Being sick opened my eyes…

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Kill me now, please…

I am slowly recovering from being sick. Been out of commission for a couple years now. Well it certainly seems like that long.  I’ve lost all concept of time.  I realize I’m not special.  Everyone gets sick.  My husband is sick, or doesn’t feel good, at least five days out of seven dealing with pancreatic cancer.  He can tell you about not feeling good.

Since being sick I have come to realize how strong my husband is.


I was dog sick. (poor doggy) I wallowed in the muck of my sick sheets, sick clothes, (changing four or five times a night breaking the fever I had) sick air that I breathed, (dousing the vaporizer with peppermint oil to breathe better; and smell better) matted hair, piles of tissues mounding in the trash, gagging, coughing, hacking, vomiting, vile things coming out of my body…mucking, disgusting ickyness of sick.   Pretty picture huh?

I was delirious for at least two days not remembering conversations I had.  I continued to lie next to my poor husband whose immune system is negative 0; wailing and whining while being a major wuss!  He finally moved down in to the guest room where I should have taken my germy self in the first place.  I cannot explain how much guilt I felt once I collected my senses why I didn’t take better precautions around Dave.

There was a few hours where my fever shot up, my body ached constantly, I coughed so hard my ribs felt like they cracked and I vomited out nothing till the veins in my neck popped and strained so hard. I thought I was dying.  I felt alone and actually wished I could die.  I knew Dave couldn’t help me either.  His poor frail body was fighting his last chemo invasion.  This was “chemo week” which meant three days of chemo infusions and pump, followed by three days of feeling like pure shit for him. How could I depend on him for help?

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I was in trouble.  I knew that I was unable to take care of him, let alone myself.

I had to get help.


One by one my daughters popped in from their own busy lives, to assist in some small way with meds, finger foods, rubbing my back, bringing essential oils, refilling our drinks…all that good nurturing stuff.  I had dear, sweet friends make a grocery run for Ensure, Pedialytes and Gods gift to every bum in the world – flushable wet wipes!!  At least we were going to have liquid nutrition in our bodies and gently tendered bottoms.  A good, good, beautiful, wonderful friend finally took me to the doctor, helped me do all our laundry and bedding at a mucky laundry mat and vacuumed our carpets.

I cannot tell you what that meant to me.

We have the greatest family and friends in the world.  NO!  I’m sorry.  You may think you do, but I know for a fact that WE DO.  So shut it … now.

I was going to LIVE.  We were going to be alright! This was going to pass.  I am going to get better. I will be able to go to the store, cook, clean, garden, write, care for my grandsons, drink wine, hang with my crazies, –  all the things I love to do –  I will be well enough to do them again.  Soon.  All I had was the flu, an infection and some serious bronchitis.  Totally treatable.  With time all my symptoms will go away if I take care of myself.

But what about Dave?


With my faculties restored to some degree, I reflect upon my own experience and realize that my husband is a mutha-muckin’ badass! 

I endured maybe eight days or so of feeling puny.  My husband endures endless days of feeling puny.  He mires in a muck that none of us can ever imagine.  He knows what’s ahead of him every day that he wakes up.  Perhaps today he will move from the couch to sit in the sunshine for an hour or even feel strong enough to walk around the block. That will challenge him enough for one day.

Tomorrow he may jump in the car, go to the store, bring home coffee creamer and stuff to make “frankenpizzas” because what the hell?  He will then proceed to make “said pizzas” and they are WONDERFUL! 

Other days he will lay on the couch wrapped up in his robe, a blanket over him, snuggling pillows around him to try to stay warm, the familiar pallor to his skin, the sunken jaws, his mouth open, and what makes my heart stop a little every time – the coolness of his skin. Some days words are not needed.  His body, tiny and frail, arms folded tight to his chest, wearing that ole navy blue robe, moves slowly to the bathroom for perhaps the 20th time today.  The pain etched across his forehead is enough to express that this is NOT A GOOD DAY.  This is the fight that he has day in and day out with his illness.


Some days he is in the present and tossing “Chanoisms” at me, venting about our government and excited like a kid at Toys R Us about his latest vinyl treasure he is going to digitize.  Other days, I barely recognize the fella with the sultry green eyes that rocked my socks with his “In-A-Gadda-Da-Vida” drum solo.

Dave w_Chiefs hat

This may be hard to read for some, but this is our reality.  The gift of being sick gave ME a chance to reflect on how brave and strong my Dave is.

He is Brave. He is my Braveheart.  He is like The Brave Little Toaster. I live with him in our Home of the Brave. He is always Running Brave.  He is None but the Brave.  You see, The Brave Don’t Cry, even though there is No Rest for the Brave.  He will always be The Brave One.

HE IS The Brave.


