Author Archives: heavysighsandsmiles

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.

Dec15

Traveling the Highway of Hope

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Traveling the Highway of Hope

There is little question that I am a child of God.  There is also little question that I am often a rebellious child of God…more of a toddler version of the virtuous being I strive to be.  I ask too many questions, I bristle at delayed gratification and I tend to squirm.  There is nothing in the entire world that makes me more apt to start questioning the good Lord, than being a spectator in the suffering of someone I love.  Serving as witness to the pain Kevin is enduring has the “why” word springing from my mouth before I even realized it has formed on my lips.  Then comes the forced deep breath…the ratcheting up of my big girl panties and willful focus on the bigger picture. 

Kevin had a rough morning with pain and that had me on the verge of a full-scale toddler temper tantrum.  I decided to dig around in the Good Book for some of biblical words of comfort or reassurance or HOPE.  My aimless wanderings led me quite literally to Romans 5:3-5-…We also rejoice in our sufferings, because suffering produces perseverance; perseverance character; and character HOPE. And HOPE does not disappoint us…” I am not suffering. Kevin is suffering.  I am struggling; struggling to hang onto the notion that at the end of his suffering there will be a mountain of hope.  Struggling not to question the cards that he has been dealt.  Struggling not to abandon my faith and resign to the bitterness and heartache that creeps around the edges of my soul. 

Kevin had his first night of being able to sleep last night, which he needed.  Issues with his blood pressure delayed him getting his blood pressure medication, so his pain became pretty intense.  The blood pressure finally auto-corrected and he was able to get some pain medication and some relief.  Many of you know the details of his current status, but for those who do not, here is the nitty gritty:

Starting from the top to bottom: 

  1.  He has a new flap in the right side of his upper palate and jaw.  It was made from the muscle and tissue of his thigh (we will get to that soon).  It is swollen and sore and bulky—essentially it is a thigh muscle that over the next several months has to learn to be a mouth/jaw muscle.  They removed three of his teeth, part of his upper jaw bone and a large portion of the roof of his mouth and rebuilt it from the excavated tissue from his thigh.
  2. In his right nose-hole he has a nasal trumpet, which is protecting the flap and is exactly what it sounds like—a trumpet shaped device that is crammed in his nose.
  3. In his left nose hole, he has a feeding tube stitched in.  He cannot have anything by mouth and he will have to get nutrition from this tube in his nose that leads to his stomach for the next few weeks.
  4. There was a nerve that was compromised in the malignant node and had to be taken. His mouth is droopy on one side. He has the cutest crooked smile and it may just be a smirk…it’s hard to tell.
  5. The right side of his neck has a variety of things.  The first being a large incision where they stripped the cancerous node and several of his other nodes.  It’s gnarly and has about 17 staples and a drain.  He also has a doppler cord inserted into his neck to monitor blood flow to his new construction.  There is a lot going on in his head/neck.
  6. His thigh is more extensive that we had anticipated.  He is cut from stem to stern the entire length of his thigh—and the man has a good bit of length in his thigh.  It also has a drain.
  7. He has to remain virtually upright at all times, and he is not to have any rotation of his neck.

So that is the big SUCK of what he has going on and I can attest…it is a lot.  I also can confidentially say that he has, in spite of his suffering, nailed the perseverance and the character referenced above, which only means that HOPE is a foregone conclusion for this remarkable man.  He doesn’t complain or grumble and he treats all the care providers with grace and gratitude…even when the care they have to provide is uncomfortable and often painful. 

Like all strong-willed toddlers, I too require little reminders from God that there is so much to be thankful for in the midst of all this chaos.  A walk down the hallways here at MD Anderson, is a not-so-subtle reminder that there is an army of folks with great character and perseverance marching toward that pile of promised hope.  There is no shortage of warriors here.  Opening up Facebook, I am reminded that there are so many who are on a similar journey.  There is one young child back home who is bravely battling this asshole of a disease and my heart aches for him and it breaks for his parents. The only thing I can imagine more excruciating than watching the man I love battle this beast, would be standing guard over a child doing the same.  The thought is unbearable and I am overjoyed at the outpouring of love and support for this family.  I know what it is like to being on the receiving end of such amazing love and it is nothing short of life-sustaining.

