IN the ‘Mean’-andering time…

A friend of mine recently posted something that grabbed me in the throat.  Lumpy throats seem to be a common physical reaction that I have these days. The post was this:

living-in-the-meantime

So if I were a man, I suppose it would feel like I had been kicked in the balls!  Ouch!  Mother Mucker!  Here I thought that I had been doing a pretty good job of “staying in the moment” and dealing with our situation with some authenticity.  With that I mean, that I wasn’t walking around moping day in and day out, but I’m not always the bubbly persona that I tend to be either. I thought I was getting real enough with my closest friends and family so that they knew that I was actually doing ok  – considering.

When I read “Let go of what you THOUGHT should happen”; that was the part that I truly wasn’t accepting.

About as “normal” as possible in the meantime…

Ever since Dave was diagnosed with Mylofibrosis and Acute Myloid Leukemia in 2012 our “NORMAL” changed greatly.  While meandering the halls of the hospital during one of the numerous hospital visits, I ran across a friend who was there because his daughter, also a leukemia patient, had recently suffered a relapse.  I deeply sighed and said “Oh Chuck, I just wish things would get back to normal again.”  His reply: “this IS your new normal Susan.  Get used to it.”

BOOM! Man did that ever suck the air right out of me!

I was probably in shock for a while, but I always remembered those words and absorbed the impact of what that really meant.  Somehow, in the past four years, we have learned to adjust to a lifestyle of constant doctor visits and maintaining that life can really muck you up when you are busy doing something else. We accepted that this was going to be our normal.

The thing is….our life DID begin to become a little more normal.  Dave only had to go for a biopsy now after the transplant once a year and follow up blood work maybe 3 times a year.  We could live with that.  And we did!   He also felt better. Gained some weight. Started doing more things. We both held down good paying jobs and began to build a new path in our IT careers.  Things were really going well.  We did a little traveling, we helped out our grown kids when we could, spent lots of time with family and friends, went to concerts, movies, just lived like nuthin’ had happened but always in the background reminding ourselves that CANCER was an active part of our lives.

Our MUCK has changed again…

Zxsheep zxsheep zxsheep zxsheep  zppt zppt zppt (the sound of the tape fast-forwarding)  Here we are in present day 2016.  Dave has pancreatic cancer.  Both of us are unemployed; me almost a year now; him about five months.  We’ve run through unemployment benefits, severance pay, accrued vacation pay, the generosity of friends and the GoFundMe supplemental income and just waiting on his disability to kick in.  I drive for UBER as an independent contractor and barely make minimum wage.  For many reasons, I need to do this for now as we wait to determine the next step in his treatment plan. If I start a new full time job, there’s a chance that his treatment will have to go in another direction.  What do I do once I’m fully employed again in a new job? Perhaps that is a chance I will have to take, since life and bills seems to not give a muck about what is happening in your current state.

THIS IS NOT WHAT I THOUGHT SHOULD HAPPEN IN OUR LIVES

We shouldn’t have to be struggling this hard for everything.  This is wrong, wrong, wrong. We should be building up our retirement fund and making plans.  We should be enjoying our grandkids to the fullest.  We should be past that god-awful survival stage.  Nope this is not how it should be.

 

SCREECH!!!!!

STOP SUE! 

stop-sign stop-sign

The source of my problem isn’t how broke we are.  It isn’t because my husband has a terminal illness.  Even though hopelessness rears its ugly head on a regular basis, this STILL is not my problem.

My problem is the way I think.  My total and utter disgusting thought process has been one of “this shouldn’t be this way – how dare you LIFE – you have mucked up things again”  Waa waa waa – stick a pacifier in my mouth and shut up!

Yes, our life right now kinda sucks.  Ok.  But sitting around with this constant dread and desperation eeking in to MY soul isn’t going to make any of this go away.  If anything, it is exacerbating it.

OK, so how does one accept and live in what is happening today.

