Posted by: Teri Simon | 2012/09/09

Cancer Fatigued

fatigueGood afternoon, my friends.  It is a GLORIOUS day here in Middle Tennessee, with a crystal blue sky and temperatures in high 70’s.  Just beautiful, and such a nice departure from all the rain and high winds we’ve had lately which have left me 3 out of 4 times with power outages and fried appliances and no cable.  Truly one of those days when you can feel thankful for a lot of stuff, even if you’re only looking at it from the inside out.  I need today (and yesterday, too, which was just like today, although I spent it in the house in my jammies), because I am suffering from a serious case of what I’m calling Cancer Fatigue.

My definition of Cancer Fatigue is simple:  “Being sick and tired of cancer.”  A year and a half ago, I stated to my wonderful oncologist, Leora Horn, that “I don’t want to play this cancer game anymore.”  She thought I meant I was giving up on treatment.  What I meant at the time was that I was weary from this mess I was in.  If cancer was a game (which is it not), I had had enough of having to play it, and I wanted to take my ball and go home!  Thank me for playing, give me a consolation prize, and let it all just go away!  Of course, it didn’t work like that, and no, I was not then and am not now giving up, but geez.

I find myself once again sick and tired of cancer.  Fatigued.  Overwhelmed.  No, more than that: Frickin’ Sick and Frickin’ Tired of Frickin’ Cancer!  It has taken over my whole life, and permeates everything except my dreams, which I confess to you are sedative-induced so they’re interesting and sometimes weird, but hardly memorable, and never in them do I have cancer.  It’s pretty much all that’s on my calendars for the past going on 3 years.  Nowadays, I am grateful that I’ve felt good enough for the occasional breakfast, lunch, or dinner out with friends,the rare concert or movie, doing light grocery shopping (provided someone goes with me; I learned the hard way that I do NOT have the stamina to do the large load stuff by myself. Dammit.), short errands, and such.  But I haven’t gone to the mall in I don’t know how long, although I never really was a mall person anyway (yes, this female HATES shopping).  Not that I would want to go again, but to have the option, well, it would have to be in a wheelchair and it just isn’t the same, you know?

In the years I was raising my kids and working as a social worker in child abuse/sexual abuse prevention and intervention and teaching at our Religious School, and co-directing our temple’s Kids Choir, KIDS were my focus. My day was always about children.  It was all about what was best for kids, mine, yours, everyone’s, here, there and everywhere!  It permeated my life, this desire to make the lives of children wonderful if possible, or at least better if they had suffered maltreatment!  And I never, ever wearied of it.  Not once. It was mostly joyful work.  Yes, it upset me, all that abuse I learned about and witnessed injuries of, all the suffering, but you see, I was able to be part of the solution, and I stayed fired up and in the zone about it.  I never ever wanted to give up ever!  Never wanted to take my ball and go home.  Ever.

But cancer as the focus of my days?  A little tougher.  I am part of some amazing organizations that are all about helping people with cancer, or specific to lung cancer: The National Lung Cancer Partnership (which is having its annual Advocacy Summit right here in Nashville this coming weekend), The LUNGevity Foundation, which is holding a Breathe Deep Nashville 5K Run/Walk on November 17th, so Nashville area friends, please check it out and consider signing up, The Lung Cancer Alliance, which my friend, Jenny White just started a local chapter of, and is holding a Shine a Light on Lung Cancer Vigil on November 13th (and yes, November is National Lung Cancer Awareness Month), Gilda’s Club Nashville, which is celebrating its 14th birthday this Friday with a big bash, and a couple of online communities, like Cancer Support Community, WEGO Health, and WhatNext, and this past Friday, Stand Up 2 Cancer (which I donated to).  I do not regret, nor do I wish to end my relationships with any of these organizations.  I do not regret, nor do I wish to end my support of all my friends and acquaintances and Blog Buddies, and people who have found me online or by accident who are dealing with cancer.  Not at all.  It’s just that it seems like cancer is ALL I do, and I’m pretty sure there used to be a lot more to me than cancer.