So, this leads me full circle from day that began with worry and angst to one of hope and gratitude.  Mr. Rogers is quoted saying, “All of us, at sometime or other, need help.  Whether we are giving or receiving help, each one of us has something valuable to bring to this world. That is one of the things that connects us as neighbors-in our own way.  Each one of us is a giver and receiver.”  This quote speaks volumes to me.  The most obvious is how amazingly blessed we are to have such damn good neighbors!  We have people from all over the country (and a handful in other countries) praying for Kevin.  This whole experience is like an old-fashioned barn-raising…friends, families, neighbors pouring out love, prayers, money, support of all kinds to make this treatment possible and to also make it bearable.  We are so incredibly humbled to be raising our barn in your neighborhood!  This quote also reminds me that I need to work harder at being a giver.  I don’t want to leave this world as one known for receiving more than giving.  Every text, call, note, prayer, donation… reminds me just how BIG you all love.  It also reminds me that I need to be better. 

There are not words big enough to express our gratitude.  Thank you for walking with us on this journey and reminding us of your constant love.  The road would be a lot longer and rougher without all of you walking beside us.  Roads can be tricky.  It is easy to get lost and turned around and discouraged.  Thank you for keeping us on the path, paving the way with hope, and pointing us in the direction of home. 

OUTTAKES: Just in case you were wondering if we were not finding moments of laughter in joy and ridiculousness:

  1. Sophi, Gavin and Riley stayed briefly in the hotel room below ours before Kevin moved to the hospital. Sophi came up to our room to hang out, but boldly entered the unlocked room of our next door neighbor. The gentleman was standing in his kitchenette and she hit him with the door. There was shock. It was awkward.
  2. We went to pick Gavin up from the airport and we thought we were where he was waiting. We had him on speaker phone and Riley says, “Gavin, I see you. You are looking directly at me. Walk to your right.” It wasn’t Gavin. The real Gavin was confused.
  3. Kevin and I were waiting to see one of his doctors. The nurse called out the name “Free-Derek”, “Free-Derek Washington.” An older black gentleman pipes up and says, “What did you say is the first name? I am Fredrick Washington.” (Kevin and I could not stop laughing and saying A-Aron).
  4. Kevin’s is bombarded by doctors coming into the room and asking him to do the same things, “Follow my finger with your eyes. Stick your tongue out and move it side to side. Can you smile for me?” After the same routine several times had played out and he complied like a trained seal, one doctor said, “Can you smile for me?” and he simply said, “NO”.
  5. Today I was going to give him a quick sponge bath (he can’t shower yet) and right when I asked, “Are you ready to get cleaned up?” I passed an abundance of gas. He replied, “I think you better clean yourself up.”
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.

Nov7

Cancer Comes a Callin’…again

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 Marylin Monroe once said, “Keep smiling, because life is a beautiful thing and there’s so much to smile about”.  It has been a long while since I have sat at my keyboard with the intent of cranking out the silly and sometime poignant antidotes that make up my life.  Perhaps it is the only way that I can fully process the heavy stuff and retain what little sanity remains, because life just got heavy and here I am– baring my soul…again.

Many of you are aware that five years ago my husband, Kevin, was diagnosed with a rare form of sinus cancer (olfactory neuroblastoma).  With an overwhelming amount of support from family, friends, the community, and even strangers, Kevin underwent successful treatment at MD Anderson Cancer Center in Houston.  For the past five years, we have faithfully made the pilgrimage to the cancer Mecca every six months for surveillance and each time we have returned home with a clean bill of health…until we didn’t.