  • GRAB ON TO THE MOMENTS IN YOUR LIFE AND LAUGH!

Sometimes I have to shove food and sustenance down my guys throat.  My job is to provide some nutrition for him when ever possible. Living in the moment can be merely recognizing that I have some value to him even if its to make him eat a little macaroni and cheese.  “Here, I think you can eat this” I say as I hand him a kids size bowl of Kraft Mac and Cheese.  His snarky reply, “well I think you can EAT this,” playfully curling up his lip like a little white-faced elf.  I stopped for a millisecond and then giggled and said “good come back Honey.”  I walked away with a smile on my face and check marked this moment as a good one.

  • FOR GOD-SAKES, BE GRATEFUL!

Yesterday, I had to pick up scripts for both of us.  I came to the realization that neither one cost us a dime!  Right now we have free scripts thanks to the American Cancer Society and the Cancer Center of Kansas – they are waiving our costs – FOR NOW.  I don’t know how long this generosity will last, but I imagine that they will re-evaluate our need again soon.  Think about that though; we don’t have to pay anything for some of the healthcare procedures while Dave is undergoing all these treatments.  I believe that is unheard of.  I am immensely grateful for this.  I can’t imagine where we would be if they began to come after us with pitchforks, demanding payment.  Our little 1934 airplane bungalow is safe from being possessed and car payments are being made, and the food stamps are buying us groceries.  So all in all, we are good!  In fact, we are better than good.  We are tremendous!

Every day find something to be grateful for.  It could be as miniscule as finding that the fuschia pink toe nail polish looks simply ravishing on your toes, to the succulent flavor of a perfectly ripened nectarine.  It doesn’t matter what it is…recognize it as a gift of life and be grateful.  Say it out loud and affirm it. Own it. Do NOT even bother with how utterly crazy you might look at that moment.  This is what defines us as people who can accept beauty and be grateful while living in a mirky, mucked up world.

  • SURROUND YOUR SELF WITH POSITIVE PEOPLE

I already regaled in a previous post what wonderful friends I have.  I think as a couple, we are truly, truly blessed.  I make an effort to stay in touch with my friends and family as often as I can.  This is somewhat of a newer, improved Sue.  The old Sue would isolate.  No phone calls would be taken.  NO contact would be made. It was better to suffer alone and not bother anybody.  And God forbid that anyone knew how miserable I was.

Not anymore.  Everybody knows that we are going through a rough time. By merely accepting this fact and allowing others to support us in whatever method they find is the best for them; we take comfort in and grow stronger by welcoming all the good Karma that people want to give us.  Accepting goodness from people is also allowing them to do something for you and feel validated that they are also helping you.  When we do this, it causes a positive rippling effect in the tiny but mighty acts of goodness that we humbly accept. A positive plus a positive equals a POSITIVE.  It’s simple math.  And I HATE math. But I sure like this equation.

  • STAY IN THE MOMENT, BUT MAKE PLANS TOO

Everyday I fight the feeling that I’m losing my existence in a world that has gone flat out, mucking crazy!  I start my day out checking how Dave is feeling and then base my plans off of that. Like I have so many plans!  Hah!  When one has been unemployed for awhile, it’s difficult to make each day become important. Motivation comes in small doses some times but I do manage to find something to do. Everyday, make it count.  In a big way, or a small way, just make it count.  Regretting is so lame.  What’s the point in regretting that you didn’t get something done yesterday? And now you are going to waste a whole lot of energy worrying about and beating yourself up because you didn’t do such and such? PUHLEEZ!   Do what is needed to be done in front of you.  It may be as small as doing the damn dishes, to sitting your ass down to write a damn blog post.  Whatever it is, do it!