What makes a person continue to endure the most unpleasant physicality knowing that they are going to feel just plain, ole shitty no matter what?  Where does this courage come from?  Dave will probably tell you it came from his Mom.  I don’t doubt that a second.  I would like to think my own mother as a courageous, brave woman who has withstood a plethora of painful maladies to her body.

Some folks are loaded up with Jesus and good ole God-fearing FAITH.  They believe that their faith allows them to go through physical ailments because they are promised a path of light and love in exchange for the pain.  After all, Jesus sustained the ultimate in physical pain.  Experiencing pain by calling upon your faith might be considered facing the pain with dignity.  (probably right here is where I might lose a lot of ya)

Perhaps knowing the pain will eventually go away makes a person forge through till they get to the other side.  Armed with knowledge, a time-stamp and a proposed plan could make even the wimpiest of wimps become a mutha-muckin’ badass as long as they knew what was going to happen.

Wounded soldiers and injured athletes; birthing mothers; tortured prisoners – how does one deal with that sort of pain?  Everybody’s brain works differently.  Everybody’s mental state is affected differently.  The pain that is introduced varies in levels.  That threshold could be way down here or catapulted through the roof.  I don’t know damn it! What? Do I look like a scientist?  All I know is that I experienced some physical pain temporarily.  This made me appreciate and honor my Darling man for everything that he goes through on a daily basis to fight this mucking cancer that continues to meander through his body.

As long as I have breath in my bones, I will help him kick CANCER’s ass.  I will try to take better care of myself and value even more the days that I get to share with him.  Always.

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Sometimes ya just have to say “MUCK IT”!



This is not going to be an inspiring, feel gooey, love post.

Nope.  This is going to be raw and bleeding; angry and infectious. This is going to ooze the pus and muck of a mind that has absorbed and sustained all the darkness and vile that it can take.

This is ME right at this moment.  Non-medicated and at the end of my ropes.  Once this has been written and the sunrise of a new day is upon me, I will either be embarrassed or regretful for spewing out these words, but I will be a better, healthier person for it.  Perhaps I will have helped someone who may be feeling the same way.  There will be some folks who will read this and be frightened for my sanity and well-being.  NO matter.  I still say MUCK IT!



Over the course of this past year I have been living in a personal nightmare the magnitude and proportion that I perceive as gargantuan.  Perhaps a child of Aleppo, or the families of children who were shot dead by police officers, or the families of police officers who were shot dead by citizens will look at my personal drama and tragedies and say “hah, you call that a nightmare?”  It is all in the perception of one’s own mind, though isn’t it?

Therefore, I will keep in mind as I proceed with this post that there are others living in crises far worse than mine.  I will acknowledge their pain and ache for their travesties.  I am not heartless, only lacking in a point of reference to their situations.  So, I will allow myself as this is MY post to extrapolate on all that has killed my soul this past year.


I have watched my Love, my burning, warm Candle, my Mate, my Fella, diminish into a frail little man. By no fault of his own, his disease has eaten away at his body, hindered his mind and is trying to battle Thunder Dome status of his spirit. ‘Two men enter, one man leaves.’  Thankfully, his spirit is the champion of that battle and thus far, he has come out victorious.

Everything that use to be Sue and Dave is no more.  I know that sounds so sad. It is.  We are not THAT Sue and Dave anymore.  My memories of THAT Sue and Dave are long and sweet and I hold them so tenderly to my heart.  I still have vivid pictures in my eyes right now of many moments of giggling, passion, contentment, touching, rolling eyes, disgruntled sighs, passive aggressive, supportive, sweet, sweet, tenderness and dorkiness.  I can’t share all our moments because that’s for US.  That’s my gift that I will get to keep long after we are no longer together.  I’ll pull one of those moments out when I will long for his smell and touch and stupid face. I’ll pull one of those memories out and squeeze it to my neck until the ache passes and I can move on again.

I have spent the past year it seems in constant sadness.  It is almost like having a part of your body that is permanently broken; but just a little.  Just enough broken that you are always aware of it, yet you can still function as a normal, breathing, walking upright human being.  I function fairly well I think.  Some days though it feels like “barely functioning”.  I mean how many times can a person cry for Godsakes in a day, in a week?  Don’t tears ever run out?  Shouldn’t I be losing massive amounts of weight from all this crying?  What?  No?  NO FAIR!!  But that’s just it.  Mother MUCKIN LIFE isn’t fair, is it?

I am slowly losing my mate.  Not today.  Not tomorrow.  But one day, HE will move on from this Earth.  We won’t be Sue and Dave anymore.  WE will be ME – SUE.  *big, huge sigh*

I realize that we all must die.  Some of us haven’t had the opportunity to know that our time is short.  Or some of us do and it still matters not.  Maybe I have wasted a lot of this past year acclimating to his sickness and the change in our roles as a couple; when I should be focusing on making more memories and loving every damn day that I have with that man.  I guess I have been stuck in my muck more days this past year, wasting away with sadness.  I should have done better to cling to the fact that I HAVE these days to be with that sweet POLOCK, and stop being so mucking sad.  It will be my challenge and honor though this next year to do better at this.

