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

IMG_5984

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.

 

Nov4

First Leg of the Journey-Big Prayers for Big Kevin (Update)

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First Leg of the Journey-Big Prayers for Big Kevin (Update)

Greetings from the Lone Star State!  The Cancer Crusade left St. Louis on Thursday and arrived safely in Houston.  Friday was a long day for the patient (and his entourage) with a busy schedule of registrations and more testing.  Although Kevin had a lot of tests kev2leading up to his diagnosis, MD Anderson does all their own testing.  It is obvious that these folks are the experts and we were anxious to get the process going.  Kevin had another biopsy, which is currently being analyzed by their pathologist.  He also had more labs drawn and then a marathon MRI.

Friday he was also seen by his main doctor, Dr. Shirley Su, who is not only adorable, but brilliant and one of the few experts in the bitch-ass trespassing type of cancer that has called squatter’s rights and established residency in Kevin’s sinus cavity.  If anyone can deport these illegal alien cells, I am confident it is her.  Bonus track—she is also from Australia and I LOVE to listen to her talk.  She is a small woman of Asian descent, but I fully expect her to slap him on the shoulder and say, “No worries, mate.  We will have you back to being just a big healthy bloke in no time.”

Her initial impression is that the cancer was caught in the early stages, but is waiting on the test results to confirm the grade and stage, which will determine the actual course of treatment.  She nearly guaranteed surgery (removing the tumor, drilling into the brain to make sure the little jackass cells haven’t migrated, and removing the healthy tissue or margins around the tumor), but the unknown is if it will also include radiation or chemo or both.   We had hoped that Kevin would be able to get the surgery completed during this trip, but unfortunately that isn’t going to happen.  Apparently, when people come from all over the world to seek cancer treatments, there is a high demand for the experts and Big Kevin requires two—Dr. Su and a neurosurgeon.  Despite what I think, Kevin is not the only patient here and there are some logistics involved (insert sassy wife eye-roll here).  He has to endure a couple more weeks of not being able to sleep or breathe.

So really the update is- there really is no update.  MD Anderson is an AMAZING place and there is no doubt we he is exactly in the right place.  Being here has dialed down my panic a few notches and I am a little more at peace with getting him better and keeping him that way!

The only thing more amazing than MD Anderson is the love, support, and generosity of ALL OF YOU!  For those of you who know me, you know that no matter what I am feeling or thinking there is little or no guesswork involved.  Kevin, on the other hand, is geared quite differently.  To say that he is laid back and even keeled is probably an understatement.  In fact, I have witnessed extreme displays of emotion (anger, sadness, etc.) maybe 10 times in the two-plus decades we have shared.  As the messages of hope, concern, encouragement and support have rolled in, it has hit our big guy in a BIG way.  More than once over the last few days he had to put his phone away, completely overwhelmed.  It is pretty hard to piss Kevin off, but it is even harder to make him cry and he probably won’t like me spilling the beans about his “leaking eyes”.  There is no way I can express what a positive impact the community rallying around Kevin (and his family) has had during a time like this, nor could I begin to convey how the display of love and support has left him in awe of “all the fuss” over him.  There are no words worthy enough to express our gratitude (I even used my thesaurus).

Kevin will resume his appointments with his doctors on Monday and hopefully we will soon learn what the treatment plan will be.  Thank you in advance for your continued prayers.  There is no denying that God is at work in a BIG WAY and personally, I am expecting Him to come through in a BIG way!  With that being said, those of you who send me text reminders of God’s promises and God’s love, please don’t stop.  It keeps the tendency for my prayers of gratitude and faith escalating into sassy and angry rants to a minimum.  Kevin is good and I remain a work in progress.

Oct29

Big Prayers for Big Kevin

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Big Prayers for Big Kevin

There is a line from the John Wayne movie In Harm’s Way: “All battles are fought by scared men who’d rather be someplace else.”  It would seem that this statement can be applied to all sorts of situations, but it struck a chord with my heart.  Even though I am not a man and the battle on the horizon is not mine to fight, but I am utterly scared to death.

Nearly a year ago my husband, Kevin, had a seemingly routine sinus infection.  It was treated with the standard combination of antibiotics and steroids and it did get a little better.  Several weeks later, it flared up again and the treatment was repeated, but it never completely resolved.  Advil Cold and Sinus, Mucinex, Flonase were used relentlessly with little or no relief.   Eventually, he was having such difficulty sleeping due to the chronic congestion he returned to the doctor, which resulted in a failed sleep study and a referral to an ENT.  I would like to put it on the record that Kevin DOES NOT LIKE to go to the doctor, so he didn’t go to the ENT right away, he sniffled and blew and popped Advil Cold and Sinus for the sinus headaches.  The congestion had progressed to the point of him not being able to breath from the right side of his nose.  He was miserable and so he went.