And while you do the ordinary, mundane daily stuff, look at your calendar and plan something extra-ordinary.  IN doing this we stay in the moment but always have something to look forward to.  My plans are pretty much based on what can be done on a dime.  That’s ok though.  I find going to festivals, making plans with friends, looking at upcoming events that the g-sons are involved in, and keeping an eye on local websites advertising events to go to keeps me hopeful and alive.  So much better than wallowing in isolation and marinating in self-pity.

So to let go of what is happening right now and living in what is happening right now means these simple things:

  1. LAUGH. Laugh at the little moments.  Lose your breath gaggling over the great moments.  It doesn’t matter.  JUST LAUGH.
  2. BE GRATEFUL.  From the lovely weather of the day, to collapsing your head on the very pillow you lay on, it doesn’t matter.  BE GRATEFUL.
  3. GATHER ROUND POSITIVE PEOPLE.  Allow yourself to use the kindness of others when they want to help.  Stay away from the whiners and angry loudmouths. BE A GOOD FRIEND AND BE POSITIVE TOO.
  4. STAY IN THE MOMENT.  Do what needs to be done NOW.  One foot in front of the other. It doesn’t matter, just do the ‘stuff’. STAY IN THE MOMENT OF THE DAY.
  5. MAKE PLANS.  Call up a friend and plan some thing to do. Mark your calendar for an art festival.  Find a groupon and go see a concert.  It doesn’t matter. MAKE SOME PLANS.
cookie-monster

Thanks Cookie Monster.  You’re my kind of peeps!

 

 

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Whatever gets ya thru the Muck…. An Ode to my Friends

This is an homage to my friendships and a celebration of ALL friendships in kind

We get by with a little help from our friends!  There’s nothing more apropos than this Beatles omen.  Since the challenge that our “new” life has taken on, I will swear by that statement.  Family and Friends.  That’s where’s it at.  Without them, we are sunk!  I wonder in fact, since we began traversing this recent sludgy new muck, that the main reason for WHY we have to trudge it at all is because it has made me become acutely aware of the pure authenticity of my friendships.  These gals (and a couple guys) genuinely care about me (oh yeh, and that other guy).  I think it has also made me aware that I’m not quite as much of an asshole as I thought I was!  I mean after all, if I was truly an asshole and wicked a-ww-ful bitch (in my best “Townie” accent) would I be able to experience the warm embrace of love and support that my/our peeps have shown us?  Without each of you,  I would be fetal everyday, all day!  I pay HOMAGE to you.  It’s my best way of showing you how grateful I am.

Ab Fab

A friendship that has no boundaries… I mean absolutely no boundaries and has “barely” passed the test of time.

 

JO-JO

I have a friend named Jo-Jo.  We’ve known each other for 26 years now.  Our friendship is one of those kinds that endures because we’ve traveled together.  You know how well you get to know another female when you share a bathroom and a bed together?  Yup that’s our friendship.  And she’s seen my vagina!  So there’s that too.  Oh come on!  Get your head out of the muck!  She was there when I gave birth to my youngest, SareyBelle!  She saw me “really open up”!

Jo-Jo calls me or texts me every week to see how I’m doing.  She encourages me to take on little do-it-yourself projects that I never felt I was capable of!  She asks about my kids!  Actually interested in their well-being even though she has kids and g-kids of her own. She has never made me feel like I was less than what I was.  She doesn’t ever judge me, but quietly assesses my dumb choices through shaking her damn head and supporting me.  I feel her love for me and my fella when we are together.  Spending a day sorting through her mothers old clothes and things, or hanging out in her glorious backyard for hours are treasured merely because I got to spend it with her. It feels natural and comfortable to be with her; that’s how warm our friendship is to me. Her Southern roots have opened me up to a whole culture that I have come to understand better through her cherished memories of family and friends and just her damn charm and accent. She has made Dave’s cancer more bearable for me!  I love her.  I want her to know that I can endure things better knowing that she is my best friend AND ALWAYS WILL BE.