But hey, I’m still furious at how this past year has chewed us up to the marrow.  (speaking of marrow…that’s the culprit right there.  Marrow was the catalyst to all the shitty muck in the first place.  Asshole Marrow!  Muck YOU!)

How does a couple who battled the Mylofibrosis/Acute Myloid Leukemia over four years come out WINNING only to have pancreatic cancer grip its bony, slimy fingers around our throats and say “not so fast, assholes!”   Muck you!  I hate you cancer!  I wish that your mother would get anal cancerous warts.  That’s how much I hate you cancer.  How’s that for vile?

I find myself slithering down upon the floor when I feel like this at times.  The anger and sadness gel together in to one wretched emotion.  It is those times when I think I might not be able to deal with anything else.  Strangely though, I do.  Every gawddang time.


I miss being a career woman with a purpose.  I miss using my mind analytically.  I definitely miss having an above average median income.  I miss seeing my retirement fund grow.  I MISS HAVING A RETIREMENT FUND and that security that went with having one. I miss that security I had giving my kids a $100 now and then or splurging on some small item for the house, never worrying what I did would make us overdraw in the account.  I miss having thousands rather than a few hundred in a savings account.  I miss having the doable dreams of buying airfare tickets overseas, a $3000 used Harley I had my eye on, and the cabana bungalow that I rented in Belize as a surprise to my sweetie, that I had to cancel.  For me, losing my job feels like it happened just last month rather than just last year.  One of my many scars that still feels fresh and raw.  Even though everything I just mentioned was about money; and we all know money can’t make you happy, it did give me a sense of security and hope.  I had small dreams that would easily materialize for us, if I continued with some fortitude.  Cargill sold me out. Cargill sucked all the marrow out of my bones, that’s for sure.  Muck you Cargill.  I hate you too!

I am livid about the future of our country.  There are days I can barely even read FB posts, Twitter trending moments, watching the news or even listening to people talk.  I’m scared.  I feel like I am going to lose my mind.  Perhaps I am losing my mind.  How can this country be so mucked up?  How can this country also be so wonderful?  What an oxymoron!  What a moron that is going to run this country!  What morons there are in this country!  God help us all!



I am deeply saddened by all those who have died this year.  My Lord!  Why?  The list of famous people who have died influenced us for generations.  Their testimonies revealed the brutalities never known until they opened our eyes, their music and lyrics carry tunes of our lives through our minds, their movies will keep us entertained for years to come, their books, their fashion, their bravery and courage, their athleticism and political leadership will ever be a mark in our memories. I implore you, LOOK at that list.  It spans almost every aspect of life you can imagine.

There have been some shocking deaths of people I knew this year that personally have taken my breath away too.  I grapple with those and find it hard to understand when I think of their families still having to carry on without them.

I think what is happening to me lately because of the overwhelming parody of crap that has happened this past year is the awakening fact that I am no longer a nice person.  My filters were thin already, but now I seem to have none at all.  I cannot stand pettiness.  I flee from phoniness pronto. Ignorance? Get all the sharp objects miles away from me. I cannot tolerate intolerance.  I get very judgy on judgementalism.  I’m a pair of handcuffs away from any act of violence right now.  I carry a green heart.  I can no longer gaze at the pristine beach shots of those of you that selfishly post with abandon while gloriously lounging upon them.  How dare you have the means and time to voraciously travel to luscious destinations beyond my own abilities that you so earnestly deserve!   I do not care anymore that you are sipping on a Mai Tai in Tahiti.  My tender, envious heart won’t allow me to like, laugh or give you even a mere thumbs up.  I no longer have the capacity to be happy about your good fortune to travel and get the muck away for your droll life while I am still stuck here in deep doo-doo in DooDah.  How’s that for ugly?

I’m mad as hell.  I’m sick of my life.  I’m sick of people.  I am frustrated with our country.  I’m just mucking overwhelmed with EVERYTHING.  I AM SHOUTING!  AAARGH! SHIT! HELL! DAMN! POOP!

Whew.  Breeeeeathe.


I feel like I am losing at life.  And yet, – no.  My dilapidated house is still vibrant with Christmas color and decorations.  It’s messy. Again.  There’s actual good food in my fridge right now.  Some weeks it’s bare and we get on with our Ramen Noodle or Baked Potato evenings.