I returned home from a business trip for my brand new job and Kevin reported to me that he had seen the ENT (who also happens to be our friend) and was sent for a CT scan. “A CT scan,” I had asked, “what does he think it is?  Polyps?”  Kevin told me, “He isn’t sure what it is, but he doesn’t think it is a polyp.”  So what does any wife do in this situation? Of course, I Googled. The results of my ill-advised Googling actually made me feel better.  I soon learned that the risk of having sinus cancer is extremely rare ( 1% of cancers are in the sinus cavity).  I have one message for Google, “Screw you, Google and your false sense of wellbeing.”

The results of the CT scan revealed a mass in right sinus cavity.  This was followed by a completely horrific MRI experience to rule out the erosion of the orbital bone and possible invasion of the brain.  Much to our immense relief, this was not the case.  The biopsy followed the next morning and after a brutal bloody retrieval, the tissue samples were sent off to pathology.  I had already hung my hat on the sound medical advice rendered by Google and was confident that the results would be benign.  So we settled in for the 2 or 3 days for the test to come back.

The results didn’t come.  I started getting a little nervous and started texting our friend the ENT, “Hey, it’s me, have you heard anything yet?”  After being told that the results were still not ready, my texts started to escalate from nervous to borderline hysterical.  My nurse brain started to bully my Google brain a little and my worry was compounded by further delays.  The biopsy was sent to a special ENT pathologist in Louisville and then more tissue slides were requested.  I tried to stay positive, but I knew in my heart the news was not going to be good.  Unfortunately, I was right.

Esthesioneuroblastoma, (aka olfactory neuroblastoma) was the official diagnosis.  Have you ever heard of it?  Well, if you have, then you are among a very small circle of either very smart or very unlucky people.  As it turns out, it is one of the rarest types of cancers on the planet.  Our big lovable Kevin had better odds of getting struck by lightning TWICE than developing this rare breed of cellular proliferation.  I made it from the doctor’s office to the truck before I fell apart and my fear engulfed me.  As we drove home, I looked over at Kevin through my tears and he sat quietly and bravely digesting the news.  Par for the course he prevailed as the logical bulwark in the face of crisis and I remained his never failing maniacal ball of hysteria spewing sidekick.

It is hard to conceive how truly blessed one is until you find yourself in the valley and are simultaneously lifted up in love, support and prayers by family and friends.  Holy kevandevcow!  We are extremely lucky.  But sharing the bad news with our kiddos and watching those sweet hearts break was almost more than I could stand.  Our two oldest, kevandrileyEvan and Riley had been kept fairly abreast of the unfolding situation, but it still didn’t soften the blow.  But Sophi is in Medical School in Kansas City, and we didn’t want to cause her any additional stress than she is already under. She came home and we were snuggling in bed with her late on the night of his diagnosis and while trying to be as positive as possible, Kevin told her he had cancer.  I have been witness to few things I kevandsopfound more excruciating than watching a kid who loves her daddy like Sophi loves Kevin crumble under the weight of something so heavy.

So, this blog post sucks big fat hairy buffalo balls. Personally, at this point, I was floundering and didn’t really know what to do.  My step-dad, Ron, found me hiding in the basement the day after his diagnosis, paralyzed by helplessness.  He asked me what I was doing and I told me that everything was going to be okay.  I promptly responded by bursting into tears and sobbing, “But he’s my best friend.”  It was then Ron took the wheel and I have never felt such relief in my life (Ron and I have a long history of struggles over the proverbial wheel, but I have never been so willing to give him the controls).  While I was hiding in the basement worrying about everything from possibly losing Kevin to affording treatment, he had researched hospitals, treatments, and specialist and was ready with a plan.

We will be leaving in a few days to travel to Houston, Texas to MD Anderson Cancer Center.  They are one of the few places in the country who have treated this type of cancer.  We are scared, but we are hopeful and ready to get him better.   I have teetered on being angry at God and now I am lying.  I have been really angry at God.  Kevin is a much better person than I am, he’s a wonderful husband, the greatest dad to our children and my very best buddy.  He lost both of his parents when they were much too young and he has endured a great deal.  Kevin isn’t one to share his feelings or express himself quite as demonstratively as I do, but I know he is scared, as are all men heading into battle.   A little over a year ago, I had a breast cancer scare that turned out not to be anything at all.  During that time, he assured me that everything was going to be fine.  However subdued, however subtle, this text exchange is just one example of how big he loves:

message

 

 

Please keep him in your prayers.  We are expecting all kinds of miracles.