KORI

Kori is my newest friendship – January 2012 at work.  It has been a giggle-fest ever since. They made the mistake of putting our cubes near each other!  Even though both of us gals have had a long history of life events and friendships before we met, there seemed to be a connection that came as natural as breathing for us.  I think what really bonded us was me passively, aggressively inviting myself over to her house after work one Friday evening. We proceeded to sip our vodkas out on her patio and became “vulnerable” with each other.  Now I don’t know how most women feel about allowing the floodgates to trickle through, but apparently it was just what we both needed.  Maybe it was the “new blood, new ears” approach of telling our tales of woe to each other; whatever it was, it felt great.

I think I really took a chance with Kori.  Once you reach a certain age, forming new female friendships seems to be harder.  I think it has to do with trust issues and all the mucking garbage that has been dumpster-dived in our lives already.  At least that’s how it was for me.  I approached, she responded.  It’s been bliss ever since.  She is my voice of reason. Sometimes the brilliance of her coo-coo mind makes me take a moment and realize that I still have some living to do and not to give up.  I have allowed Kori to know and see me at my ugliest…that is in thoughts and emotions…and although I at times have concerned her, I know that she wants me to “SNAP OUT OF IT” and be the better Sue that I am.  Going to Kori’s house is like a mini-vacation for me.  I breathe again.  I just am again.  Heck I’ve even taken a bath at her house and know where shit is!  Now that’s something.  She also texts me often.  Sometimes its wacky; but most times it’s making sure that I’m ok.  She even wants my future to be ok.  She’s not gonna give up on me.  I know that.  And every month when the moon is full, I think of her.  Somehow we have become Moon Sisters and honored that she loves me.  I love her too!

LUCY

Lucy should be spelled A-N-G-E-L.  That’s what Lucy has been to me.  We met working out at a gym some 20 years ago here in Wichita.  Our youngest daughters nearly share the same birthday. I brag that I have a British friend and her name is Xena!  Actually she looks a little bit like Xena.  Certainly tries to act like Xena.  In fact, her heart is as big and as cool as Xenas.  She’s an Amazonian Warrior Goddess that is altogether beautiful, ballsy and blimey at once!  She knows some dark history about me that I feel pretty confident she hasn’t shared with anyone, unless it was with that dote of a hubby of hers -Martyn.  In that case, it’s ok.   I just know that Lucy was there for me during an especially dumb time in my life, sans judgment but bearing compassion.  We shared some extremely goofy times together usually involving either laughing at our children, getting slobbered on by huge dogs, or consuming alcohol.  Even though she has lived in Bristol, England for quite some time now, I feel a deep bond to her even today.  She has helped Dave and I understand some of the interwoven mesh that involves bone marrow transplantation and I’ve currently consulted her on the mucky pancreatic cancer that Dave is going through now.  Lucy tells me like it is, but softly envelops it with love and kindness. The way she treats me may NOT be extraordinary to those who also know and love her, because Lucy has this uncanny way of treating EVERYONE with love, compassion and zaniness.  But I FEEL special when she showers her love on me! It is common knowledge that the cancer patient usually is the one that gets the most deserved attention.  Lucy reminded me that sometimes the caregiver needs a little TLC too by surprising me with a glorious care package of “bits and bobs” that she so lovingly sent to just lil ole me!  That’s Lucy.  In a package.

Lucy and I live worlds apart.  She is globally connected, well-traveled and a mega-ton more experienced in EVERYTHING than I am. I’m virtually – globally connected, North American traveled and probably more Jimi Hendrix experienced than she is.  Somehow though, our friendship has endured 4,424 miles (that’s 7119.738 kilometers for our dear Brits calculations) PLUS 20 years.  I know one day I will hop that pond and stay with her for a short time.  It will be like just like the day we were standing on the outside of the gym’s childcare window…I asked her which child was hers.  She replied in her fast, delightful accent, “the one with the green snot standing next to yours.”  I love Lucy!