I seem to recall that I was a pretty good writer, and a good and creative music writer.  I think there were things I used to like to do, but now that I think about what they were, hmmmm.  Maybe not.  I mean, I never was a shopper, I rarely went or now go to movies, I didn’t go hear music, go to shows, go dancing, etc.  Well, maybe I’m discovering that I’m just a boring person!  Maybe if cancer weren’t the focus of my life, I’d still be in a pickle trying to figure out what the focus should be, as my youngest steamrolls toward heading to college in a year, and I face an empty nest (Lord willing), what to do with my time, with my days.  But at least without cancer, I’d have a choice, and more stamina and such.  Still, shouldn’t I be about more than just cancer?  Shouldn’t I, at age 50, with a history of having been kinda good at other things, and dedicated to helping others, have days that aren’t about cancer at all?  Shouldn’t I get a break from cancer, cancer, cancer all the livelong day, every darned day,  at least every now and then?  Shouldn’t I?

Cancer is tiring.  It’s depressing.  It’s sad, it’s hard, it’s challenging, it’s frustrating, and it is everywhere and part of my every day.  It is relentless.  And I’m tired of it.  Cancer Fatigued.  And I don’t know what the answer to it is. Yet, I will go in tomorrow with my determined face on for my next Vanilla Bean infusion, bearing the tell-tale signs that I’m also back on Tarceva again (rash has sprung up on the right side of my face, and little bit on my arms, so I THINK it’s a Tarceva rash, but I’m not sure), waiting to hear if my insurance company is going to cover radioembolization treatment for my liver metastases.  As if I’m not fatigued at all, as if it doesn’t bother me that this is pretty much ALL I do with my days.  Because a fatigued attitude is ultimately not the best attitude to go into chemo with; just makes the treatment seem like a bummer instead of a potentially healing thing.  I won’t do that.

I’m so grateful for  any of you who have read this particular blog all the way to the end.  I realize now I really needed to vent, and you gave me an opportunity to do that!  Wow.  How cool are y’all?  Really, I thank you!

May you have a week that doesn’t fatigue you in any way!

Teri, the Cancer Fatigued Flying Elephant

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Responses

  1. lynn,
    i’m so sorry that you’re in the land of lung junk, too. i’m glad you found something you could relate you in my blog. please know you’re in my prayers!
    teri

  2. Teri,
    Thank you for this blog. I found out in late Feb. that I have lung cancer. I had no clue as to what I would be facing. I am feeling the chemo brain (forgetting words in mid-sentence), and tired of my life being controlled by cancer. I am also tired of being worried about bills, rides to Dr.’s appointments, and what the affects of my illness has really done to my family.
    You have found a way to share your journey with cancer with a good attitude. I don’t think I could do that, or maybe it is just that it is still rather early for me.
    I will be back to read more.
    God Bless.
    Lynn

  3. Thanks, Trish–I likewise appreciate your wisdom and straightforwardness! Despite the crappy reason we know each other, I’m so grateful we do! You are a blessing in my life!

  4. Teri, I echo what Felice said. You are further down this road that I too am traveling, and have served as my guide and friend. I love that you always give me space to vent when I need it and share your experience when I hit something new. It is such a relief to be able to speak plainly to someone and such a rare treat to have someone who doesn’t try to negate or pacify or fix it. You listen and get fired up with me and that is what I truly need in my life! You have gifts! You are serving! You are needed!

  5. Teri – I am new to this blog and was referred to you by our shared acupuncturist – Sara. She thinks we should meet and after having read your “rant” (as YOU say, not me) I would feel so blessed to get to know you on any level. Even if it is just getting to read these glorious blogs. You have already inspired me to be a better mother just for today! Much love, Kehaunani (kay-how-na-nee)

  6. Thank you johnnie! You’re very sweet!

  7. Teri, im reminded by your blog of my offer to take you out and talk of something other than cancer and while we may have done that there was no follow up. Mostly because I accidentally fell in love with someone. But for the record and hopefully to help, I see and think of you as someone with so much more than cancer. You add so much to this world aside from your tenacity and strength as it applies to cancer. I love and admire you for all you offer!

  8. thanks, catherine! and thanks for making the statement about taking time for ourselves. so very true, yet something we all seem to seek “permission” to do! i’m hoping for all good things for you!

  9. it was awesome to meet you in person, too, amy! you are just amazing, and i’m so glad i know you (in person, now, too!) i’m keeping you in my prayers and hoping for all good things!

  10. So nice to meet such a brave, courageous fellow cancer warrior last week at 100 Oaks Teri. Keep telling it how is. Good luck with your treatments and keep fighting!

