Tag Archives: love

Jan17

Update on the Gentle Giant-Last Leg of the Journey

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Update on the Gentle Giant-Last Leg of the Journey

Today we are venturing out on the next (and hopefully final) leg of this cancer saga.  We are headed to that great Cancer Mecca, MD Anderson for the last part of his treatment.  The main focus of this trip is for Kevin to receive a very short-course of focused radiation.  It’s the proverbial icing on the cake, that is, if cancer treatment was cake.  Cancer treatment is not cake, unless the cake is made of cow $hit, pureed animal intestines, and sprinkled with fish scales and the hair of a mangy dog.   

For those of you reading this, who have not had the need to seek refuge and recovery from a cancer diagnosis at an institution like MDA, it is a wellspring of human sentiments.  Around every corner, sitting at the tables in the cafeteria, riding shoulder-to-shoulder in elevators are thousands of individual souls, each trying to keep his/her head above water as they tread in the sea of uncertainty.  It’s a place where emotions run rough-shot over those seeking asylum from disease—emotions ranging from joy to despair.  It is a perpetual experiment of human spirit, resilience, and hope.

The dictionary defines the word Labile as:  of or characterized by emotions that are easily aroused or freely expressed, and that tend to alter quickly and spontaneously; emotionally unstable.  Well, that certainly sums up my psychological state the last few months.  Being 100% authentic, my feelings are less about the wide swing in extremes and this is the most difficult part to convey, but I have been experiencing emotional soup. My heart and head have been a bubbling caldron of chaos.  It is so hard to be the owner of so many conflicting emotions.  I struggle to sort them, categorize them, tuck them away out of sight, cage them, embrace them, dodge them and deny them.  Most days, I can’t even define them.

Riding shotgun to Kevin during this season of cancer recurrence has given me a glimpse of all the ways that this disease creates an emotive Armageddon for those in its clutches, as well as those on the fringes.  I have been a witness to him experiencing disappointment, anger, pain, anxiety, hope, gratitude, relief, sadness, hope, fatigue, love, frustration, and everything in between.  I have made every attempt to magnify the good and soften the edges of the pain and hurt.  It is a big job and one that I have not learned to navigate with any degree of success.  Sometimes, there just isn’t anything I can do to make it better, other than just be present and that is so far from enough.

The surgery and subsequent recovery have been a lot heavier than he was expecting, but he is making great strides.  He has shed the feeding tubes, drains, and doppler implants.  He is eating soft foods and he is able to manage his pain for longer periods.  Getting comfortable at night is still a struggle and some nights are better than others.  Some days are better than others.  Some moments are better than others.  Those with cancer are deemed to be warriors.  Warriors aren’t warriors because they are immune from pain, worry, fatigue and fear.  Warriors are warriors because they feel pain, worry, fatigue and fear and they choose to keep marching forward.

As the distance between where we are and where we are headed shrinks, I have to prepare my heart.  I am not a warrior.  I am constantly trying to reconcile how I can be feeling blessed and cursed at the same time.  How is it possible that I feel hopefulness and despair simultaneously?  Why is it that I can talk myself into a genuinely positive peacefulness, while fear and worry have a death grip on my innards?  How does my logical mind entertain that there is some flaw in my character or life choices that has caused this calamity on one so underserving?  Was I not grateful enough for the healing the first time around?  Did he get one toe over the five-year mark and I exhaled too quickly?  Is all of this a result of my complacency?  I understand the utter absurdity of this line of thinking, but applying logic to the thoughts that pop into my brain like one would apply a known solution to mathematical equation is not how I am wired. It is more like an on-going game of Whack-A-Mole in my brain.

I may be bobbing around in my emotional soup, but I am fully aware of the certainties that punctuate this story. 

  • The friends, family, and community who have come together to support Kevin is phenomenal.  We see those walking this journey alone and we have, not even for one moment, been alone. 
  • A friend sent me the book Jesus Calling.  A friend knows when I am needing Jesus.  Jesus also knows that when I let his calls go to voicemail, I am most likely in a heated game of brain Whack-A-Mole.  Jesus gets me.
  • Kevin is all kinds of good. Cancer is a lot of things, but fair isn’t one of them. 

The day at the hospital that was particularly difficult for Kevin was when they were doing the preparations for the upcoming radiation.  All the steps that he had went through before brought to the surface some severe apprehension and anxiety.  He was suffering physical and psychological pain and it was nearly unbearable to be a bystander to this level of turmoil.  His spirit was frayed and I felt helpless in every way imaginable.  He reluctantly admitted that he was feeling really down (my Good Lord who wouldn’t be)?  As one who has to have my serotonin chemically enhanced, I offered up the only thing in my arsenal:

Me:  Kevin, if you are feeling depressed you can try some of my Prozac.

Kevin: My God, woman, I said I was feeling a little down, I am not a flippin’ psycho.

Me:  …

He was frayed, but not broken!!  We both belly-laughed at the sheer truth to his humor.  We are quite a pair, the Giant Warrior his Little Psycho…imperfectly navigating this the only way we know how…together.

Dec24

Where Are You Christmas?

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Where Are You Christmas?

Cindy Lou Who sings this contemplative line in her sweet childlike soprano in the iconic Christmas movie The Grinch.  I will admit, I opened my eyes this morning and looked around this hotel room that has been my home for the last several weeks and I was feeling a little melancholy mixed with a little smidge of Grinch.  I scanned the room for any signs of Christmas.   Aside from the adorable little 12-inch Christmas tree we were gifted, a surprisingly hardy Christmas cactus (also a gift), and a Charlie Brown Christmas card taped to the wardrobe door, Christmas was pretty scarce. (Sing)- Where are you Christmas?  

I have scrolled through social media and seeing all the families gathered in celebration both warms my heart and stings a little.  I have Christmas decorations that have been sitting unadmired through nearly the entire advent season.  Christmas gifts are piled in my closet, some are wrapped, the majority are not.  They were abandoned in haphazard fashion unadorned in the matching wrapping paper and massive glitter ribbons that my family loathes.  Naked boxes and empty stockings… (Sing) Where are you Christmas?

