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:


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.


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.




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.


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.


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.


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.


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.

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



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