Posted by: Teri Simon | 2012/09/30

What Did You Expect?

what did you expect?Hello, my friends.  Sorry this blog is so late; my eldest child is home for her fall break, and my mother’s cousins are in town this weekend, and of course there was the full house of visiting going on here this afternoon.  It’s always good to visit, but it sure can skew your schedule a little bit!

So this week was, for me, where my hopes and dreams were realized, but certainly not what I expected.  I mean, I was totally prepared to go to my appointment with the fabulous Leora Horn this past week and hear, “I’m sorry, Teri, but your tumors have grown.  This treatment isn’t working.”  I had even practiced responding in the waiting room with my brother while I waited to be seen.  He said those words, and I didn’t cry or anything, just asked, “What do we do next?”  Then he said to me, “Your tumors have shrunk!”  And I have to say I was rendered speechless; I had no reply.  I had no idea what to say.

And sure enough, Leora came into the room (and by the way, I’d still call her fabulous if she had rendered bad news), saying, “Your tumors are smaller!”  And as practiced, I was speechless.  So was Sam.  I asked her to say it again, and she did, and then she said, “Do you want to see you scans?”  And we said, “Yes,” and she showed us, and then we really kind of caught on to what she was saying. It still took the rest of the evening, and part of the next day, to really synthesize the information.  For the first time in a year, finally, FINALLY, a treatment is working!  It was NOT what I had expected.  I was prepared for hearing bad news so that I wouldn’t suffer the disappointment I had suffered 6 weeks earlier when I felt so good and thought my scans would show that finally, FINALLY, a treatment was working.  But I was devastated to find that it was  just like all the others that preceded it and did NOT work.  But good news?  Not so prepared.  Not what I expected.

There are other examples of things not being what was expected.  One is every home health nurse who has come to my house to drain my lung catheter.  Apparently on paper, I appear to be pretty darned sick, ravaged by cancer, really in bad shape. I mean, my diagnosis is Stage IV Metastatic Non-Small Cell Lung Cancer, with metastases to my brain, my eyes, my other lung, my liver, and my bones (lots of bones).  When the nurses come to the house, they find an average looking 50 year old woman, who still gets around (OK, I need my chairlift to get up and down stairs) pretty well, and looks pretty normal (well, as normal as a 50 year old crazy lady can look).  They struggle to reconcile the woman described in my medical records with the woman they see before them.  Not what they expected.

Another example is when I’m out somewhere and I run into a friend or acquaintance I haven’t seen for a while.  They are typically taken aback that A) I’m out and about, and B) I look pretty good (thank you very much).  Not what they expected.  Now, I’m not always out and about like that.  Chemo makes me really tired, and kinda sick for a few days after my infusions, so when I go out, I’ve worked hard to be able to do so.  But when I do go out, I really do enjoy it, and I’m always excited to prepare for an outing.  And I don’t always look pretty good.  Sometimes I look kinda scary.  My hair does this funny wing thing because I always sleep on my left side, and the Tarceva rash has definitely settled in on my face.  But mostly I look pretty normal.  Sometimes I don’t feel so good, but that doesn’t mean I wouldn’t like a little company, it just means to call or email first to see if it’s a good time or not, and please don’t get offended if my response isn’t what you expected, and is more of a “not now” kind of thing.  I’m going to be honest with you because if we’re going to spend time together, it should be GOOD time, you know?

Of course, I never expected to get cancer in the first place, especially LUNG cancer.  The media had lulled me into a false sense of security that because I never smoked, I’d never get LUNG cancer.  What a big lie!  Although I imagine any kind of tough diagnosis like that would be something unexpected, and would take a long time to process.  I’m in favor of compassion, trying to find support groups to help you (they tend to really understand where you’re coming from), and being kind to yourself as you deal with the unexpected.  And yes, life itself is full of the unexpected.  Some unexpected things are awesome (like getting told your treatment is working!), and some are awful (like being told you have a terminal disease), but it is, after all, life.  You can roll with it and go with it, or you can let the unexpected defeat you.  The choice is always yours.

I pray that this week you have only unexpected happenings of the awesome kind and that you deal with it in an appropriately grateful and joyous way!

I send you love (as expected) from the Land of Lung Junk,

Teri, The Flying Elephant

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Responses

  1. Of course your “hair does that wing thing…….”……..you are a FLYING elephant!!….enjoy your relatives……there is nothing better than being hugged by people with whom you share DNA!!

  2. Lynn-
    If you’re basing how I look by my website picture or my facebook picture, you should know those are about 5 years old, long before cancer came into my life. Today I have very short, thin, gray hair (except where the haircolor is still working).
    I think it’s wonderful that your husband says you look good.
    Rock on, girl!

  3. Nina- I’m so glad you found a support group! They can make all the difference! I’ll be hoping for the best for your CT scan!
    I send you love,
    Teri

  4. Teri, I am so happy that your tumors shrunk! Great news!!! I have continued to pray for you. I’m having a CT scan in mid-October. Hope I get good news also. Sorry I haven’t corresponded via American Cancer. I finally joined a support group in Delaware that meets on Wed. evenings. There is one other lung cancer patient (stage 3a), but she smoked. Not like the rest of us non-smokers!!! Take care and please continue your shrinking! Nina

  5. Teri so happy for you and the news of the shrinking tumor.
    I wish I could relate to the way you look. My hair is starting to come back, but it will be white or at least all gray when it is all back. My problem is that I lost more than 60 lbs in less than 6 months. I know I will get to the point where I think I look good, but for now it feels good when my hubby tells me I am looking good.
    God Bless you. I will continue to pray you.

  6. My unexpected news today was “shrunk tumors”! How fantastic and what a great start to the New Year. May you only hear continued good news like that. After all, you DESERVE a little respite. Your comment about visiting was not lost on me – phone or email to clear first. Good idea for sure. Be well, my dear.

    Love ya,

    Bob

  7. And, as expected, I send you love back. And hugs. And Yasher Koach!

  8. sending our love right back at you Teri,

    Ronnie & Jeanette

  9. Diane-
    I’m holding you in my heart and sending you my love. Lots of prayers, too. If there’s more I can do, please let me know. I think you are amazing!

  10. Teri, you lift me up and give me strength to keep up my own flight! I got some of the unexpected bad news this week with a disappointing PET scan. Wednesday, I have an appointment with my research oncologist to go through the options. Your blog gives me hope that there might be a positive answer for my next course of treatment.

    Your comment about your looks – I can totally relate! New people are almost stunned when I tell them I have stage IV lung cancer. I love being able to walk around in public without uninvited, pitiful stares. In the past three months, I’ve even had doctors (who have seen scans of my awful insides) walk into the room, look at me, and walk back out the door! They always return a second later after confirming they have the right room, but I still get a little laugh out of it. Fooled them!!

    Virtual hugs to you!

  11. Yea for vanilla bean and tarceva!

    Sent from my iPhone Please excuse any typographical errors committed by auto correct.


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