Christmas is about joy and laughter and being with those you love.  It shouldn’t be about cancer, surgery, and being far away from home.  Kevin shouldn’t be getting Christmas dinner in the form of a nasty supplemental formula through a tube.  I shouldn’t be eating chicken noodle soup out of a cup and feeling like a rat for eating anything at all.  We shouldn’t be far away from our kids, family,  friends and pups.  We should be donning our fat pants and belly laughing around a table as we stuff ourselves with a Christmas feast. (Sing)- Where are you Christmas?

Life hasn’t brought me to this exact moment in time to lament in my perceived seasonal misfortune and wail along with Cindy Lou Who’s mournful sad-sack song of Christmas despair.  Yeah, it sucks big fat moldy holiday fruitcakes that we are here for the Yuletide, but do not despair! The spirit of Christmas is alive and well.  While we might not be celebrating in the traditional sense, we are surrounded by the true meaning of Christmas, every moment of every single day.  (Sing)-Joy to the World.

Kevin has been FINALLY able to get some rest over the last couple of days and when I say this is a gift, it truly is a Christmas miracle.  He has been immensely uncomfortable and despises the feeding tube and has been finding it extremely difficult to get comfortable enough to rest for any length of time.  This sleep hurdle is one that has been HUGE for him to conquer.  (Sing)-God Rest Ye Weary Giant Man.

We are now counting down the days to when we can return to the mundane magnificence of our ordinary life.  I guess being propelled into a state of worry and chaos really makes one significantly grateful for the day-to-day simplicity of just being at home, healthy, and wrapped in a blanket of familiarity that provides such complete warmth, I often fail to acknowledge its persistent comfort, until I am standing without it in the shadow of uncertainty. (Sing)-I’ll Be Home for Christmas-if only in my DREAMS.

It is slow progress as Kevin starts to heal, but it is forward progress and that is what matters.  He has appointments next week and we hope to be leaving Houston as soon as he finishes up with the doctors.  We will have a short reprieve at home, before returning the first week in January. He is frustrated with the process and he REALLY wants a drink of water or something to eat.  I have offered to give him a tiny drink of root beer or anything for that matter, if he would agree to just swish it around and spit it out.  He said that would make it worse.  I thought it was a reasonable compromise and honestly, if it was me I would have been totally taking him up on that offer of medical noncompliance.  He has also decided that we should continue with the routine of me drying him off after his shower and dressing him, even after he recovers.  He keeps forgetting that Santa is watching.  (Sing)-He knows when you’ve been bad or good…

Christmas is about LOVE and we have been on the receiving end of an abundance of love.  We feel it in every prayer, call, message, gift, card, text, and thought.  We may be far away from home, but we are far from being alone.  You all are with us in each moment of this journey.  You are our Christmas angels.  You have created a cocoon of love, hope and joy for us and your love shines brightly. When I couldn’t pray, you have prayed for us.  When things were dark, you brought us sunshine. When faced with the impossible, you make it possible.  When I thought Christmas was lost, you reminded me that it is in all of us, all the time. (Sing)-Angels We Have Heard on High.

Merry Christmas.  My wish for you is that you drink in every moment, love with pure hearts, give without reservation, receive with graciousness, and hold each other for just a moment longer.  I hope that you never have to ask the question, where are you Christmas and if you ever do, I hope you have someone to remind you that where there is love, there is Christmas.

Nov27

Stepping into the Light

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Kevin and Sophi at Hannah and Leo’s Wedding. 11/12/2022

Being blessed (or cursed) with an imagination that has long busted through the seams of normality, the dark is a space that can hold an embarrassingly excessive amount of perils.  Albeit, the creatures of the night are usually confined to the constraints of my brain, there are times when the darkness that seeps into the portions of my heart is not of the imaginary sort.  It is hard to be brave in the dark.

It has been several weeks now since we have learned that Kevin’s cancer has decided to make an encore performance on the center stage of our lives.  The spotlight is once again on this tired old washed-up act long after what we thought would be its final curtain call.   Sometimes, the darkness seems even deeper in contrast to the focus of a spotlight.  I am afraid of the dark.

What we first thought was going to be a very simple outpatient procedure has snowballed into a much bigger undertaking.  Our simple one act play has turned into a major production of sorts.  As the treatment plan has shifted, the ground beneath us seemed to as well.  Kevin and I will be departing for Houston’s MD Anderson early next week.  He has several preoperative appointments that week and his surgery is scheduled for Monday, December 12th.  The surgery will consist of the removal of bones in his jaw, some teeth, and a portion of his hard palate.  In addition, they will be removing the cancer from his right sinus cavity, the cancerous lymph node and several other lymph nodes in his neck.  They will use bone/tissue from an undetermined (as of yet) portion of his body—hip, forearm, thigh, to reconstruct the parts they are removing from his mouth/jaw.

He will need to stay in the hospital for about a week after surgery is complete and he must remain in Houston for a week after he is released for monitoring and follow-up.  Barring any bumps along the way, our goal to be home for the holidays is marginal, but still a possibility.  Being home for Christmas would be ideal, but having him healthy is essential.  We don’t know the exact timeline, but after he recovers from surgery, we will return to Houston for more radiation.  We have been promised that the radiation won’t be as brutal as last time.  I am clinging to the validity of that promise.

Perhaps you don’t believe in miracles and subscribe only to the science and reality of that which can be proven without question.  I assure you that miracles are real and goodness is alive and well in our world.  There are only a handful of doctors in the world who have seen the type of cancer Kevin has and we are beyond blessed to have Kevin entrusted to a team of these brilliant minds.  With that beings said, he is only able to access this treatment and fight this maggot of a disease because of the outpouring of love and support from an army of family, friends, community, and even strangers.  I have no words to express the amount of gratitude and humble appreciation for everything.  There is little peace in navigating this, but I can tell you there is no greater peace than feeling the burden of “how” being lifted by those who have absolutely no obligation to take on any of the weight.  Those selflessly giving, praying, hoping, texting, calling, smiling, listening are his miracles…our miracles.  Miracles are what makes the impossible possible…thank you for making it possible.