Two days shy of the five-year anniversary of the first time we arrived in Houston, we received the news that we had started to believe we would never have to hear again…the cancer has returned.  What was supposed to be the eve of a five-day trip with our oldest daughter (Riley), boyfriend (Brandon), and his family, was a day of processing, absorbing, and adjusting our plans.  The next morning, we saw our fellow travelers off on their adventure and we remained behind to navigate several days of CT scans, biopsies, lab work, and catching up with the old gang (his surgeon, oncology radiologist, chemo doctors and the entire cast of Cancer Slayers—they are amazing folks, I just didn’t really want to hang out with them…again…ever. 

The facts are as follows:  The cancer has recurred in the same area of the sinus where is first decided to take root.  In addition, it has also decided to acquire more real estate in one of the lymph nodes in his neck.   This $hit is just not welcome in the neighborhood.  So, his team is currently devising an effective evacuation plan.  We know that this is going to involved another surgery and radiation therapy.  They are also testing his cancer cells to see if he is a candidate for immunotherapy.  So, now we wait…again.

While the weight of what he was facing was pressing down us, those around us had already started meeting our needs before we even knew what it was we were going to need.  Brandon’s family resides in the Houston area and they opened up their home, gave us gift cards for food, and let us use their car to make the trip each day to the hospital.  While we were establishing squatters’ rights in their beautiful abode and focusing on the plethora of appointments and logistics, our community back at home had already started circling the wagons.  Money was being raised, prayers were being said, phone calls and texts were being sent, and blessing were raining down on us…again.

I am a fairly good person, most of the time.  Kevin is a great person, period.  And the people who love him happen to be the most kind, generous, and all-around fantastic people in the universe.  It is easy in the dark of the night to let the worry and fear and the dread gnaw on the raw edges of my soul.  But Marilyn Monroe, was right, “…life is a beautiful thing and there’s so much to smile about”.   ALL OF YOU remind me multiple times a day how truly blessed we are…again.

I sat down to write out thank you notes to everyone who has donated financially to the expenses we will incur over the next few months…I ran out of thank-you notes and haven’t even made a dent.  It is overwhelming, humbling and extremely difficult to convey the immensity of our gratitude.  I am falling short…again.

Just in case you thought this sad-ass story wasn’t sad enough, there is icing for this crap cake.  Kevin developed a bad case of shingles that started on his forehead moved down around his eye, and if the way he is grabbing his ear today is any indicator, they are making their way there as well.  He looks and feels rough. 

So, I said all this to say he is down but not defeated.  Thank you for EVERYTHING.  We can see the love in action and we can feel the prayers lifted up.  He is going to beat this…again.

Dec30

Love in the Time of Covid

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Love in the Time of Covid

The world is nearly unrecognizable.  The divisions amongst us are wide and are lined with unforgiving sharp edges.  I haven’t had a lot of time for social media, which is probably a good thing.  I rarely share my political views with anyone, mainly because I am one of those square pegs that do not really fit solidly into either faction.  In fact, I made ONE comment on our way to the polls and my husband slammed on the breaks, turned the truck around and went back home and told me to find my own ride to the poll.  My husband is definitely not a square peg.  This post isn’t political; it’s personal.

First things first, I never wanted to be a nurse.  Nope.  It wasn’t for me.  Let’s face it, nursing is hard work.  I am not the nurse who loves to start IVs, insert tubes, or ponder if a wound should be packed or left open to air.  All the needles, bags and bodily fluids are not my passion, but the people…the people are what fuel my fire.

So here I am a card-carrying member of a profession, where I am mediocre at best, but still try and give it my all.  And then along comes COVID and my universe shifted.  I was not prepared.  Not only was I late to the party with the run on toilet paper, I had no idea what tribulation was about to unfold. 

I am fortunate enough to work in LTC communities, where most of our residents are in their golden years.  They are witty, wise and full of life.  They are not forgotten or overlooked; they are loved and treasured.  We have care staff that shows up each shift to meet the needs of these people, which even in the best of times is a difficult and demanding job.  These are not the best of times and yet they continue to come and they continue to care. 