I can still pick up the phone and hear the real, live voices of my elderly mother and father, who are so sweet and dear to me right now.  I’m a shit daughter who hasn’t always given my all to them, but damn I’m lucky that I still have them around.  I’m scared that I will be losing them soon too because it is all about the circle of Life and that’s a reality.  I must stop fearing that life’s timing is not my own.  I’ll never be able to control when the Universe decides that it is time to call someone in to Her arms.


I don’t care what you say about your kids, but my daughters are the best!  Each one of them gives me love, warmth and encouragement in their own way. They are actually looking out for me, their ole Mom.  Amazing isn’t it? They are all in the same city right now and I damn well better cherish that before they get brave and realize that their own life adventures are a gas tank and a plane ticket away.  I have tried to encourage them to get the muck out of DooDah, while secretly at the same time hoping they don’t.  Twisted, conflicted, love of a mother; that’s what that is.


Through all the cesspool of sewage that I have dealt with this past year, I cannot walk, talk or breathe without remembering the pure goodness of the friends that I have. This includes my sister as well.  Those women (mostly) who have called me, texted me, or post things to me only because they were thinking of me.  They have told me that they love me, hugged me, let me weep and ugly cry to their faces; they have sent me money when I didn’t ask just because that’s who they are; they have been my voice of reason when I couldn’t hold a clear thought in my head; they’ve bought me wine and let me just hang around and take up space.  They have never forgotten me.  I have to remind myself of this…the greatest of all my blessings, especially when I feel so utterly defeated and alone, that they are just a phone call away.  And they like me.  They actually, really do like me.  I don’t know why.  For all the reasons I have stated above about my horrible self, they still care about me.  God help them.  GOD LOVE THEM.

I have spewed enough venomous spittle for one day now.  I will take my meds, go do some dishes, wash my hair,  brush my teeth.  Spend some loving time with that dork of a Polock in the hospital today and be glad.

That is all.

Meandering in the Mattress


Laying in bed depression

There’s an old saying: ”when Momma’s not happy, ain’t nobody happy.”  Embarrassingly I carried this anthem into two households.  I don’t know why my unhappiness affected the rest of my family when I was married; and now affects my current household, but I am beginning to discover many things about myself that I would love to share, if you have some time to kill.

I think I have always been the kind of person that loves really hard, takes things really hard and finally falls face mucking first really hard into the muckedy muck muck of my muck.

Therefore, I will get real ooey gooey honest and tell it like it is.  Those that judge or wanna be peeping into someone else’s crisis can mosey and meander on down the road.  This is real life, no-joke, mental health issues that I am discovering doesn’t just affect LIL OLE ME; there are thousands of people that suffer from this condition too.


Yep, depression is completely debilitating and can impact even the smallest pleasures in life.

My bout of living in the darkness occurred recently. Usually I have a one day ‘stay-in-bed-watching-crap-and-eating-crap’ session about once a month.  If I have to be honest, something almost always triggers it, but at the time, I don’t really know what it is. I find myself completely devoid of any emotions and motivation.  There’s always tons of stuff that I need to do, but I cannot find a way through the density of gloom to do anything. If by chance I allow the cork to pop and the floodgates to open, then I’m in trouble. When these incidents happen, God Bless the men and children in my life, as they just meander on through their daily routine and hope that I come out of the shrouded mist and ascend into the light again. And I always do – where tasks get done, food is cooked, hugs and smiles are distributed and everyone sighs with relief.  Momma is back!

The reason I am writing this is that I hope I allow others to recognize that this ‘phenomenon’ happens to many, many people.  I believed for years that it was my cross to bear, my mucked up genes, traveling back to at least three generations.  I felt alone and very messed up.  Am I really this flawed that I cannot even manage to brush my teeth or shower?  Here comes some real muck…this last time, I went from late Saturday evening, to Tuesday morning where I didn’t shower or brush my teeth.  YES. Gross! Gag!  I know.  Right?  Pretty bad, except there are others that have gone longer without performing basic hygiene, ON PURPOSE, because they just can’t!  It’s devastating to think about it.

Well, we are NOT alone.  I recently had conversations with two of my closest friends who admitted that they had been doing the very same thing.  WHAT?  For real?

We are all drowning in our beds, developing gingivitis, chomping on crap and feeling as blue and faded as your Daddy’s best jeans, Denim blue fading up to the sky. And the patches make the goodbye harder still. Ah Cat!

I digress.

When I learned that these women whom I love deeply were experiencing the same damn blackness that I was, I knew I had to find out if this really is a ‘thing’.

If you search phrases like:

  • laying in bed all day
  • staying in bed all day depression
  • why do we lay around in bed when we are depressed?

You will find a treasure of advice, testimonies, forums, support, and psychological jargon to explain away all the nuances of experiencing depression.

I was floored to discover hundreds of people take to bed for a myriad of reasons, but only one common denominator – DEPRESSION.  It’s such an overused clinical word that packs a huge wallop.