Yesterday I spoke to a dear friend who lost his wife to cancer.  As I lamented about how I am unable to sleep at night and spoke briefly about my anxiety that is borderline DEFCON 2, he let me ramble.  He then said, “I know what it feels like.  I get it.  Hang in there.”  It really wasn’t so much what he said, but more the look in his eyes when he said it.  A look of kindred spirit born of anxiety, worry, tears, and sleeplessness.  A look that says:  I have held my heart together with duct tape and caffeine; I have agonized watching my person suffer; I have known what it is like to not be able to take all the pain away.  I am glad I have people who care enough to remind me that I am not alone. 

Although I have resorted to an anxious insomniac, prone to tears and always in desperate need of a hug, the man who is actually living this nightmare is doing great.  His attitude is on the verge of chipper.  He is sleeping like a baby and soaking up moments with his family and friends.  He is quick with a smile and hasn’t passed up an opportunity to eat, drink and be merry.  He is the strongest person I know and I am so absolutely blown away by his positive view of what he is facing these next few months.  He is my best buddy in the entire world.  Unlike me, Kevin is brave.  He isn’t afraid of the dark.

Please continue to lift Kevin up in your prayers and know there are no way to possibly quantify our gratitude.  We simply are in awe.  There are times when the darkness seeps into portions of my heart and I am paralyzed on how to possibly take even one step forward.  Then, I am surrounded by a multitude holding the torches fueled by love and I find myself stepping into the light.  Thank you.

Mar22

The Omission of Remission-Words Matter

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The Omission of Remission-Words Matter

 

cauliflowerI hate the word cancer.  When referring to my husband’s experience with this ass-hat of a disease, I often substitute the word cancer with the less formidable word cauliflower.  Cauliflower doesn’t conjure up the ugly visceral response like cancer does.  I am not afraid of cauliflower.  I don’t hate cauliflower.  Nobody feels sad or uncomfortable when you bring up cauliflower in casual conversation.  My friends and family know exactly what I am talking about when I speak of the cauliflower and the rest of the world just thinks I am weird and they aren’t exactly incorrect.   Semantics are a viable defense mechanism.

Kevin has reached the ONE YEAR mark since he completed treatment for the cauliflower and we just returned from Houston with a clean scan.  His thyroid is a little fried from the radiation but there was no cauliflower detected!  MD Anderson is the Mecca for those suffering from all kinds of cauliflower and we have become familiar with the sights, sounds, and lingo that swirl around this amazing place.   Every patient, friend, and family member traveling the mazes of floors and hallways has a story.  Sometimes we sit in waiting rooms for hours and share our stories and sometimes we just sit quietly, our eyes adverted from IV drips, missing body parts, and skin over bone frailness.  It is a community nobody wants to be a part of and yet we are all thankful for being there, wishing all the while we were someplace else.

Sitting in the hotel bar celebrating the good news, a group of cowboys came in to watch the basketball game and toast to their good day at the hog sale.  While making small talk, they made their way to asking what brings us to Houston.  Kevin told them that he was there for his follow up from cancer treatment and that it was a good report.  They congratulated him and raised a glass and one commented that it was great that he was in “remission”.  My gut clinched and on the outside I smiled and raised my beer, but on the inside I was like, “Hold it right there, Cowboy.  That is not a word we use around these parts.”  I realized right then and there I had another word to add to my list of words I hate: REMISSION.

Remission is a word that is used to describe a cauliflower that is still there but isn’t exactly growing or doing causing any real and present danger.  It is a lurking, hiding, evasive cauliflower awaiting the opportunity to take root and sprout.  NO WAY.  This is NOT what we are toasting.  We are not here to give this cauliflower an easy “in” to just pop up whenever it damn well feels like it.  “Oh, hey, Cauliflower, been a while, come on in and make yourself at home.”  Hell to the no!   We can go with eradicated, terminated, dissipated, decimated, slaughtered, annihilated, sent packing, but we are not going to label it remission.  It is too polite.  It is too open-ended.

I am not sure why the words of a well-meaning cowboy hit me so sideways.  After all, I have my husband and he is healthy and cancer-free in this moment.  Why all the inner turmoil over a term said with good intent by a pig farmer in a bar?  It is because that word robs me of the finality of this chapter in our lives.  Our lives are forever changed, but for this moment it is good and I don’t want the next chapters to begin with “remission” dangling like a participle at the end of a really long sentence.  I want a “hard stop”.

Looking over his MRI report, it seems that the medical community has embraced this notion, as his report didn’t say anything about remission.  It said, “NO EVIDENCE OF DISEASE.”  That has a really nice ring to it!  BOOM!  Nothing there!  No caveat of “Nope, we sure didn’t see anything, but that doesn’t mean it isn’t in there somewhere.”

I have said all this to surmise that I have decided on the omission of remission.  We are going to hang our hat on “NO EVIDENCE OF DISEASE”.  Subsequently, I have decided that dissecting the medical terminology used by a cowboy pig farmer in a bar is exhausting and should also be avoided.

We were putting away groceries a couple of weeks ago and Kevin threw a head of cauliflower at me, when I wasn’t looking.  Thanks to my catlike reflexes (just go with it, it was self -preservation and luck), I caught it right before it smacked me upside the head.  My son Evan said, “Wouldn’t it have been ironic if Dad survived cauliflower and accidentally killed mom by hitting her in the head with an actual cauliflower?”  This is our life.  These are our moments.  For these, I am thankful.  Words matter, moments matter more.

Nov16

Before You Go—a Tribute to a Life Well Lived

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Before You Go—a Tribute to a Life Well Lived

Loving big means letting go hurts—it hurts a lot.  A little over 15 years ago, Santa brought our son a little poppet we named Cooper.  He was tiny; smaller than a can of soda pop.  Small things don’t usually fare well in our house.   Frankly, we are rough on furniture, walls, and flooring.  Our clan isn’t outfitted for fragile of any sort.  If the first few weeks as a member of our family was any indication of his chances of surviving the rambunctious chaos he was adopted into, odds were heavily stacked that the poor little guy was doomed.  Right out of the gate Sophi stepped on him, resulting in a seizure and a long lethargic night.  This incident was followed shortly by an emergency vet visit for a collapsed trachea.  He was accidentally dropped, inadvertently kicked and he took a serious tumble down the stairs, which left him terrified to descend the stairs.  Fortunately, Evan provided intense bologna therapy.  The therapy worked, although he suffered with the bloat for several days.