There are so many moving pieces to what is happening right now.  I firmly believe that everyone has the right to his/her personal views.  Knowing that I am opening the door to an onslaught of harsh criticism and opposition, today I am choosing to share my experience.  We all have our own perspective.  This is mine.

It was the beginning of April when I was personally introduced to Covid 19.  Although we had plans in place and we had piles of PPE, it still managed to kick us in the teeth.  Being tasked to keep a vulnerable population safe and healthy is a tall order when there isn’t a global pandemic raging and when there is, it is a war.  Trying to battle an enemy that is ambiguous as this one is daunting—scary—formidable and just plain hard.

Since spring it has been uphill climb.  Our soldiers are discouraged, exhausted, and some have even chosen not continue into battle and with good reason.  Many have suffered from the virus and many still have lingering effects.   There have been many beloved people that we have had to say goodbye to far too soon and that is a sorrow that is heavy.  One doesn’t know just how heavy until you are the one trying to carry it around.  I know a lot of amazing caregivers who are lugging around an unmeasurable amount of sorrow.

 I respect everyone’s right to feel, act and think however and whatever one chooses.  I don’t stand in judgement.  But for those of you who feel the need to continually persecute those in the trenches I first ask you to consider what it means to do these things:

  • Work 8, 10, 12, 14 or 16 hours head-to-toe in gown, gloves, 2 masks and a face shield providing care for the sick and isolated.
  • Hold the hand of another human being, while she struggles for her last breath.
  • Bear witness to the agony as a family says a final goodbye to loved one through a closed window.
  • Peel off your clothes in the garage and sprint to the shower, knowing there is a chance that there is something lingering you could spread to those you love.
  • Balance on the tightrope of keeping people safe and searching for ways to bring them human contact and moments of joy. 
  • Look into the scared eyes of a dear, vibrant, wise and kind soul and try not choke on the tears when he asks, “I am not going to make it out of this, am I?”
  • Listen in disbelief as the masses cry ‘freedom’ and scoff that  only the elderly and those with underlying conditions are impacted by the virus and try to reconcile that reasoning with all the elderly, compromised, and folks with underlying conditions who are still productive, amazing, full of life and worthy of protection. 
  • Swallow the news that a person whom you laughed with, cried with, danced with and fought with all your strength to lead back to health has succumbed to the shrewdness of this virus.
  • Lay awake at night and question that you have done everything you could have possibly done to impede the spread, to preserve the health of those infected, to protect those who are not infected and to provide the best care for those who are sick. 
  • Accept defeat when you think you understand what this virus will do and what you can expect and it does another 180 and laughs in your face as you try to keep up.
  • Cry silently when care providers keep showing up, even though they are exhausted, weary and scared and accept there is no way to fully express the amount of gratitude for these caring souls.
  • Feel around in the unfamiliar spaces for the pieces of your heart as it breaks under the weight of this “hoax”.

These experiences are not uniquely mine, but are shared among throngs of health care providers, many to a much higher degree. My experiences are just a drop in the bucket compared to the battles others are fighting. I don’t want kudos or a pat on the back. I just wanted to share my perspective and the perspective of those who I have had the privilege to work alongside. I have learned a lot about myself during this journey and a great deal about loving others during almost impossible times. I have been fortunate that I have been able to provide care and comfort with Personal Protective equipment (PPE) supplies that have been plentiful. What I have found there to be a shortage of is EPPE (Emotional Personal Protective Equipment). There are plenty of N95 masks, gowns, gloves, and face shield to protect us and others from this virus. Yet, there my heart remains exposed and vulnerable to the pain, death, isolation, and fear this perpetuates. There is no PPE for the heart and sometimes that is the hardest part about love in the time of Covid.

Mar23

Being Human (From a Distance)

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Being Human (From a Distance)

There’s something in the air and it has turned the world upside down.  Regardless of your political position, religious affiliation, ethnicity, sexual orientation, social or economic status, the bottom line is we are in a pickle.  The common denominator that we all share is that we are HUMAN BEINGS.   As members of this Humanity Club, we are called to strive to recognize being human is sometimes difficult.  Humans can be mean, rude, self-centered, judgmental and careless.  I am guilty of all of these.  Fortunately, as human beings we also have the ability to be kind, polite, generous, accepting and prudent.  Some of us have to work harder at being a good human (guilty again).

