I almost wrote “inspiriting,” and that would have been true, too. I cannot pretend to know what it means to be ‘saturated in cancer,’ as you have been – and cancer still sucks (Big Time) – but your humor and grace are certainly no less evident in these trying days, and what is ‘inspiriting’ is your appreciation of all the little things – walking, Taylor’s voice, being part of the bigger picture through the cancer community, a helper. Thinking of you dear neighbor, and wishing you L’Shana Tova. Love, Patti

  11. Teri, you know you are my hero 🙂 I’m there for you and your kids if you need me.

  12. glad I got this first hand version and was able to encourage you….it WILL be what it WILL be! 🙂 I LOVE YOU!

  13. melissa,
    i’m so glad that you and jimmy are together! i thought of you so much during molly’s final months/weeks, and prayed for you and for her and for her family and many, many friends. it looks to me like there was so much peace and meaningful exchange at the end; what a special way y’all offered her to move on! i’m honored that you allowed me into your life at such a difficult time, and please know i’m here for you any time! i’m so glad we’re friends, despite the way we met! 🙂 peace and many blessings to you and jimmy as you embark on this new chapter of your life together!
    teri

  14. Hi Teri–it seems a while since we have touched base.  I’m so sorry that you are feeling poorly with these treatments of yours.  I wish I could wave the wand and make it all go away.  I have thought of you so often these past few weeks and unfortunately not let you know that.  So now I’m telling you that you helped me more than you will ever know with Molly’s illness and dealing with my feelings and also trying to be supportive and of comfort to the family.  I would hear your voice in my mind or remember words I had read from your correspondences and know what direction I should take.  I don’t think I have ever thanked you for that.  I will do that now–thank you so much for your wise words.

    I don’t know if you know that I have moved in with Jimmy.  It was late July and things have been rather crazy since then.  Molly passed away two weeks after I was here and then her service was two weeks (!) after that.  It seemed like forever but the service and picnic afterwards were great.  Jimmy is maintaining as I guess all of the family is, but there are moments and probably more than I know.  I miss her too–she and I got pretty close and she was thrilled that Jimmy and I were together. 

    So now, I hope that you will let me know if there is anything I can ever do for you.  You gave to me so selflessly and I am grateful.  You helped me to deal with a situation that I knew nothing about with honesty and clarity and I am grateful. 

    I don’t have the wand, but know that prayers are always said for you.

    Love,

    Melissa


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