    Amy Willett

  11. Yep – this is such a relatable feeling. It’s wonderful to get involved with organizations that support people with cancer, but when our whole day is ‘cancer-cancer-cancer’ (and I mean beyond our own health and treatments) then where is the escape? Balance is a good thing, as are vacations from this world. There’s nothing wrong in taking time for yourself, as I’m sure you know.

    Thanks for sharing about cancer fatigue, I think it’s something many of us get pulled into occasionally.

    Catherine
    http://www.facingcancer.ca

  12. continue the fight because there are so many behind you to keep you going!!!! Date: Sun, 9 Sep 2012 20:33:50 +0000 To: grammyapplepie@hotmail.com

  13. Thank you and bless you for this, Eileen!

  14. Teri,
    Your sharing is not solely about you. Each time you give all of us a chance to look inside of ourselves and acknowledge who we are at a moment and how we can be the next moment. Thank you for your openness. You generously allow us to be part of your life and reflect on our own. That’s how you have stayed true to yourself as long as I’ve known you. I will remember you in my prayers including having gratitude that you share your experience, faith, hope and love with all of us.

    Eileen

  15. teri – you are SO much more than a woman with cancer. when i first met you, knowing that you had lung cancer was the furthest thing from my mind. you are full of LIFE much more than you are full of the disease. i admire all that you do everyday, and knowing that you do it all while you deal with the yuck of cancer makes it even more admirable. hang in there this week.

  16. Thanks Diane. I appreciate te encouragement and your suggestion. I’m so glad you have a “diversion” in your life, and I really admire you knowing about a bit of your health situation. Your tenacity and attitude inspire me! Glad we can do that piece for one another!

  17. Thanks for this, Felice. I so love and appreciate you!

  18. Thank you Diana- you really encourage me!

  19. At the end of the summer, I felt exactly like you – everything was cancer, all the time. It seemed I spent 100% of my time saving my energy for appointments or going to appointments. It absolutely sucks. Luckily for me, with the start of my 7-year old’s school year, I have to now save my energy for being a taxi driver. I’m glad to have the diversion. Because you worked with children, I wonder if there is some organization that could use you as a volunteer on days you may feel good, even if just for an hour? Like in the children’s reading room of a library? My heart goes out for you and hope you are able to find whatever activity it is that helps you feel connected and contributing to life. I can without a doubt say that your blog makes a positive impact on my life! Diane

  20. You, my cherished friend, have every right–and then some–to be sick and tired of being tired and sick!!! Cancer sucks and sucks so much out of life and living…it is incredibly hard and only gets harder as time goes on…so of course you are worn the hell out!! Let me correct you though–you are SO MUCH MORE than cancer…you are mother, sister, friend, teacher, supporter, advocate, writer, musician, artist, social worker, connector, listener, guide, cheerleader…and the list goes on and on. You don’t realize the impact you have on those around you–or on those who only know you in a virtual way. Yes, your time is currently cancer cancer and more cancer with a side order of cancer…but somehow you are able to still be all of those other things–reaching far outside yourself to love and support and teach others…and doing it all really exquisitely. I appreciate your venting and as always, I appreciate you and your friendship. xo

  21. Teri, I did read it all the way to the end and so much understand the fatigue you feel – it breaks my heart and rather than just feel your fatigue – I wanted you to know how much you touch so many people and help them as you always did before cancer. Sending you love and courage always, Diana

    Sent from my iPhone

  22. Thanks, Marci. I wonder about writing a book for kids. I’m not a kid going through this- and it would have to have a child’s perspective. If I come up with a way to interview some kids or teens and their parents, maybe I could do it…… Hmmmmmm…now you’ve got me thinking about it! Thanks!

  23. I always read to the end. I think you are amazing writer. Once again I have to say, I think you should consider a kids book about cancer that takes the “scary” out of things like the port, the hospital, etc. You have a wonderful way with words and just as wonderful a way with kids–it would be a perfect match. As always, thinking of you. Marci

    ________________________________

  24. Beautifully said, Teri, and I agree with you. Love and blessings to you.

    Laura

  25. Oh, so many prayers and hopeful blessings are heading heavenward for you from me right now! I imagine the lack of family support is maybe more painful than the lack of Medicare help. I’m so sorry for what you suffer, and pray that thing turn around in a positive way for you soon!
    As for attending services, no, I won’t be there. I dont feel like I will benefit from services and sermons that aim to make me feel guilty about my faults or my not supporting Israel enough when I need messages of hope and support and about a God that encourages me and invites me to be with Him/Her.
    And there I go venting more!
    Shana Tova to you- truly with hopes of sweetness!