On a good day, the world is filled with blame slingers, mud slingers, and shit slingers.  Let’s face it; the world isn’t having a very good day.  Now is the time for us to be better, stronger, and kinder.  I worry about my parents and other family members of a certain age and the parents of my friends.  I worry about my kids who are out in the world.  I worry incessantly about the residents in my Long Term Care communities and how we can keep them safe.  I worry about my sister who has an autoimmune disorder and my husband who is a cancer survivor.  I worry about my friend who was recently diagnosed with cancer and my other friends who are in the middle of battling cancer.  I worry about all the people I love who are on the frontlines taking care of others.  My faith should be stronger.  I am human, my faith is wobbly.

It is a strange time.  It isn’t about you and it isn’t about me, it is about BEING HUMAN.  It is putting us aside for the wellbeing of everyone.   I get it.  It is hard.  This social distancing is hard.  I love my husband and I love my dogs, but for the love of GOD…you get what I am saying.  For those of you who are geared to be completely content to curl up with a book or a marathon NetFLIX series or have a natural gift for napping—well GOOD FOR YOU.  I am sure you are embracing this “stay at home order” with gusto and grace.  For those of us who struggle with appreciating the finer art of relaxation, we need your prayers.

Hopefully my lessons with learning to do nothing will make you smile.

  1. Dogs don’t appreciate my singing. Yesterday morning I was singing a song (a Karri Thurman original by the way) about how we were all going to get through this together.  My daughter’s dog took her paw and whacked me right upside my head.
  2. Our hot water was out for several days. Kevin took a cold shower every single day.  I didn’t.  I chose to bathe with a makeup wipe and hope the issue would be resolved soon.  It wasn’t.  Kevin’s cancer has stolen his sense of smell and I hate the idea of showering in ice cold water.  He couldn’t smell me—no harm, no foul!  It is fixed.  I am clean.
  3. I am not a pioneer woman. All this cooking three meals a day is wearing me out.  Pre-Covid, if I made dinner three nights a week, I was killing it.  Now it is like I am Caroline Ingalls over here slaving over my Whirlpool!
  4. Puzzles are for people with stamina.
  5. Writing the lyrics to a number one Country and Western song is harder than you might think. Anyone know a word that rhymes with truck??  Yeah, I thought of that one.  I can’t use it.
  6. When taking a dog for a walk on the farm after days of rain, one must be prepared for the cattle guards. Carrying a 30 pound muddy dog over a cattle guard sucks a little of the joy from the adventure.
  7. Cheese popcorn is sexier than I am. I was changing clothes and was standing in the living room in my undies and Kevin comes around the corner with a bag of cheese popcorn. He says, “Whoa is it sexy time?” I reply, “Well, it is either sexy time or cheese popcorn time.”  His response, “There was a time I would have picked sexy time, but I am going to go with cheese popcorn for now.”
  8. The virus saved a crackhead. After beating on our door, a wayward “traveler” of sorts entered into our garage through the side door.  When Kevin confronted her, she said she was out of gas.  He told her barging in was a good way to get shot.  Then he put gas in her car (she wasn’t out of gas, she was going to steal our stuff)!  Kevin was home and intercepted her.  He is kind.  I would have panicked and shot her.  I watch a lot of true crime and I struggle more with being human than he does.  Side note: As head of security, I feel that Kevin needs to be more diligent about ensuring the doors are locked.
  9. Having 100% of the laundry done has not brought me the sense of accomplishment I expected. After decades of battling load after load of endless laundry, I thought that an empty washer, dryer, and hamper would bring me unspeakable joy.  Gazing into the empty hamper I am questioning everything.  Who am I?  Why am I here?
  10. Watching replays of sporting events can be a trigger. Evidentially, 28 years is not enough time for Kevin to get over Christian Laettner’s overtime shot in the Duke win over Kentucky in 1992.  He took it really hard…again.