Cooper is over 100 years old in human years and the last year we have watched as his health has declined significantly.  This week the magnitude that our resilient little buddy was undoubtedly living out his last days settled in like an uninvited guest.   Kevin took him to the vet on Monday and I threatened him sternly not to return without him and returning with him in a tiny urn wasn’t acceptable.  I wasn’t ready.  I am not ready.  Instead he returned with our faithful little guy with his breathing labored and his desire to eat or drink diminished to almost null.  He was diagnosed with congestive heart failure and a severely enlarged heart.   Kevin had a little bag of medicine and I eagerly asked if it would help.  Kevin said it might help, but I knew he was just trying to soften the rough edges of reality.  The bag wasn’t big enough to hold much hope.

The medicine did make him feel better for a little over a day.  He ate, he went outside and he even growled at Evan.  I was beginning to believe the little bag contained more hope that I had first thought.  But his rally didn’t last long.  I had to leave town to accompany my mom for a surgical procedure and I got the call that Cooper wasn’t doing well again.  He was having trouble breathing and refused to eat or drink.  I felt my heart break a little bit more.  Before I left I held him, petted him, told him countless times how much I love him and gave him a zillion pooch smooches, it didn’t seem enough.  I wasn’t ready.  I am not ready.

I know that he is a dog.  I do.  I mean deep down in my logical mind I know he is a dog, but in my heart and in our lives, he is so much more.   I might not make it back home in time to tell him goodbye.  I am hoping that Kevin will read this to him so he knows how much space his tiny 8 pounds takes up in my heart.  I want him to know that he was never just a dog to us and I hope that being part of our rowdy crew has given him a fraction of the joy he has given us.

This is for you Cooper:

Thank you for being so resilient and forgiving the accidental bumps and bobbles and more than one kick off the bed in the middle of the night.

Thank you for being the hero in all of our wild (though mostly imaginary) adventures together.  You are the only dog I know who has been on Dancing with the Stars, worked deep cover missions for the FBI, and made friends with a pigeon that smoked cigarettes.

Thank you for believing in Big Foot.  One day the world will know we are right.

Thank you for accompanying me to the bathroom each and every time I go.  This speaks volumes about your loyalty and let’s face it, your tolerance for unpleasant circumstances.

Thank you for limping around for an entire evening after Evan “shot” you with a banana.

Thank you for pretending like you liked the legwarmers I put in your stocking.  

Thank you for letting me vent to you and never judging my craziness.  You are a rock.

Thank you for taking such good care of your beaver.  That is one lucky beaver.

Thank you for tolerating you little sister.  I know she has driven you crazy over the years with her demanding so much attention and usually getting it.  You have always been the main man.  Your patience with sharing us with her is to be commended.

Thank you for being my buddy.

Thank you for making me belly laugh with you nonsense.

Thank you for letting me give you really bad haircuts.

Thank you for claiming that tiny space between us in the bed.  I know it is going to be like a cavern when you are gone.

Thank you for not tolerating Evan’s antics.  Your intolerance for his SLOW WALK and MEAN FACE never faltered.

Thank you for letting me call you Mr. Conniption, even when you thought it was stupid.

Thank you for letting me put you in a Rubbermaid container strapped to the handlebars to go on bike rides.  That literally must have been terrifying for you.

Thanks for swimming with us at the lake, even though water isn’t your thing.

Thank you for letting us be your people…your imperfect quirky people.

Thank you for hanging on so long and so hard, because I wasn’t ready.  I am not ready.  You are my soldier.

Before you go, just know you gave us your best life.  I shouldn’t ask for more.  You have been…are…and always will be so loved.

I wasn’t ready.

I am not ready.

But when you are ready, I will be brave for you my faithful friend.  Thank you for a life well lived.

Mar6

Big Prayers for Big Kevin-The Homecoming

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Big Prayers for Big Kevin-The Homecoming

Kevin bangin’ the gong!

Several times I have sat down to compose an update on Kevin’s cancer treatment and I have found myself overwhelmed by the task of wrangling words into some sort of logical sequence to sufficiently fill the space between the last post and where we are now. Each time, I found myself overwhelmed and unable to whittle down the sum of the experiences into a simplified version of a complex equation.  I would like to point out that this is yet another example of how my life-long search for a situation in which Algebra would be applicable and useful remains just an empty promise from my high school Algebra teacher.  There is no balancing the cancer equation.  There is no solving for X or Y and there are certainly no easy solutions and sometimes there are no solutions at all.

I decided to start simply and lookup the definition of cancer and this is what I found:

/can·cer/[ˈkansər] noun-the disease caused by an uncontrolled division of abnormal cells in a part of the body. 

Well, that sounded practically harmless. It certainly didn’t paint the picture of the shit show that has been our life for the last several months.  So I read on:

 

/can·cer/–noun-a practice or phenomenon perceived to be evil or destructive and hard to contain or eradicate: synonyms: evil · blight · scourge · poison · canker · plague · pestilence

Now I was getting somewhere. This is more accurate.  Thank you, Oxford Dictionaries©, for recognizing cancer for the bastardly equal opportunity butt licking tribulation of chaos it is. The day that sometimes seemed to be moving further away instead of closer finally arrived. Kevin completed his 32nd and final radiation treatment on February 16th. I have chronicled some of the brutal side effects he has suffered over the last couple of months and it has been excruciating to witness so I cannot venture to imagine what it was actually like for him to experience it firsthand.  Each day of radiation took more and more out of and from Kevin.  Although he is unable to eat anything other than the Boost Plus shakes and water, he managed to avoid the feeding tube. I am not sure why the folks weighing him didn’t notice that he had 7 layers of clothing on and a jacket when it was 70 degrees; not to mention the $17.00 of change in his pockets, but I guess that is none of my business (insert eye roll here).  When the radiologist told us that the results of skull based radiation are traumatic, he wasn’t just whistling Dixie.  The physical toll has been extremely difficult to witness.  The weight loss, the vomiting, the pain in his head, mouth, throat and face, the skin changes, the loss of hair, the extreme fatigue, and the dead and burnt flesh and mucous he flushes from his nose several time a day—let’s just say, pussies need not apply.

The physical impact has been hard, but the emotional toll it has taken on him has been equally as brutal and nearly unbearable for me to stand. I think most people who know Kevin would agree with the fact that he is pretty laid back.  He doesn’t ruffle easy, nor does he get too excited about much.  Whereas I tend to get super excited about things such as when the Cheerios left in my bowl make the shape of a rabbit or I see a red fox cross the road or when every single sock in a load of laundry has a mate (a true miracle akin to the statue of the Virgin Mother crying tears of blood).  I worry about coyotes chasing me on my way back from the barn and lose sleep pondering my chances of being filleted by a serial killer and wondering what picture my family would use if I went missing.  If our brains were colors, his would probably be a calm constant shade of calming blue and mine would be a bag of Skittles.  I guess that is why the extreme anxiety and ill-ease he experienced had us both on the ropes.  Seriously, folks, there is only one crazy seat on this train and I am in it.

The babies welcoming their daddy home.

We were beyond relieved to return home. Stefon Klugg graciously shuttled my step-dad, Ron and baby sister, Emily, to Houston in his super cool plane and they drove our truck back, while Mr. Klug flew us to our homeland.  Not only did we avoid putting Kevin on a commercial flight (a.k.a. a flying incubator of germs), we were also welcomed at the airport by a host of family and friends.  There were hugs and tears and some more hugs and some more tears.  I had tried to warn those eager hosts that the man I took to Houston was not the same man I was bringing home, but some were not prepared.  Cancer and his caustic sidekick radiation had worked him over…but we were finally home. We were surrounded by people who love us, which is really what home is and it felt AMAZING.

Radiation Crew

As we try to acclimate back to some sort of normal (believe me I am using this term in the loosest sense) life, Kevin struggles every single day with the lingering effects of the radiation. He still is only able to tolerate Boost shakes, water, and we recently added bone broth to his menu.  Some days are better than others.  He is weak and tires easily, has intermittent pain and discomfort and continues with a lengthy regimen of sinus rinses, mouth swishes, fluoride treatments and skin creams.  He has dropped more weight and has only slept twice through the night since we have been home.  His taste buds are completely out of order and the few attempts he has made at tasting food resulted in the same conclusion:  “it tastes like ass”.  Although he has used this same phrase to describe some of my cooking in the past, this time it has nothing to do with my lack of culinary skills.  In spite of all the struggles, he is making progress and for that I am immensely grateful.

It has been a long road and I am perpetually exhausted, both physically and emotionally.  There has never been a season in my life where I have felt more completely helpless.  There were days when my attempts to find ways to ease his misery were nothing more than exercises in futility. As he continues to grow stronger and his health is restored, I hope that I am able to dial down my heightened state of constant readiness; my personal goal is to at least plateau at DEFCON 3 on or before April 1st.  In so many ways I feel like I have been holding my breath since this ordeal began and I am apprehensive to exhale.  I don’t want God to interpret my need to breathe as a sign of being complaisant.  I am not sure how to balance the joy of being on the downhill side with my need to stand vigil for any sign of trouble returning.  I really don’t think it is too much to ask to have left Houston with at least a ’30 Year Cancer Free Guarantee’.  So many things about this stupid disease do not add up-there are no simple solutions.  We may not be stepping into tomorrow with a bumper-to-bumper warranty, but we certainly aren’t empty handed and our hearts are so full because…

  • We have been shown immeasurable love by our family, friends, and community.

    The Elite Cancer Squad…our forever friends.

    My Sweet Ladybug-Meg.

  • We have made beautiful new friendships in the middle of ugly circumstances.
  • We have seen the selfless generosity of others meet our needs, often before we knew what the needs were.
  • We have witnessed the power of prayer daily.
  • We have learned that faith is an action verb and must be practiced daily (even if it is wobbly)
  • There are people in my life who love me enough to come into our home and tackle the task of sweeping, mopping, dusting, sorting, and restocking provisions in the aftermath of six weeks of being inhabited by savages (a.k.a. our children and the menagerie of our furry friends). That is BIG LOVE! My tribe is above awesome.

 

I appreciate you allowing me this venue to express my fears, frustrations and the plethora of other unpleasant emotions. Thank you for tolerating my posts about mucous, puke, sinus flushes, and burnt flesh.  Above all, thank for your unwavering love.  I want to leave you with a smile (maybe even a chuckle).  I have been given temporary custody of my grandcat, Fiona.  She is the sweetest most precious cat in all the land.  Her beautiful long fur wasn’t brushed daily in our absence and became matted.  I thought you might want to see the end result, when I had to shave my daughter’s pussy kitty.

Fiona- Before

Fiona-After

 

 

 

 

 

 

Feb1

Kevin’s Cancer Journey- The Rainy Season

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Kevin’s Cancer Journey- The Rainy Season

kevsleep

Power Nap.

When we started on this journey to restore Kevin’s health, we thought we were prepared for the road that was before us.  We now know that no amount of cancer treatment-readiness would have adequately prepared us for this journey.  In a nutshell, we voyaged out to sea during a hurricane in a jon-boat, with one paddle and an umbrella.  It is one thing to hear about the waves and rough sea or to see the video news footage from the eye of the storm, but it is a completely different thing altogether when your tiny boat is being beaten by the wind and water, every wave threatens a capsize, and you are no longer sure in what direction the shore lies.  Cancer is like childbirth-every experience is different.  But the TREATMENT for cancer is like natural childbirth.  No matter what you have heard, read, or believe to be true, the actual experience is far more brutal.

You know what really burns my biscuit?  When I read the inserts for medication of all the potential side-effects and they seem so very unlikely.  If you read the potential side effects for over-the-counter vitamin C, you find that it may cause:

  • Diarrhea
  • Nausea
  • Vomiting
  • Heartburn
  • Abdominal bloating and cramps.
  • Kidney stones.