We might feel like we are broken because of this malady, but it doesn’t just get fixed in a day like a car repair.  I found an article in Huffington Post where Dr. John F. Greden, the executive director of the University of Michigan Comprehensive Depression Center explained it like this: “Depression can make people feel like their minds have completely rebelled against them. The hard truth is, depression is not the sort of thing you can just wake up and be over one morning.” He explains about it being cyclical similar to lunar cycles, menstrual cycles and motorcycles.  Particularly Harleys!  HAH!

Each person cycles through their days and nights grinding through work, kids, school, social life and doing pretty darn ok with life on life’s terms.  And then KA-POW.  The bed becomes the refuge against the big, bad world.

The good doctor furthers encourages, “It’s not a moral shortcoming. It’s not something people brought on themselves. And understanding that is a pretty powerful beginning to helping a loved one with depression. At the end of the day we have to decide if we are going to let this nasty illness beat us and take over our lives, yes we have some good days and lots of bad days, but stay strong and don’t let anxiety win.”

Easier said than done huh?


Some of us handle depression OUT of the bed.  We drink. We smoke. We eat. We have lots of sex. We pop pills. We yell at people. We enable people. We are co-dependent.  We never relax. We go, go, GO.  We DENY.  Pick one.  Sometimes we are so overwhelmed by how underwhelming we feel as a person, the bed beckons us, guiding us towards the reefs and rocks like Calypso’s sirens.  Rather than navigate through the rough waters of our lives, we find that we must crash.

So I dug even deeper and found another article that focused on different aspects of why people hunker down under blankets.

Reading this article got me asking questions. How do we lose that desire to pursue goals in the first place?  What about moods?  Again isn’t moodiness kind of cyclic too? High moods keep the wheels churning.  Low moods slow down the progress. What happens when we hit a wall towards that goal?  A big fat obstacle smacks us down.  But we’re tough bitches, right? We keep pluggin’ away.  We re-route, redirect, reevaluate and try again.  But damn it to hell, that muckin’ goal is still out of reach. Uh oh, here comes a low mood because the effort has drained the batteries of our energies and once again, the bed gestures to us like a ripple in the wind. Or like the ripples of Joe Manganiello’s abs. Well perhaps not THAT inviting. I’m too depressed to even enjoy Joe at this point.  Go away Joe!


Even Joe can’t get me out of bed

Needless to say, moods, goals and efforts do align with whether we end up mattress-bound or not.

Another smart dude, Jonathan Rottenberg, an Associate Professor of Psychology at the University of South Florida, where he directs the Mood and Emotion Laboratory, summed up this whole theory that had me saying ‘ah hah’. According to Rottenberg, “depressed people don’t end up lying in bed because they are under-committed to goals. They end up lying in bed because they are overcommitted to goals that are failing badly. The idea that depressed people cannot disengage efforts from failure is a relatively new theory.”

This next quote hit home for me.  “It [this theory] fits well clinically with the kinds of situations that often precipitate serious depression — the battered wife who cannot bring herself to leave her troubled marriage, the seriously injured athlete who cannot bring himself to retire, the laid off employee who cannot bring herself to abandon her chosen career despite a lack of positions in her line of work. Seeing these depressions in terms of unreachable goals may be useful clinically, and may help us better understand how ordinary low moods can escalate into incapacitating bouts of depression.”

Yessir.  I’m one of those people. The employee.  The over-weight, middle-aged, out-of-work woman whose Love and Soulmate is battling cancer.  Of course I’m depressed. DUH! And ya know what?  This ain’t my first rodeo.  I’ve carried this around like a precious brooch heirloom.  I pin it on the underside of my lapel so it’s not exposed to the public but it’s presence nags at me and reminds me that I am a Ponton woman.  I love how one gal explained how her depression is a family thing: “And it’s just the way it is with me. My family tree is poisoned with melancholy right down to the roots. Some of us manage our depression through alcohol or pot. Some of us don’t manage it at all, just wallow in it while simultaneously denying its existence.”


I do the best I can with what I have to work with.  I do small projects around my house that actually gives me joy and purpose.  I hang with Dave and laugh at all his silly Chano-isms because I do love him. I go to doctor appointments because I know it makes him feel like he’s not alone.  I make sure that I keep in contact with my daughters.  I have regular Meema time with my grandsons.  I started walking (FINALLY). As I mention this, I realize that I didn’t feel like walking for a long time because I was depressed.  So there ya go…cycle. I make sure that I spend time with friends and plan small outings when I can. I try to keep up with my aging parents and make memories with them that will last me through when their time comes to dance off this Earth.  I listen to music, watch movies, read, blog, drive, meander around in my garden…  Hmm.  I guess I’m doing ok.  Today I can say that. Last week I couldn’t even form the words to express how I felt.  One person said in the research I did, “My depression doesn’t feel like sadness, anyway; it feels like a void, an absence of emotion. I don’t feel joyful or devastated. I feel nothing, except maybe exhausted.”  Wow!  That also rang crisp and clear in my heart, because sometimes I do have a dull, sad ache in my heart; but other times I feel absolutely nothing and completely spent.