The situation sucks.  Find joy where you can.  Wash your hands, be kind, and stay home.  Be patient with one another as we all grapple with being human.

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.

Jun5

‘R’ Words and Pinky Promises-Update on Big Prayers for Big Kevin

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‘R’ Words and Pinky Promises-Update on Big Prayers for Big Kevin

It has been nearly three months since I have posted an update on Kevin’s Cancer Chronicle and it isn’t because I haven’t tried.  Each time I try to sit down and quantify the galaxy of swirling emotions that have somehow become part of who I am, my check engine light comes on and my cognitive gauge nears redline status and I have to shut it all down.  Disclaimer:  it doesn’t take a lot to redline my cognitive abilities and I have been running with my check engine light on for years.  Kevin has been the one dealing with all the physical discomforts, fatigue, weight loss, sinus irrigations—his eyebrows fell out for crying out loud, yet I am the one who is one molecule of water short of my fuel rods overheating and going into complete nuclear meltdown, but that is kind of how we roll.

On May 11th we traveled back to MD Anderson to get the first of many post-treatment tests and scans.  We flew out Friday morning and his first appointment was that afternoon.  We arrived at Houston Hobby Airport and went to Baggage Claim to get our bags.  The first bag came out right away and I unquestioningly   took it and stood out of the way while Kevin waited at the carousel for the tardy bag.  He grabbed it and we headed to meet our Lyft and soon were on our way to the Medical District.  About 15 minutes after leaving the airport, my cell phone rings.  It was the airport calling for me to return to the airport to retrieve my bag and return the one we took by mistake (heavy sigh).

Me: “Kevin, did you grab the wrong bag?”

Kevin: “I don’t know. I didn’t have my glasses on.”

Me: “Sh#t!  Will you go in and swap bags?”

Kevin: “Nope.  It has your name on it.”

Me: “I am going to tell them that it was your fault.”

Kevin: “I don’t care what you tell them.  I am pretty sure whoever’s bag we have is pretty ticked. I will stay with the Lyft.”

Me: “Chivalry has fallen on its sword and died a cruel and brutal death.”

Kevin: “What?”

Me:  “Nothing.”

Needless to say, the man waiting for me to return the suitcase with the uncanny resemblance to ours (minus the nice leather name tag on the handle with HIS name and address on it) wasn’t impressed with the striking resemblance of our bags or my humble apology. Being greeted by his gruff attitude,  I momentarily wished I had riffled through his bag so I could say something snarky like, “Your prescription for Viagra is almost due for a refill” or “I see you are traveling alone, so I am assuming those lacy pink panties in the bag are yours”.  But I restrained myself and smiled and took my bag and refocused on the mission ahead.

Because of the luggage snafu, we ended up heading straight to the hospital with our bags in tow and up to the 10th floor for his first of many appointments, the first being with his surgeon.  She did the scope up the nose that was magnified on a big screen.  I recorded the carnage, because it is phenomenal what she retrieves.  I won’t post the video, because although it is fascinating, it is not for the squeamish.  He did have a staph infection and got some new medicine to add to his daily regimen.  She recruited him for a study related to his experience with olfactory neuroblastoma and he got her blessing for the next ninety days.

The remaining days were filled with visits to the audiologist, MRI scan, oncology dentist, eye doctor, neurologist, dietician and finally, my personal favorite the Oncology Radiologist.  They were all tasked to document his “new baseline” in all the pertinent areas the radiation and/or cancer may have impacted.  I seriously only came to Houston for them to tell me that the cancer was all gone and all the hell he had endured was worth it, because he was cured.  Over the several days I anxiously awaited for the ‘all clear’ and with just one appointment remaining, this is all I knew for sure:

  • His MINOR hearing loss is low-tones and his primary hearing loss remains selective in nature.
  • He can see, but not well enough to get the luggage off the carousel at the airport without his cheaters.
  • He’s lost a lot of weight.
  • He has retained his mental faculties (although he forgot the paper he was supposed to turn into the neurologist and during the exam went blank on ‘as many words as you can think of that begin with the letter R), which I thought would have lowered his score, but according to Kevin, he passed with flying colors.
  • He can’t really smell much of anything.
  • His taste has returned to about 75%, but he can’t do carbonation and things don’t taste the same.
  • He needs to wear sunscreen to protect his skin.
  • He will continue to have dry mouth.
  • He will have to continue to irrigate his sinuses a few times a day for a long time.