MERNIE (Marilyn)

Mernie,  who doesn’t like Bernie…hee hee is another very long time friend whom I met back in 1983!  The very first female friend that I met on my own volition while doing ab crunches at the old YWCA.  She quickly became not only an excellent partying buddy, but a confidante too.  We have so much “interesting” history together,  that we could easily blackmail each other if we were desperate.  Of course that will never happen.  She’s been a soft voice in my life when I felt like I was really going to lose it. One time while we were sitting out by her pool and partaking in some delectable herbs I became emotional. Some of this reaction was in part due to my system not being used to the delicacy.  I told her I was afraid of being alone in my old age and didn’t know what I would do. (This came at a time when our future looked rather bleak.)  Without hesitation she said in that sweet Barbie-Doll voice of hers “oh Susie, I’ll take care of you!” Chokes me up to this day when I repeat that!

She has put me in my place a couple times – both incidents over a man.  It was much needed discipline for me, but of course, I didn’t realize it at the time.  When I think about this, I now know that she truly cared about me and wanted me to be alright and see the err of my ways.  Mernie made my first baby crib set for my little Katy  – completely hand sewn! I was totally in awe of someone doing something that special for me.  I still have that quilt, pillow, diaper bag and bumper pads and will always, always treasure it.  Through all of Mernie’s travels with railroader hubby, we never once lost touch.  Somehow we managed to converse semi-regularly no matter where she lived.  I think I have visited her in at least 4 different cities. And when I need a last minute lift from the airport in DFW because of stupid airlines…she doesn’t hesitate!  Or needing a house to stay in because airline services cancelled flights because of snow storms…her house was available.  I love my Mernie and I will need some of that fine Texas hospitality soon again.

COUSINS

I have been fortunate enough to have some girl cousins that I grew up with who were like the best playmates a kid could have.  And then divorce happened!  Both of our parents destroyed our lives!  (that statement was more for dramatic effect).  In a sense though, when both our folks divorced, the kids ended up dispersing to other parts of the country.  Hence,  almost 40 years of distance took us apart. Thank the Gods for Facebook!  Finding my cousins through first FB and then a family reunion made me understand who I was.  I was a part of this big, wacky, loving family that had all kinds of ideas and opinions and cultures and ways of life converging all under one family name – PONTON.  Ancestry.com has got nuthin’ on us.  We already know that many beautiful leaves have become us from this very tree.  I can’t say enough how much my cousins nurturing words of strength and understanding have done for me.  I want all  of them to know how truly how blessed I feel to have you as REAL family, my cousins. I love you Ladies.  You mean more to me than you know.  And not to slight the menfolk and men cousins that are attached to you,  – please know that if I mentioned one of you ladies…then your mate or brother means that much to me too.

Deb, Michelle (Mickey) w/Mike, Co -w/Cousin Dan; Stacey, Amy & Nikki – w/your fellas & bros; Anto w/Cousin Andy; Elaine w/Cousin Mark and Mary – all little leaves and sprouts from the Ponton clan.  

THE CHURCH LADIES – well isn’t that special?

Regardless of where my faith has taken me, some of the most solid and endearing friendships that I have encountered has to be the Church Ladies that I have met.  Our friendships have withstood the test of time, changing ministers, Youth groups, sanctimonious sanctuary sluts, and the common awe we feel watching each others kids have kids creating lives of their own.  I may not always be around these ladies.  I might not even talk to them for weeks, MONTHS even; but it doesn’t matter, they are there always with a hug, a smile, a familiarity that they know ME and my cray-cray ways and they still love me.  In fact these are the ladies that I will ALWAYS include when I’m wanting to have a ladies night out.  Yup the old Church broads that have known me and my girls since Jesus was a kid!  Some of your children babysat my children.  I love them and there’s no part of me that wouldn’t be ME if I hadn’t formed these bonds with these gals oh so many years ago.  I love these ladies and I know they love and adore me and my Dave. I have experienced this first hand in so many ways through cash, (yes showing up at my doorstep with cash for me) wine, food, wine, hugs, prayers,  – oh and wine!  One day I will truly need them and their unwavering faith and strength to see me through maybe even rougher days ahead.  This doesn’t scare me so much knowing that they already have my back.

