Posted by: Teri Simon | 2012/08/19

This One for the Caregivers

Well, my friends, once again I find myself dedicating my blog to the memory of a fellow lung cancer patient and LUNGevity Foundation Lifeline friend.  I just found out today that my friend, Mickie M. passed away this past Friday after 8 months of dealing with stage IV lung cancer.  Mickie could well have been named “Moxie,” because that’s what she had, through and through, even as she was released from her suffering.  My heart hurts for her daughters and her beloved husband, and I know you join me in prayers for their comfort and peace at this time.

I’ve said it before, and I’ll likely say it again and again:  cancer sucks.  This past week, as I received the news that the Taxotere wasn’t successful for me in keeping the liver metastases at bay, I also exclaimed to my friend, Felice, “Fuck Cancer!”  She suggested there should be an even more forceful way say that, and as my brother and I worked through the remainder of the week while he was here, and I switched my treatment to Vanilla Bean (actually Navelbine), which left my legs feeling like lead and has really made me tired for the rest of the week, we thought that only a word with biblical force would do.  We have settled on the word SMITE.  And, yes, it’s best if it’s in all caps.  No smiting here.  Not even Smiting.  SMITING, people, SMITING!  With biblical force, all caps SMITING of cancer!  SMITE the liver mets!  SMITE them, I say!  Go Vanilla Bean!  I say that as I move into a bit of a spiritual phase of dealing with Wednesday’s kind of set-back (’cause that’s what it felt like to me), and am not really prepared to share with you what that spiritual phase is like for me; kind of private if you know what I mean.  I have a deep connection with my God, and it’s not anything like yours is with your God, I assure you, but it is right for me, and my God and I are working through, rest assured.  I will say that it’s not exactly helpful for me to hear right now things like, “God only gives you what you can handle,” “God has a plan for you,” or “God will get you through this.”  My God, the one I commune with daily, that God wouldn’t plan for cancer that needs SMITING.  My God wouldn’t give me this to “handle.”  Rather, my God shows up in the middle of the messes that life brings by, and offers me guidance and comfort and options and presence.  My God isn’t mean spirited, although sometimes the things I’m asked to do have been rather astounding and sometimes scary.  This may be another one of them, but anyway, I’m just saying here there may be a time and place when I share with you more about my faith journey, but today is not that day, even though I’m in the middle of it for sure!  I hope you understand (maybe?), and I still am grateful for all your prayers and good wishes!  This is a rough patch for me, and your support will get me through!

So I want to spend today’s blog on you, the supporters, the caregivers, the cheering section.  We often forget that cancer, as well as any other chronic and debilitating disease, affects more than just the patient.  It hits the whole family and friend system.  It shakes more than a tree–it’s like an earthquake with radiating circles moving outward into a network of people.  It affects everyone.  However, none is affected quite so much as the closest-to-home-caregiver, in many cases the spouse, or adult children.

Recently, as in the past week, it was brought to my attention that long-term caregivers, typically spouses, are at greater risk of developing serious and chronic diseases like heart disease and cancer, than spouses in their same age brackets with similar health situations who are NOT caregivers.  I was stunned to learn this, but two people I know of are evidence of this, having both been diagnosed with cancer recently, (one a recurrence after more than 16 years of having had it, and following the death of her cancer patient husband about 8 months ago, and the other diagnosed last December after over 20 years as caregiver for his wife who has MS, although he had no predisposing risk factors.  I looked into this phenomenon a little bit and offer you up this article from USA Today.  Not that I love statistics or anything like that, mind you (I am the “anti-prognosis girl”), but it is evidence of something that I didn’t know about before, and something, now that I know about it, think is totally unfair!  I mean, really?  You spend all this time lovingly caring for someone who is dealing with a horrible situation, and then find yourself having to have someone to care for you, all while it’s likely you didn’t get as much support as caregiver as you likely needed?  What is THAT about?  Do we need to SMITE something else here?