I KNEW ALL OF THIS WHEN I GOT TO HOUSTON!  I was slowly losing my patience and I just want someone…anyone (preferably in a white coat with a medical degree) to look me in the eyes and speak the words, “It is gone.  It’s all over.  Go home and be happy.”

We hit his last appointment as we were headed to the airport to go home.  So, once again, we lugged our bags into the hospital.  By this point my anxiety level was creeping up to meltdown level and I may have gotten a tad bit sassy with the physician’s assistant by curtly outlining that I came to Houston to get confirmation that the cancer was gone and all we have been told is that his ears work, he can see, his mouth is dry and he has passed his neurological exam with flying colors, with the exception of spontaneously regurgitating word that begin with the letter R, which MAY or MAY NOT be a side effect of the radiation, which by the way, starts with the stupid letter R; then maybe I can do that other ‘R’ word—RELAX!    But CAN SOMEONE TELL ME THE TWO WORDS THAT I NEED TO HEAR, WHICH BY THE WAY BOTH START WITH THE LETTER C—CANCER and CURED??  Note: this version of my rant has been edited for explicit content , but resulted in the physician’s assistant giving Kevin a fist bump and said, “I have been doing this for twenty-five years and I have never heard anything like that in my life.”

The good news is, the MRI was NEGATIVE for evidence of cancer—the major area of concern was the lymph nodes in his neck (where this cancer likes to relocate), which were clear.  HEAVY, heavy, HEAVY sigh.   Thank God.

So, now what?  What’s the plan?  Is it gone?  Are we good?  Is he good?  Can we go?  Does he get a bumper to bumper warranty?  I sort of need all of this in writing.  I would settle for a confirmation of continued good health sealed with that unbreakable forever solemn sign of good faith—a pinky promise.  Doctors don’t do pinky promises…they do 90 day reprieves.

We headed home on the tail of great news that there is no sign of cancer in his sinuses or the lymph nodes of his neck, with orders to return in 90 days to do it again and again in another 90 days and so-on. We come to more words that start with the letter R—RETURN and REPEAT, but for this moment and above all—RELIEVED.

pinkyWe settled into our version of normal (which has never been quite normal) and there a long portions of my day, when I don’t worry about cancer.  There are moments when I am so immensely thankful for his healing that I feel my faith is unshakable.  But then there are times that I hear him cough or he gets up too fast and loses his balance and the waves of worry crash into me and I find myself asking several times a day, “Are you okay?” and “How are you feeling?”.  I wake up and listen to him breathing in and out and try to build a fortress against this maggot of a disease taking root in a lymph node or a lung or a kidney, by willing it to be so.  If only love cured cancer…  If only doctors made pinky promises.

What I do have is today and I will cling to it with every hope and expectation that tomorrow he will continue to get stronger and someday this will all be behind us.  Kevin may be hitched to a wife with wobbly faith, but he has been bolstered in prayers and support that surpasses anything we could have ever imagined.  There are so many people that have met our needs, often before we knew what our needs were!  There is not a platform big enough to express our sincere gratitude.  I know that I have slipped behind on sending out thank-yous to so many and I am so sorry.  Please know that we owe where Kevin is today to not just the amazing care of the doctors in Houston, but also to the outpouring of prayers, love and support of our family, friends, and community, who made his treatment possible.  We are truly blessed beyond belief, which is the next best thing to a pinky promise from a cancer doctor!