Jan6

Saying Goodbye to One Fine Ass

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Saying Goodbye to One Fine Ass

festus6Winnie the Pooh said, “How lucky I am to have something that makes saying goodbye so hard.”  This quote sums up exactly how the folks around the Thurman farm have been feeling this week.  The legendary, elderly, clever, entertaining, dirty, scruffy, arthritic donkey, Festus, gave up the ghost yesterday and took a little piece of our hearts with him.

Festus was my hero from day one.  It has been nearly five years since our family left the town life and migrated to life on my husband’s family farm.  The horse and I got off on the wrong foot and I had a turbulent relationship with the mice who invaded my kitchen.  There was the incidental barn cat breeding fiasco, the introduction to the electric fence, and there remains a cow who stalks me and constantly tries to start shit with me.  But Festus, we were tight from day one.  Upon being introduced, I was told how his main function on the farm was to keep the coyotes away from the cows. I don’t know if this is just crap they were feeding me because I don’t really know the truths and myths of farm life, but I didn’t care.  There is only ONE thing I hate worse than that bitch-ass mean cow and that would be coyotes.  I knew right away Festus and I were going to be fast friends.

Festus was old; at least 35.  He was an old ass, but also a wise ass.  He couldn’t get around very well the last few years, his old bones were stiff.  The spring may have been gone from his step, but that ornery twinkle was there until the end.   Here are just a few of the highlights of our friend, Festus:

  1. Peppermints were the way to his heart. The old ass loved apples, carrots, and sugar cubes, but nothing made him happier than when someone trudged out to the field with pockets full of cellophane wrapped peppermint goodness to share with him.  And nothing pissed him off more than when you showed up empty handed.  He was an ass with expectations.  After nuzzling pockets upon approach, he would quickly determine if you were bearing gifts worthy of his company or if you were a human disappointment to be ignored.
  2. He was well equipped. When the little twin cousins, Carter and Caden, were visiting the farm, they excitedly announced to their mom, Jody, that Festus was having a baby.  In additional conversation with the little fellas, they announced that “Festus had a leg sticking out of his belly, so he MUST be having a baby.”  Imagine how hard it was explaining to them that is was not a leg but rather his giant donkey dong.  Old Festus set the bar very high for these youngsters.

    Carter and Caden with Festus

    Carter and Caden with Festus

  3. He was not afraid to use what the good Lord gave him. Festus was really old. He walked stiff-legged and preferred to lay around in the sun most of the time.  His range of motion was limited and so he didn’t move around a great deal and he certainly didn’t move anywhere fast.  Except that one time…when the neighbor’s Jenny (that is what they call girl donkeys FYI, not her actual name. I don’t think Festus even got her name) was all hot and bothered and prancing her fine ass on the other side of the fence.  Perhaps in his prime he would have jumped the fence for this fine piece of Jenny, but he was way past his prime.  He did, however, manage to barrel through the fence, have his way with the sultry temptress from greener pastures, and then collapse in his post-coital bliss.  The only thing he was missing was a cigarette.  He was so tuckered out by his escapade Uncle Bob had to drive to the neighbor’s farm and load his bad ass on a trailer and haul him home.  Festus was not ashamed and he got more than one, “Atta boy, Festus” from my son, husband and other male inhabitants of the farm (filthy animals).
  4. He sometimes had to say he was sorry. On not one but two different occasions, Jody encountered Festus when he wasn’t on his best behavior.  She claims that she was giving him treats and he bit her.   Jody is a farm girl and knows how to saddle and ride things and drive tractors. She knows how to round up cows and raise steers and all that jazz.  So, she definitely knows how to give an ass a treat.  I talked to him after the first incident and he said he was sorry.  After the second time, I started to think she was either showing up without the proper treat or using peppermint scented hand lotion.  Festus wasn’t mean, but as stated above, he had expectations.
  5. He always was excited to see you. It didn’t matter if you hadn’t visited in a day or several weeks, Festus greeted you with his one of a kind, high decibel, uniquely his own, welcome bray.  While I could try to explain it to you, there really aren’t words to adequately do it proper justice.  You can click on the video below to experience a greeting Festus style.  Loosely translated, he is saying:  Hello, my friend.  I have missed you.  I love you.  You better have peppermints. Get over here and hug my shaggy ass”:

 

 

Festus, you were one fine ass.  Thank you for making us smile.  You will be missed.

 

festus4 festus5 festus3

Sep25

Partly Sunny with a Chance of Cancer

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Partly Sunny with a Chance of Cancer

 

The fact that I am 44 pisses me off. I might look 44, but I rarely feel it and even less than rarely act like it. It is only when I have to dig my readers out of my bag so I can read a menu or someone asks me my age and hearing myself verbalize the truth always sounds strange; that age belongs to someone else—someone old. Then I have to get real with my aging self. There are signs all around me that I am no spring chicken. I don’t dare jump on the trampoline without completely emptying my bladder first. I have to pluck more areas on my face than just my eyebrows and if that isn’t bad enough, I turn down the radio in the car when I want to talk. WHO AM I?