All my LOVE…

Cheers Dana, Cindi, Clairissa, BrendaPam and Linda. And I miss you Darcy – still all the time!

CHILDHOOD, HIGH SCHOOL, COLLEGE & SINGLE LADY DAYS

Fact! Facebook finds friends!  That’s a triple muckin’ “F”!  I don’t know who hasn’t benefited from Facebook when finding long-lost somebodys.  Personally, I have reconnected with childhood besties, high school girlfriends, college roomies and young adult gal pals.  I can’t thank Mark Zuckerberg enough for his concept that virtually brought old memories to the forefront of our hearts and our minds. It has been one of my greatest joys to re-live those old times when we were all very different people and then connect and bond all over again some gazillion years later!  I feel especially lucky to know that as adults – some of these women have truly become loving, great people.  At first I was a little intimidated reconnecting with some of these gals.  I mean look at their life compared to mine!  Right? Oh she has had an incredible life.  I can’t even relate!  Bullshit!

The gals that I have been able to reconnect with after many, many years apart have made my life so much more complete.  Not only have we had some small history together, but we are able to carry our love connection into this century again through good ole FB!  I’ve shared some tears with you as of recently my dears, followed up by some life-energizing hugs. You have given me such joyful thoughts with your love.

to name a few…old childhood,  high school buds, former roomies and young adult pals…Becky S-H, Laurie N, Lori C and Lori M, Julie J, Teri C-O, Kathy L, Kate D-J, Janis D, Katy B-H, Nancy L-J, Kris R S, Barb Z, Tracey C T and Tracy B, Rene B-K, Cindy, and the fellas – Skip H, Jeff P, Dave F, Kelley P and Mark W…

Thank you FACEBOOK FRIENDS

And now a word about the Facebook friends I’ve made…YOU genuinely have continued to send positive thoughts, solid prayerful wishes and just simple loving conversations to me and Dave on a regular basis.  In my daily life, checking Facebook often is the source of sustenance for me. (on the flipside, it can also send me plunging into the darkness of despair, frustration or disgust too. – but that’s another blog post for another time.)  I feel at that moment that you are really thinking of me; truly showing concern and lifting me up even if I never lay eyes on you at any time in the near future.  I know who YOU are. I know that YOU care.  I need YOU maybe more than YOU need me.

I would love to begin listing names here, and give proper due, but I know that my good intentions and my shriveled up brain might forget someone.  I would never want to hurt anyone because I forgot a name.  I have confidence in YOU  because you are great peoples with integrity and YOU know who YOU are.  YOU are the ones that took a moment to tell us that YOU love us.  YOU laughed at one of our jokes.  YOU shared something with us that YOU knew would make us laugh (not just a general share, but a more personal share). YOU asked us if we needed something.  YOU personal messaged us just to see how we are doing.  YOU offered to let us stay at YOUR house.  YOU offered a shoulder to cry on if we ever needed. YOU said YOU were praying for us, NOT just flippantly saying “praying for you” (I believe YOU when YOU say YOU are.) And YOU didn’t care what we posted, YOU were still our friends, even if we said something YOU didn’t agree with. We are connected either through another friend, an organization, work or the wind!  I thank you for your continuing support.

To all my Facebook friends, newly friended and “golden”  – I love you all.  With your help both Dave and I keep plugging away trying to stay strong and mostly positive; accept your most gracious gifts and be good stewards of the support you have given us. We do want to be an inspiration to any who want to learn about us.  We want all to know that there is no way in this gargantuan Earth of ours could we ever have made it this far if it wasn’t for the help of our friends.

Yes, we’ll get by with a little help from our friends.  

 

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