As a kid, I would never just take ONE FLINTSTONE Vitamin.  I munched down 3, 4, maybe up to 6 if Mom wasn’t paying attention, ingesting up to 600% of the recommended daily allowance of Vitamin C.  I never suffered any Vitamin C related side-effects.  So, when researching the possible side-effects of skull-base radiation, we hung our hats solidly on the word ‘possible’ (we are such optimist).  We were wrong.

The first ten times they shot poisonous radiation beams into Kevin’s head, neck and sinuses, it didn’t seem too bad.  He was a little more tired than usual and he had some increased congestion and he coughed up some stuff that was three kinds of scary, but it wasn’t a hurricane.  It was more like a constant irritating drizzle.  Little did we know that the storm was brewing and when it hit, I was scrambling to batten down the hatches.  Then I suddenly remembered I was in a jon-boat and I really have no flippin’ idea what hatches are and I sure as shit don’t know how to batten them down.

It was expected that the radiation would irritate the back of his throat and roof of his mouth and make it difficult for him to eat and swallow.  In my mind I am thinking okay:  broth, soup, pudding, Jell-O, ice cream, milk shakes, protein shakes and he will be good.  I will feed him full of things that slide easily down the gullet.  What wasn’t expected is the severe nausea and violent vomiting in reaction to the radiation.  Not only is his gag reflex reacting like it is on crack, but he has had severe nausea and vomiting.  He hasn’t been able to eat anything solid for the last couple weeks, tolerating only water and Boost Plus (high calorie) nutritional drinks.  Because he happens to be a big guy, he is supposed to slam 8 of these a day to maintain his weight, but he is so damn sick that is a very lofty goal.  He sometimes wakes out of a dead sleep dry heaving.  The meds they have given help some, but nothing so far has been able to squelch the beast.

His weekly appointment with the Radiology Oncologist was today and he is doing everything in his power to get this under control and avoid putting in a feeding tube.  He prescribed two more medications and scheduled another mandatory weigh-in for Friday.  We headed to the pharmacy to pick up the new meds and the man at the counter and I had an enlightening conversation that went something like this:

Counter Man:  We have the one medication, but the other the insurance kicked back.  It is pretty pricey.

Me:  Okay, how much is pretty pricey (What the pharmacy counter man doesn’t know is that I have the insurance flex spending card and I am ready to lay down the entire year’s allowance for whatever is going to make Kevin stop power puking.

Counter Man:  They come in packs of 2 pills and we usually only dispense two, due to the cost and his doctor ordered 30 pills.

Me:  Okay, just tell me how much it is going to cost to get it filled.  I want to just pay for it.

Counter Man:  Twenty Thousand.

Me:  TWENTY THOUSAND U.S. DOLLARS?!! (just to be certain, because there was that off chance he was talking about pesos or even better, Ugandan Shillings (approx. $5.34).

Counter Man:  Yes ma’am.  I have sent a message to the doctor.

Me (in my head):  I hope you included in your message that the nice lady with the puking husband wants to personally thank him for prescribing a ‘great drug that has been very successful in situation like these’ that costs more than three times what the car she currently drives is worth; one thousand dollars less than she earned the  entire year right after college; nearly 1/3 of what they paid for their first house.

Me (out loud): We will just be getting the one medication today.

Counter Man:  That will be $19.00

Me:  Perfect.  I was shown the Maserati and I am leaving with a 1986 YUGO.

 

I haven’t fully recovered from sticker shock and Kevin has spent the majority of the evening getting Boost Plus down and trying even harder to keep it down.  There is nothing quite like being the Captain of this boat and standing by completely helpless while the storm continues to take its toll on my normally hearty first-mate.  I keep telling myself to stay the course, the treatment sometimes seems worse than the disease.  This is something he has to get through.  He can’t opt out.  I have to be brave, and positive, and strong and most of the time that is exactly what I am being.  But there are times, when he is sleeping, I sit in the closet in the dark and drink chocolate milk and maybe I cry a little.  Sometimes I drink it right out of the carton (sorry roommates, if you are reading this, there might be a little bit of backwash in the chocolate milk).

Enough about this stupid Kryptonite radiation crap.  Here are some other fun facts:

  • Spending 90% of the time in an apartment 800 miles away from home is a perfect way to discover just how comforting chocolate milk can be when consumed in the dark straight from the carton.
  • Everyone is Houston has a dog, except me.
  • The dogs in Houston are overwhelmingly more friendly than the human beings.
  • I can now independently navigate to Target and Kroger without the use of Siri.
  • The maximum number of times I have circled the block to avoid parallel parking Kevin’s truck in downtown Houston—Eight. Twice I gave up and parked in the parking garage.
  • The top two things I eagerly look forward to each day: 1. Taking the trash to the trash chute  2. Walking to the mailbox.
  • Expecting the Rocky Theme to spontaneously play when carrying a case of water up a four flights is setting one’s self up for disappointment.
  • There are not words big enough to express our gratitude for the gifts, cards, messages, emails, care packages and prayers we have received. We are going to make it through this because of all of you.  Special thanks to the special people who have donated airline miles to fly our kids to visit us and a big

    sophplane

    Sophi traveling to see her daddy! Thank you Stephon Klug!

    shout out to the special guy who flew one kid down in his private plane!  There is no doubt that we are staying afloat because of the lifeline our amazing family, friends and community have extended us.  God is good.  Y’all (that is what they say here in Texas) are awesome.  We will outlast the storm.

Jan8

Cancer Chronicles –Update on Big Prayers for Big Kevin

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Cancer Chronicles –Update on Big Prayers for Big Kevin

It has been a long time since I have posted an update. Things have been a little busy.  Kevin’s post-surgery recovery was full of ups and downs.  There were good days and bad days and some days that were a mixed bag of good and bad.  We did have a wonderful holiday and spent quality time with our family and friends.  Have you ever heard someone say, “I never realized just how blessed I was until (fill-in-the-blank with customized life-altering event)”?  This is us now…every single day.  We are tired, scared, nervous, challenged, consumed with worry, but above all we are loved and we are blessed.