Serenity is just a backyard away


If you have read this all the way through … congratulations and THANK YOU … I hope this helps.  I want people to know that YOU ARE NOT ALONE.  We will hunt you down and kick your ass.  Well the depression will.  But don’t kick your own ass for doing this.  Allow yourself a day here or there.  If you’re coming up on the third day of wedded bliss with your bed, well then I might have to hunt you down and kick your ass.

In the meantime, I say to my sister friends, text me!  Let me text you!  When the blues begin to consume us, we need to send out an S.O.S… Take a minute from marinating in the mattress and simply say, “I’m in bed. I’m ok, but I feel crippled.”  That’s it.  We aren’t asking help to get us out of there so much as merely taking some ownership of our situation and letting someone else know that we are not alone in this.  That gets us out of the basement of our soul knowing that the sunlight will once again warm us back into the world.

No one should ever have to meander through their muck alone.

Love and Light

OTHER INFORMATIVE LINKS (and one not so informative, but rather funny)


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!



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.



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 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 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.


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. 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!


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…


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.  


Bottom of the barrel muck

Sometimes it is very good to be left alone in your own pain.

I’m talking about the kind of pain that makes your stomach hurt and you know that if you cry, if you howl, if you moan… and release it, you might not come back.

The kind of pain only you could have placed upon yourself, because if it was bestowed upon you by someone else, you could easily spew the vileness of the pain to another person and be done with it.

The kind of pain where the  scabs and the scars can forever be found in the mirror.

The kind of pain that ruminates inside your head running the tape back in your mind

The kind of pain that flashes in the images – more muted now as hours go by, but some of them raw and fresh and realtime, haunting you as they play their scenes out again, and again.

The kind of pain where there is no need to physically hurt yourself .  Your pain cuts deep enough, no cutter would ignore it.

It’s good sometimes to experience emotional pain all alone, not a soul knowing what you’re going through.   It allows you a chance to marinate for a moment in the fowlest, skankiest bottom of that putrid barrel.

In this world nothing happens to a person the he/she does not for some reason or other DESERVE.  It’s called KARMA baby.  And it’s a mother – mucker.

“I am the owner of my karma .
I inherit my karma.
I am born of my karma.
I am related to my karma.
I live supported by my karma.

 Whatever karma I create, whether good or evil, that I shall inherit.”….The Buddha, Anguttara Nikaya

Well that’s comforting!

That means I can turn this around.





Absent but still very present…

It’s been ages since I’ve posted anything lately.  My desire to write and journal this journey swings like a pendulum.  I don’t exactly know what position I am today- UP or DOWN.  I do know though that I’ve been alone here in Wichita while my Love, David has been recuperating up in Lenexa, KS.  He has been under the perfect care of his mother.  I mean, come on-what Mother wouldn’t be the best person to care for you-no matter what age you are?!

Dave and his mother Connie

I began a job here in Wichita July 2nd and have been pretty much absent in Dave’s recovery since then.  He has to maintain a very close distance to both the hospital and the clinic in order to address the 10 million things that happen to a Bone Marrow Transplant recipient.  So far, Dave has done splendidly.  Much of his success has to do with the very attitude he has adopted as a natural part of his psyche which is both amazing and unbelievable at times.  He has acclimated himself to the constant visits to the clinic, the dosages and delivery of a vast array of meds, the total and complete loss of his hair (now when I say total…think about that for a minute!), the tired malaise and lack of appetite and probably just the tiresome monotony of just being not well.

But today I can proudly say that his energy is coming back, his appetite is on the upswing, he’s kicked at least two viruses in the butt, tossed one fungus to the curb and sticks to a good daily regimented compliance of taking his meds.  I’m very, very proud of him.   I love him more than I can ever say.