  26. Ahhh, the New Year approaches, and I struggle to account for anything or find wisdom within me. So I read you, my younger Friend, and find–once again–insight and encouragement and permission to vent. Yes! This morning, I hopped on one foot from the bathroom sink to my wheelchair. Occupying it was our always opinionated, mouthy, 20# cat Growler Louise. Now I don’y believe in moving cats or yelling at cats, but Parkinson’s makes me fall, and leg surgery has rendered me a tripod. I wanted my chair, so I explained to the cat that Medicare paid for that bottom-of-the-line chair because I was 65-1/2 and paid into the system my whole life. And now we are broke and disappointed in and hurt by family and it’s MY CHAIR, I reasoned. She gave me that annoyed cat stare and growled [hence her name]. I didn’t think I could stand on 1 leg and balance myself to lean over and move a cat of her size and disposition without hurting myself–or, worse, her. Or REALLY worse, Medicare’s wheelchair, which I wrecked in Stallworth. After several minutes of pleading with Growler, I gave up and, using the chair as a walker, pushed it and her into the living room.

    If we don’t vent, we don’t let ourselves be real. You give us courage and hope and a hand that reaches out on the path we’re taking. Please know that you are also in our thoughts and prayers and, always, MUSIC. Will I see you over the HHD? I will be there in my chair (possible holding a cat, except R. Laurie is allergic, so I will use my charms to take my wheelchair back), with my leg Velcro-ed onto a horizontal leg support like some kind of weapon. La Shana Tovah, Teri.

  27. Thanks, Charlene! I really appreciate that!

  28. Teri,

    Well, this blog is another heartfelt, real-life writing that you broaden our understanding and passion! This too shall pass and you will be able to add more and more time to your many talents and interests. Three years is a long time but your have made many accomplishments in your home and community. Your communication and strength is the heavy lifting for now. This reaching out and constant involvement despite the pain you go through is amazing. You rock Teri.

    Love you,
    Charlene

  29. i appreciate your suggestions, judith. my only caveat is that i WILL NOT EVER cut cancer any slack. cancer has severely limited my choices of what i can do with my time, and that is unforgivable! no slack gonna be given!
    but the rest of your ideas are awesome, and i thank you for them! 🙂

  30. Oh, Aviva! Thank you for your encouraging and uplifting words! Your oodles of gentle hugs are embracing me even as I type, and I am so grateful! Love you, dear friend!

  31. Dear Teri,

    First of all forget the business of “I seem to recall that I was a pretty good writer.”. You are an incredible writer!! One of the best!! Articulate, empathetic, compassionate, honest, –with the ability to enable the reader to truly look at your world through your eyes!! Even when you are really fatigued, don’t even think of taking the ball and going home. You have no idea what an impact you are having on those with cancer (wow! I am not alone with these feelings!) and those without cancer (wow! So this is really what it feels like–I am beginning to have a better understanding of what living with cancer day in and day out really, truly feels like). This contribution cannot be measured–you have and you continue to be an advocate for and a describer of the courage, determination, occasional despondency, grit and humor that cancer patients exhibit. Along with hundreds (perhaps thousands) of others lucky enough to be a recipient of your eye-opeing and inspiring blogs, I am profoundly grateful.

    Love and oodles of gentle hugs,

    Aviva

  32. Feedback to your vent:

    1. You’re so right about facing your Empty Nest: even without cancer (assuming for a minute that your life wasn’t filled with, and stoked by, work) you’d be facing one of those “I have to re-define, re-purpose myself” moments. So, cut cancer a little slack: it’s not ALL cancer’s fault.

    2. Think of some non-cancer-related things you can still do, or would like to do. Then, focus on one of them. Then, problem-solve to make it happen, even if in a diminuitive way. Song-writing? Sampling at Costco (you can zoom through in a wheelchair)? Art? Take a class, or go to a lecture, or hear an author at Parnassus (that’s on my list)?

    3. Give a nod at least to the possibility that it won’t always be this way. One of these treatments may actually work, and get you to a point where you’re less fatigued…better, overall! Possible!

    With healing prayers and hopes that the treatment continues to be (relatively) kind…and with hugs and love,

    Judith


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