Kevin was hoping the removal of the tumor from his right sinus cavity that has been blocking his airway for the last year would allow him the freedom to breathe freely. What is the saying about best laid plans of mice and men?  That’s right!  They often go awry.  The surgery required a great deal of destruction on the tumor side, which lead to considerable annihilation on the healthy side to harvest tissue to patch things up on the tumor side.  All this tumor excavation, cancer mining in the bones, sinus demolition, healthy tissue excising and transplanting left him with double the sinus fun.  Subsequently, he was left with the inability to breathe out of either side.

Nights have been especially challenging. He has acquired a plethora of medical salves, sprays, pills, and potions to address the airway issues.   There has been an influx of medical devices that have been employed to assist in the oxygen exchange.  He has a cool mist humidifier, which is sort of like falling asleep in a rain forest or in front row seating at a burlesque show—depending on if he sets it on high mist or low mist.  The SinuGator® has also been added to the menagerie. If you do not know what a SinuGator® is or what it does or what it can produce from depths of one’s sinuses, fall on your knees and thank God for sparing you from having intimate knowledge of this device or its function.

We are calling Houston home for the next six or seven weeks. We settled into a comfortable apartment just minutes from MD Anderson and the Proton Center, where he will be receiving treatments.   Shortly before we left on our journey to our new homestead, we learned of another man from our community waging his own battle against the bastardly disease.  We were told he was also seeking treatment at MD Anderson and he and his precious wife were going to be there the same time as we were.  God immediately spoke to our hearts.  We have only been able to get Kevin the care and treatment at MD Anderson by the selfless generosity of our family, our tribe, and our community and now we have an opportunity to share the blessings we have received.   We invited them to share our living space in Houston and they graciously accepted.  We have embarked on this journey with new friends by our side.  We have established our own little cancer commune and we laugh and we cry and sometimes we ask why.   We don’t have any answers, but we have each other and it is truly a beautiful side effect of this ugly disease.  I will not include any information of their journey in my posts.  It is not my story to tell.  I will tell you that we are stronger together and your gifts have gone further than you even know!

Kevin was supposed to start his radiation treatment early last week. There were some last minute changes in his treatment plan (and by changes I mean they totally scrapped the old plan and made a whole new one).  They changed the type of radiation, which changed the mapping and calculations and long-story short, he started radiation on Thursday.   He has to be bolted to the table with a molded mesh mask and a protective mouth guard in place, which makes it very hard to believe.  In the middle of his very first treatment the machine threw a rod or blew a head gasket or reached meltdown mode and powered down.  So, he had to wait for the Radiation X-Men Repair Patrol to fix the machine and start again.  Friday he managed not to break the machine.  We are considering Friday a WIN.

We met with the Radiology Oncologist in length Thursday evening. His message was very informative and in a nutshell he spent 45 minutes detailing how badly this is going to SUCK.  The “radiation Splash” is the good stuff that the radiation splashes while obliterating the cancer.  In Kevin’s case, this may include, but is not limited to:  his optic never, his hearing nerve, the roof of his mouth, the saliva glands, his smell, his taste, his ability to swallow, his teeth, and it will progressively leave him physically fatigued.  The biggest challenge in the next few months is nutrition and weight maintenance. If he loses more than 5% of his body weight he will have to have a feeding tube. The doctor’s order was specific:  “You mouth is going to hurt, your throat and esophagus will be burned, food will taste like shit and you will be so exhausted you will physically not feel like eating, but YOU HAVE TO EAT. You will probably not be able eat solid food in a few weeks.  You are going to have to pound BOOST like a frat boy during rush.”

The surgical pathology report wasn’t exactly what we had anticipated. There were cancer cells where we didn’t want them to be and the final grade of this tumor was a lot higher than we thought going into all of this.  Sometimes, this bump in the road seems like a mountain. Sometimes, watching Kevin digesting what the next couple of months hold for him takes all of the air out of my lungs.  I have to remind myself to breathe and focus on the end game—restoring Kevin’s health!   I am buoyed by an anchor or love, prayers, support, encouragement, and HOPE!  Thank you for being our anchor.

 

PS- here is a video of two ladies fighting at a bus stop in Houston. 😂

Nov23

Big Prayers for Big Kevin-The Termination of Thurmo’s Tumor

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Big Prayers for Big Kevin-The Termination of Thurmo’s Tumor

It is the season for giving thanks and it is thanks that I will give.  First and foremost I am thankful for the Head and Neck ENT/Oncology Team at MD Anderson for skillfully

IMG_5983

It’s GO TIME

removing the tumor from Kevin’s skull base.  It was a tedious procedure that lasted over nine hours.  I am so thankful that the first step in his journey is behind him.  Although the tumor ended up being more virulent than we had anticipated, it is a huge victory that it had not invaded the brain!  This type of cancer is unpredictable and wily and that has my hackles up a little, but I am going to take one victory at a time.

Once the surgery team found a bed long enough to accommodate him, (insert, “we are going to need a bigger bed” here) the surgery went well.  When we were able to see him in Recovery, we were amazed at how good he looked.  He had some issues with his heart

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Sophi “watching our stuff”.  Great job Sophi.

rate being too rapid, but eventually he was moved to his room and that is when things got not so fun for him.  The pain and nausea hit him hard and because of the bones they removed and the grafting they did in his sinuses, the main focus of his hospital stay was for him to remain as still as possible to avoid a Cerebral Spinal Fluid leak. No standing, lying flat or higher than 30 degrees, no drinking through a straw, no standing, no bending, no straining at all and it was obvious he was going to be sick to his stomach.  Long story short, I showed my ass (just a little) about him not getting something for nausea and his pain, he got sick, he didn’t bust a leak and I didn’t hurt anyone.  He did have a horrible, terrible, painful, fitful, night.