goofus & gallant

still my baby

But now I am going to vent a little.  Stop me if you think I’m being horribly selfish and UGLY here, because actually I am going to be horribly selfish and ugly.  Yes I know Dave is the one that is sick.  It’s horrendous to think that it happened to a sweetheart like him.  Shoulda been me.  But it wasn’t.  Meantime, I feel as if I have no right to complain, or struggle or cry or bitch or moan or whine about anything because after all….HE is the one that is sick.  NOT me.  So shame on me for feeling sorry for myself because I’ve been left alone and there aren’t hundreds of people telling me every single day how wonderful I am.  Because I’m not. I’m also not important in this scenario.  I’m suppose to be strong and brave and keep the house running.  The house that is old and decrepit.  The water leaking in the basement around the AC.  The washer that won’t shut off.  The gross rust that bleeds out of the ice maker in the frig.  The dog and cat that act like I’m there to provide solely for their nutrition, nothing more.  The yard and pond that need constant attention.  The shit that I have to clean up from said animals. Oh ad nauseam.  I know, it’s all the little pathetic things and really how dare I complain?  Gratitude is what I am supposed to be feeling right?  GRATITUDE.   But today I’m not.  I’m tired and I’m sad. I’m tired of slapping on that happy, confident face and faking my way through the day.  I can’t share this with Dave, with anyone.  They will only think I’m an asshole.  Maybe I am.   Hmmm…well I guess if he read this, he knows now.  Sorry Baby, but sometimes I wanna scream!

Sometimes dontcha just wannna say “Muck it!”

Greetings Muckrakers

My oh my how things change in such a short time.  As of this writing I am a full-fledged working girl again!  I was discovered by a recruiter in KC who had a client – A BIG CLIENT mind you – who was looking for someone to fill in for about three months to support some iSeries apps.  Apparently my resume, my charming dispositi0n and my uncanny ability for BS has served me well.  I’ve been unemployed for almost 10 months now.  While I had finally resigned myself to the fact that this was totally none of my doing or timing – that in fact I should be unemployed so I can take care of my guy – there were moments …… OK there were like milleniums of moments where I worried about not working, not making an income and never being HIRE-ABLE again. I was at the point where all I could say was

“muck it!”  

Eventually all that negative energy eventually oozed from my soul and allowed me to focus on Dave rather than on the state of my livelihood.  I believe greatly in the freedom to allow your restless heart a chance to take a break from all the muck of negativity and allow yourself a break to simply just BE.  I also believe that turning your attention on to someone else who needs your love and devotion allows you to step out of your own self – get away from YOU.  Right?  You know how that feels don’t you?  Oh please someone out there – can I hear an AMEN?  Don’t you ever just get sick of being YOU.  I mean me.  Sick of me. Yes I go through cycles.  But once I let all that crap go, someone out there in the Karma world thought I was pretty ok and decided to hire me!~  Well I’ll be dipped in muck!

So children, my MANTRA currently is:

For today…

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A universal mantra we should all follow

Repeat this over and over quietly to yourself, or loudly in the car or whisper it in your head…but repeat it often.  Wrap your love in God, wrap your love in you.

Sometimes just  - 'be'

Empty your head and just be



Loneliness turns in to ONLY-NESS

Today is our 5th day in Kansas City.  Dave has gone through 2 days of apheresis and three days of chemo.  I really should stop counting down the days, but the fact is that this whole damn process is a countdown.  Therefore, I count.

I find myself feeling a trifle lonely.  I can’t find any better word to describe this.  I am away from my home, my own bed, my animals, and crappy house and my lovely daughters. Although, I am a guest at Dave’s sister’s house and am in great company in the mornings with Dave’s mother Connie and her two adorable dogs, I still feel a bit disconnected.  I suppose it’s the overall participation in this journey of wellness that makes me feel a bit isolated.  My surroundings are unfamiliar, my routine is different and I am Dave’s sole companion where we ARE isolated on this Unit due to restrictions for germ-control.  I am a tiny bit bored too.

Sheesh…saying those words makes me feel like a shit.  I’m suppose to be Dave’s rock and I just admitted that I’m “a tiny bit bored” .  I have already scoped out the Hair Salon.  Got a haircut yesterday.  Tomorrow I’ll go to the Chapel and see if I can meditate like I do at home in a hospital chapel.  I’ve already cruised some neighborhoods and checked out a few garage sales.  And I’m walking every morning so far.   Ok, so good for me.  Why do I still feel a little longing for something? *sigh**

While we are cavorting at the KU Med Ritz Carlton, my daughters are all finding themselves working through their own kind of loneliness too.  My oldest daughter Katy has dealt with this separation issue for years now.  But every time our family has a crisis, she feels detached from what is going on.  Poor girl.  When she is struggling with life issues or gets sick, I know that she has a difficult time because she misses us so much.  I think she misses her mom!  Even though she’s been in Florida since 2005, there are still moments where I ache for her.  And I won’t even go to that place of ache and longing when we talk about my adorable grandson Kody.

Mommy Katy snuggles up Kody after a chilly, windy day on the beach.