It’s motivated me to offer in today’s blog some resources for the caregivers out there.  You should have support as you support others, for heaven’s sake!  What you’re doing is nothing short of heroic, and believe me, the ones you care for are way grateful even if they can’t express it (unless they’re really bitter and challenging patients, in which case you have my extreme sympathy and I admire your willingness to martyr yourself for someone else’s comfort); I know I am soooooooo grateful for all who care for me, with extra-special gratitude to my brother and my kids and my BFFAEAEAE, Lisa.  It really hasn’t occurred to me until now how THEY might need to process what they go through with me, aside from the fact that I know my kids have good therapists and friends to talk with, and we’re pretty honest and open with one another.  But I would never want anyone on my support team to not feel supported!  Like I said, it affects us all.  We patients should want our caregivers to have all they need to keep a-goin’, and to avoid that nasty USA Today- given statistical stuff!

So here you go, caregivers, my links to resources that might help you, might give you insights into how to ease some of the burdens, how to connect with other caregivers, how take care of yourselves so you don’t end up with something you have to SMITE.  I can’t tell you how great any of these sites are, because I don’t have personal experience with them, but I have looked them over well, and am only including what I think are most helpful.  Additionally, I encourage you to do Google searches of blogs of caregivers for whatever type of situation you’re dealing with.  A lot of people on the Internet are sharing their stories with the hopes that they can help others, and it’s great to link up with people who really know and understand.  Here’s the list:

Caregiver.com

Leeza’s Place

Cancercare

LUNGevity

Rosalynn Carter Institute for Caregiving

Imerman Angels

American Heart Association Caregiver Pages

Agingcare.com

Medicare.gov

Additionally, your local YMCAs, Jewish Community Centers, hospitals, senior centers, Gilda’s Clubs/Wellness Communities, adult day care centers, or local chapters of whatever illness you’re contending with may have resources and support groups just for caregivers.  Often these are offered free of charge, and the friendships and advice you could find there could be priceless.

For all my personal gratitude for those who care for me, it is not enough to thank you.  Rather, it is wise, I see now, to implore you to take great care of yourselves!  To make sure your needs are met, and you are supported, too.  And that goes for each an every one of you caring for anyone like I’m being cared for.  PLEASE–avoid needing to SMITE anything.  Let others help you as you help!

With much love,

Teri, the Flying Elephant, caring a little bit more for the caregivers

 

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Responses

  1. sharon,
    thanks for this. i had dna testing when i was first diagnosed–that’s how they found the EGFR mutation that put me into the tarceva clinical trial. to do further testing is prohibitive for me: i’m not in shape to have tumor biopsy, and insurance doesn’t cover the $5000 it costs to do that. my understanding is that the lists of drugs that tumors may be resistant or sensitive to isn’t always comprehensive, and it is also still a list, one that you have to, by trial and error, try and see if it works. so i’m continuing on my path, hopeful that one of these suckers will be the golden ticket, grateful that lung cancer research is kind of exploding with all kinds of options these days, and going back on tarceva next week, in combination with my vanilla bean treatments. apparently there is evidence that given with chemo, tarceva reactivates and works again. fingers crossed!
    and i’m so glad you’re doing well—may tarceva work for YEARS for you!!!!! 🙂
    teri

  2. Dear Teri, As a fellow lung cancer patient diagnosed with Stage 4 over a year ago, who is doing well currently, I truly urge you to consider the targeted chemotherapy through Assay testing through either Dr. Robert Nagourney in Long Beach Ca. (Rational Therapeutics website), or some type of targeted Molecular Profiling as mentioned in the Lungevity website. It see seems like since Tarceva stopped working for you, you have been given chemotherapy drugs such as Taxotore etc, that supposedly work for a certain percentage of people, but are not individualized to your specific cancer cells and therefore have not been that successful for you. I truly urge you to explore these individualized options that target your individualized cancer cells, as time is of the essence! I myself, am on Tarceva currently, but I can assure you that if it stops working, I will be on some type of individualized therapy that has a good chance of working on my individualized cancer cells through Assay and/or DNA testing. Although there is certainly not a cure yet for Lung Cancer, it is my understanding that this is where the future lies. Wishing you the best!


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