With the new dawn, he seemed to feel a lot better. He rested off and on and was way more of a trooper than I would have been if I was tethered to the bed.  His main complaint was the nasty knots and open areas on his skull where they bolted his head in a vice to keep it from moving during surgery.  He had a pretty uneventful albeit uncomfortable day.  The night once again brought new adventures of pain and the new sensation of him experiencing  extreme vertigo when he tried to close his eyes to rest.  He

IMG_5987

If Cancer were as easy to wipe out as stains-Mom would be a miracle worker.

had another brutal and exhausting night.  I am not going to lie; being the pony companion to this steed on no sleep was wearing me down as well.  He met the new day today and was allowed to walk to the bathroom and sit up in the chair for a while.  He rested a little and Riley and Sophi worked a puzzle and ordered him lunch and supper. Mom, Ron, and Kim worked on logistics of travel plans.  I helped him ditch the hospital gown and got him into some comfy clothes.  It was a pretty good day.

This evening when they started to give him his antibiotic in his IV he told me it made him feel kind of sick.  A new night shift crew just came on and I may or may not have trumped up his nausea complaints and Phenergan was delivered IV and he is currently out like a light.  I think this is the most consecutive rest he has had and I might get a couple of winks in as well (win-win).  The doctor has postponed our departure from Houston from Friday to Sunday, but we are looking forward to coming home!

In my extended state of exhaustion I have managed to surf the entire spectrum of emotions these past few days.  There have been moments of joy, elation, relief which fluctuate with fear, anxiety, anger, frustration and immense heartbreak.  Trying not to crumble under the weight of bearing witness to his pain, fear and frustration has left my heart weary and my faith wobbly.  Watching my children struggle to tamp down their heartbreak and be brave for their daddy sometimes hits me like a swift kick to the gut.  But at the end of the day, we have so much hope for the future.  We know that there are literally thousands of people praying for his healing.  We have an entire community rallying behind this fight and paving the way for us to get him the very best care possible.  We have so very much to be thankful for this Thanksgiving.

As I sit here tonight and reflect on everything that has brought us to this moment, I sometimes feel like Peter after he called out into the storm to Jesus, “Let me come to you,” and Jesus says, “Come on, Peter, I’ve got this.”  I have faith to step out of the boat and trust Jesus to protect me in this storm, but then I look around at the wind, the waves, the clouds, the rain, and hail and I start to sink and it feels like I am drowning.  Me of little faith, sinking like the cinder block I am.  Without fail, I am reminded to focus on my faith and not the storm.  Those reminders have come in the form of instant messages, text messages, and hugs from my family, a song someone sends me and one very amazing email that I just happened to open in the darkest part of my night (thank you, Meg Reiner).  Thank you all for meeting our needs sometimes before we even realize what those needs are going to be.  Thank you all for carrying us on this journey, standing in the gap, having faith when ours falters, and most of all, for loving us.  We are truly and humbly thankful.

Cancer better find a bigger boat, because we are here for the long haul!

Nov15

The Journey Continues-Big Prayers for Big Kevin Update

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The Journey Continues-Big Prayers for Big Kevin Update

COULD SOMEONE KINDLY REMOVE THE TUMOR FROM MY HUSBAND’S HEAD???!!  Patience is not one of my strong points.  After countless scans, blood draws, biopsies and consults we finally have a plan!  Kevin and I will be heading to Houston tomorrow.  He will meet with a neurosurgeon on Friday, as well as have his pre-op tests completed.  Monday is the BIG day!  The plan is for him to undergo the operation laparoscopically and remove the tumor through his nose; sounds simple enough.  My sister is a nurse practitioner and she has retrieved rocks, beans and other small items that have been crammed into the nares of toddlers. Unfortunately, this is going to take a little more precise maneuvering.

This bastard tumor is big and it is growing. It has also cozied up right next to the bone that separates the sinus cavity from the lining of the brain. There are 206 bones in the human body and I think the asshat could have found a less critical place to make its home. Kevin has a huge big toe and a nice roomy armpit, but whatever. The good news is that the tumor hasn’t started growing in the brain, but they still have to drill into the bone and make sure that none of the cells have started trespassing in that direction. Evidentially, they can’t just reach in there with a clean set of needle nose pliers and yank and pull. Unlike the operation game, if they touch vital areas close to the tumor, Kevin’s nose will not light up red and an obnoxious buzzer will not alert of a failed attempt to retrieve the wishbone and the next guy gets a turn. It is smack dab in the middle of some pretty crucial parts. It’s complicated.

Following the surgery, he will have to stay in the hospital for three days, barring any complications, which I am not expecting any, so we are going with the three day plan. He will have to stay in Houston so they can monitor him for a few more days and then we get to COME HOME!! He will get to heal and chill for several weeks and then he will have to return to Houston for daily radiation for six weeks. I won’t get into the dirty details of that part of the journey; I am taking one day at a time. Sometimes I am taking one hour at a time. Sometimes one moment at a time…sometimes I get completely paralyzed with fear and worry that I have to kick myself into the next moment.

So now we have come to that point in the story that isn’t about Kevin, me, or even cancer. It is about all of you. Since this all started I have one priority and that is getting Kevin’s health restored. This man has a lot of living to do. He has daughters to give away (if we can get any suckers to take them) and grandbabies he hasn’t met yet and frankly, I am not done driving him crazy with my shenanigans (I have a lot of shenanigans left). I am usually the kind of person who doesn’t sweat the small stuff and when compared to Kevin’s life, worries about medical bills, housing during treatment, transportation, time off of work—that is small stuff.   When I let my mind go there, the small stuff started to add up to a virtual Tsunami and it was about to consume me. And then, like drops from an unexpected rain shower, blessings began to fall. Promises of prayers, hugs from people in Wal-Mart, folks selling T-Shirts and raffle tickets, generous donations of money and care packages and hospital survival packs—so much love and support pouring down. One dear friend even gave her airline miles to fly Sophi down to Houston to be with her daddy for the surgery. What I had perceived as a tsunami wasn’t a tsunami at all. It was blessing tossed into the shallows of our lives, each one making ripples upon ripples of love and we have been deeply touched by every single one.

It hasn’t been easy for us to be on the receiving end of such selfless giving of others. We felt bad, awkward, unworthy, ill-prepared and weak. I received a message one evening from a friend who found herself in a similar position. She reached out to me and said, “People want to help and you need to LET THEM.” She shared so much wisdom and perspective and I pray that she is aware of the beautiful gift she gave me in reaching out. We are humbled, we are blessed, and above all, we are eternally grateful.