I miss this little guy more than I can say

My Oreo Cookie cream in the middle kiddle is also away from her own familiar surroundings.  Keely courageously drove up to S.D. to hang with my sister for the summer and make some money working at a saloon and a coffee shop.  What started out as being fun and exciting is now causing her homesickness and detachment.  I know that her personality tends towards fickleness, but she is allowed to feel all those feelings.  How do young people who leave their homes to set out in the world ever NOT feel lonely?  I hope she uses this time as an adventure of discovery, a chance for making a little money and a change of scenery.

the creamy frosting in the middle, Keely

Finally, my baby Sarah is left to care for our home, garden, pond and animals.  It’s a big responsibility for an 18-yr-old, but I believe she is up for the task.  She has expressed to me how lonely she is feeling as well.  Being in our empty house, and having to change her priorities has obviously made her step out of her comfort zone.  Two recent events, breaking up with a boy and making a bad decision causing hurt feelings has left her feeling rejected and isolated.

The depending upon “baby” Sarah.

And need I say anything about the loneliness and isolation Dave may experience from time to time?

Still smiling…my Dave

So ain’t we the Motley Lot?  All of us distinctly separated from one another. Each of us  trying to merely put one foot in front of the other biding our time and doing the next right thing.

If we could all remember that we are ONLY LONELY temporarily.  WE are ONLY doing what we need to do JUST FOR NOW.  It’s “only-ness” rather than loneliness

Oh the ONLY-ness of what we do

Our Muck has changed….

Today I write from the hospital at the University of Kansas Medical Center in the Bone Marrow Transplant on the fourth floor – Unit 41.  We’ve been on a journey that has taken us from discovery to acceptance to participation.  There have been 101 emotions that I’ve gone through since the time of first diagnosis to presently sitting across from that magnificent man who is having “buckets” of toxic chemo drugs shoved in to his body.


I have changed the Category on my blog to AML (Acute Myeloid Leukemia) instead of Myelofibrosis.  Once we recognized that Dave’s condition is AML and there was no way of getting rid of it or returning to the quality of life that he deserves, we knew we would have to say the word “leukemia” and understand that this doesn’t mean a death sentence.  Leukemia has been around since Biblical times although never understood until now.

Acute myelogenous leukemia (AML) is a cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made.

The word “acute” in acute myelogenous leukemia denotes the disease’s rapid progression. It’s called myelogenous (MI-uh-loj-uh-nus) leukemia because it affects a group of white blood cells called the myeloid cells, which normally develop into the various types of mature blood cells, such as red blood cells, white blood cells and platelets.

Acute myelogenous leukemia is also known as acute myeloid leukemia, acute myeloblastic leukemia, acute granulocytic leukemia and acute nonlymphocytic leukemia.A

After an intense session of treatments and recovery therapy in Wichita’s Wesley Medical Center and two more intermittent sessions of  follow-up chemotherapy, the Leukemia is in remission.  So now we have come to the stage of …..


Acceptance has been the key to how we have dealt with thisPerhaps Dave’s acceptance level is better than mine, as he has displayed courage and strength while we have marinated in this new found fact that our lives would be forever changed.  Perhaps too, he has displayed this courage for my sake stoically “like a rock” as he often says that he is.  I’ve had many moments of wanting to run far far away and pretend this is not happening.  I’ve had horrible thoughts of jumping on a bus, wearing a wig, dark sunglasses, speaking with an accent and taking on a new identity.  Naturally that’s the drama queen part in me.  Always the flair for over-the-top behavior.  But somehow, miraculously I have come to terms with this.  I have cried.  I have become so overwhelmed with fear welling up inside me that I’ve made myself sick.  I’ve lost so much sleep….HAH…ya thought I was gonna say “I’ve lost so much weight…”  I WISH!  NO sadly, my weight has only changed a small amount, but my attitude about my health HAS changed since all this began. I have prayed to God that if it be His will that He heal Dave – make it so.  Captain Picard and God, please make it so!  But I’ve also recognized my other spiritual path I follow in meditating positive thoughts and positive energy so that all that is good in the Universe, all that is humane  and powerful in love and compassion will also heal Dave.  I recognize too the many well wishes, positive statements, prayers and sincere support from sooooo many people.  If at one time in his life, Dave thought he was just an unpopular band geek in high school, he has certainly grown in to a beloved man of great wealth now…rich in the form of respect, admiration and downright pure love. 


One way to accept something that is unacceptable is to partake in it and boy oh boy have we ever!  Multiple doctor appointments, trips to infusion centers for blood and platelet transfusions, knowing the color of underwear your pharmacist wears, talking about it, talking about it, talking about it…living it day in and day out…there’s no way that this animal couldn’t be accepted or participated in.  Now all this leads to where I sit at this very moment as I write this post.  It is OKAY today.  I am in a contained Unit where the staff is tremendously efficient and friendly.  I see Davey doing well thus far.  However this is only Day 2 or Day -6 in BMT countdown. I expect to see him react and show signs as the drugs (Busolfan) flow into the catheter port of his body eradicating all the bad bone marrow, and any immune system he has left.

…and I am participating in this with him, trudging through the Muck for as long as it takes!

I’ve always loved the color orange…now I know why

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