It may be part of my internal denial and my hopes to cling to the youth I once had, but often I don’t take time to ensure that my ‘old lady’ medical checks are done routinely and regularly. If my body was an automobile, it would not get the routine maintenance, fluid checks and changes, or the occasional diagnostic checks. Nope. I just kick the tires and turn up the radio to drown out any clanks or knocks.   This is exactly how I ended up way behind on my annual health checks (and when I say way behind, I mean several years, not months).

A couple of weeks ago I was rarely not traveling for work and folded under the intense pressure by my husband (who is also not as young as he used to be) to get my wellness exams caught up. I showed up to complete the well-woman’s circle of life maintenance check. They looked in my throat and under the hood and checked the pipes and that all went fabulous. I ended the fun-filled day with a mammogram relieved to finally have all of it completed. What I wasn’t expecting was the call I received shortly thereafter—We need you to come back in for an additional test. There was something suspicious on your mammogram. And just like that, things just got real.

I spent the next week out of town with work and tried to tamp down the word “suspicious” that kept slipping out of my subconscious and tap dancing all over my conscious. It is really hard to focus on work when you have an ambiguous word tap dancing in your brain. I arrived home and went for boob-smash ‘take two’, which led to yet a THIRD boob smash a couple days later. Boob smash number three was the equivalent to having someone fold my right titty into an Origami swan and then secure it firmly into a vice grip. The whole thing gave “titty twister” a completely new meaning, with the end result being that it wasn’t the end at all.

I was scheduled for a needle-guided surgical biopsy the next morning. The good news is that I was asleep for the “surgical biopsy” part. The bad news is I was wide-ass awake for the “needle guided” portion. Holy God, a little GHB or chloroform next time, please! I should mention this included mammogram number FOUR, and a big needle, and a Styrofoam cup taped over a wire hanging out of my boob? It was all kinds of glamorous. In addition, I had my husband, and Mom and Stepdad with me, which would have been appropriate if I was having a heart transplant, but holy cow it does feel good to be loved.

And then we waited. Waiting was difficult enough, but I was scheduled to fly out of town for work and so I had to wait 700 miles away from home. I do try and plan ahead for these situations. Unbeknownst to her, I had put on my initial paperwork that any and all health information could be shared with my sister, Kim. She called me early in the week to ask if I had heard from the doctor.

Kim:   Have you heard from the tests?

Me:        I am not calling.

Kim:       Yes you are. We have to know.

Me:       Yes, we have to know, but I am not calling. You are.

Kim:       What the hell? They won’t tell me anything.

Me:        I already signed a consent saying they could tell you anything.

Kim:       You are shitting me.

Me:        I shit you not. I can’t hear bad news from the doctor. If it is bad I need you to tell me.

Kim:       I hate you.

Me:        I know.

Kim:       I love you.

Me:        I know.

 

She called and we had to wait a few more days before the results were finalized. In the interim, I didn’t sleep much. I prayed a lot. God always knows when I am in trouble. I am so predictable. I also inventoried my life and the way I live it. My life is a continuous battle to keep what is important at the forefront. My little priority ducks are a bunch of bastards that I can never seem to keep in a row. I consistently fail at being present in the moment and I had to have a suspicious something show up on a mammogram to remind me that I don’t have an infinite amount of moments. I still have so many damn ducks to wrangle. At some point in my existence I want to present my wily-ass little ducks to the world in a complete and unified row.

Later in the week:

Kim:       Hey! How are things in Texas?

Me:        Mostly sunny with a slight chance of cancer.

Kim:       (sobbing)

Me:        The results are negative, aren’t they?

Kim:       (sobbing) Yes!! And now I can breathe again. (I knew if it had been bad news, she would never had let me hear her cry. She, too, is predictable).

Me:        Thank you!

Kim:       I hate you. Don’t ever do this to me again.

Me:        I love you.

Kim:       I know.

Cancer is a beast and I have seen mighty warriors fall to its ruthlessness. I will not pretend that I was not scared shitless. I am NOT a warrior. Hell, I can’t even keep my ducks in a row.   My days of kicking the tires and running on empty are behind me. I came away with a heck of a scare and a right boob that looks like it might belong to the Bride of Frankenstein. But those are two outcomes for which I have boundless immense gratitude. Life’s forecast can change without warning and I am blessed beyond belief with family and friends with whom I can find shelter, when there is even a mere threat of a storm. The truth is, I probably won’t ever get my shit completely together, but I will bet my right boobie that I won’t miss another mammogram!

 

 

 

 

 

Jul20

The Security Breach at Breakfast

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The Security Breach at Breakfast

There was a time not so long ago that the avoidance of national and world news by my sister, