Posted by: Teri Simon | 2012/10/14

Quality of Life

qualityMy friends, I type to you this afternoon from my cozy bedroom, where I can see the trees swaying (and nearly bending to the breaking point sometimes) in the wind.  It’s warm out today, and were it not so windy, one could call the weather “balmy.”  But the wind is beyond brisk, a precursor, I suspect, of coming rains and temperature changes.  Interesting that sometimes the weather gives us a heads up about what’s heading our way.  Sad, sometimes, that our bodies do not always do the same thing.  Often we are hit with no warning whatsoever about a dire health issue, sometimes in a form of a heart attack right after a workout, or a kidney stone that agonizingly makes its presence known, or a diagnosis nobody could have foreseen.  We get hit with the unexpected and somehow have an expectation of figuring out how to manage it and what to do next, provided we don’t get bogged down in trying to figure out how it happened in the first place, often a futile effort considering that most times one can’t UNdo what has been done.

I’ve spent a good portion of this past week, this week which was my “off week” (no chemo, just fluids), in bed, pondering a lot of things.  Feeling lousy and laying around in bed will make you do that, you know: ponder things.  I felt lousy because A) my white blood cell counts had tanked again (this happened after week 2 of chemo the last round, too), B) my allergies are in high irritation mode (as in eyes nearly swollen shut, nose crustier than a drippy 4-year-old’s forcing me to go through 3 boxes of tissues in one week!, and waking up to a fat upper lip each morning, as if all the goo that couldn’t come out whilst I slept had collected there), C) I’ve been kinda nauseous all week, likely from the chemo I’m on, but making it really hard to eat, and D)  I’m kinda bummed out.  Yes, I’m scheduled to see Wonderful Therapist this week.  Yes, I’m taking both my anti-anxiety meds AND my sedative.  And yes–a lot of this is par for the course.  As dear, fantastic Felice from Gilda’s Club often says, “The longer it goes, the harder it gets.”  And if I have to translate that for you, you’re a mess.  Email me right away and we’ll discuss.

As I pondered, I considered that statement, and why it’s so very true.  It has to do mostly, I think, with quality of life.  I mean, sure, I’m heading toward the 3 year “anniversary” of my diagnosis (Dec. 2nd), and when you look at the statistics (which is often such a bad thing to do, because they are sooooo depressing), you’ll see that’s a pretty high achievement.  Sort of.  I mean, OK, I’m not dead.  That’s really good.  Here’s what else is really good:  I can dress, feed, and bathe myself (although I have to use a shower chair because I can’t stand up for that long, and I can’t take baths, even though I don’t like them anyway, because I have a catheter in my side which can’t be immersed), I can still drive (although I have a handicapped placard), I can get around pretty well (although I have both a wheeled walker and a wheelchair), I still can do laundry (provided someone brings the baskets up and down the stairs), I can cook (if I sit at the kitchen table to do the prep work and take a lot of rest breaks), I can talk on the phone to my friends, type emails and blogs, read, watch TV, do a very little bit in terms of advocacy work, etc., all provided I take lots of rest periods and I’m feeling good at the time.  Geez.  I just re-read what I wrote.  Look at all those caveats!  Holy Moly!  Yet, I CAN do those things.

Here’s what’s not so good:  I really NEED my chairlift now.  I’ve needed it all along, I guess, I just was too vain to admit it.  I can’t go up more than 7 stairs without getting really winded.  Sucks.  Also sucks that I don’t have much appetite anymore.  Don’t fully know why, just know that it is what it is.  I often feel nauseous, likely from chemo, maybe causing the lack of appetite, but very disappointing.  I love and miss food! Dangerous, too, because if I don’t eat or drink, I can become dehydrated and that could be really bad.  (Like as bad as it was last spring, and I do NOT want to go back there again!!!!!)  I can’t usually go places, like the grocery store, without help.  I can’t do a lot of things without help anymore.  I feel a lot like a burden on my kids a lot of the time, and often feel the full weight of my limitations as greater than it actually is.  After all, I’m only 50 years old.  This is NOT what I expected I would be like at this age.

Frankly, I thought about the quality of my life this past week in terms of how much it sucked.  I know, I know.  Pollyanna me!  But I mean, if this schedule of chemo, which IS working (thank you GOD!) means that I have 1 good week out of every 3…. gee, I can’t even finish the sentence!  I mean, of course it’s great that we’ve FINALLY gotten the right chemo here!  It’s a freakin’ miracle!  But feeling lousy a lot of the time and not being able to live the quality life I expect and hope for?  Hmmmmm.  Is it a fair trade-off?  I don’t even know!  That’s so sad, isn’t it?

Yes, I have it so much better than so many others:  I have loving support from so many, I have tools to help me do what I want and need to do, I have a roof over my head, and provision for my family, I have so very much.  Lots of blessings to count.  I am grateful!  And yet…..It hurts my heart that sometimes my only motivation for getting out of my bed is the fact that I have to pee.  It hurts my heart that when Emily calls me to check in from California, I spend far too much time complaining about my situation.  It hurts my heart that when Joey needs me to be his “crack down on my senior in high school head and make me do what I’m supposed to be doing” I’m too self-absorbed and feeling lousy to do that.  It hurts my heart that I have to interrupt Taylor’s fall break tomorrow to have her take me to chemo, instead of her really having the break she needs and deserves.  It hurts my heart to look into the mirror, through my swollen eyelids, and see this “I’m on chemo” pixie hair cut I just had done yesterday because my hair is so thin, you can see my scalp through it.  Quality of life…..right now, my reality of that quality is not living up to my expectations.  Not even closely.  And that has simply got to change.

I close this blog with a few shout-outs:  To the kids from USN who participated in the Leukemia and Lymphoma walk to honor their classmate, Hannah, kudos to all of you.  Cancer sucks especially loudly when it hits young people.  Y’all rock!

To Joanna M.:  congratulations on the good news your scans showed, and here’s hoping that crazy blood test simmers down and quits scaring you!  And sincere condolences on the loss of your dear friend, Jen, another warrior on the cancer path.  She left too soon, but her presence is still with you, always.

To Joanie F.:  you amaze me with your continued fight and moxie!  I can’t believe all the twists and turns you’ve been thrown since this recurrence, and yet your spirit keeps on keeping on.  You’re remarkable.  (well, you and Chip!)

And to all the rest of you:  whatever fight you’re fighting, whatever challenges you’re facing, the fact that you’re still in this with ME humbles me and warms me more than I could say.

Peace to all of us in the week ahead,
Teri, The Flying Elephant, seeking quality of life

 

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Responses

  1. Thanks for the prayers- I keep you in mine. Hope you are well!

  2. Hope time is kind to you. Thanks for the opportunity to read and visit for a while. I will keep you in my prayers.
    Cheryl

  3. What an awesome thing to say! Thanks, Connie!

  4. Dearest Teri: Hugs and kisses because I think you need them this week. Just a comment on the remark from Felice of Gilda’s Club: The longer it goes, the harder it gets: that truly sums up not just cancer treatment, but life itself! That’s why Bette Davis said “Getting old ain’t for sissies.” ……..and sure George Gershwin wrote, “Summertime and the living is easy.”…….but no one wrote the REAL life song: “Winter time and the going is tough”……sing, that for a while, Georgie boy! Of course, not everyone enters their fifties walking uphill, both ways, everyday, like you did, but I just want you to know that every step you take is cheered and celebrated by the phantom aunties of the universe…..your friends. Keep on keeping on……..Love….love….love….Connie Butera

  5. So very very sorry for your loss, my friend. May you know comfort and peace. My prayers are with you and your family.

  6. Hi Teri,

    I lost my dear mom a few days ago – aging, illness, etc. – and I find your posts very comforting and spiritually uplifting.

    Thanks for taking care of ‘us’ (your readers), while you, yourself, are on your personal journey!

    Ethan

    _____


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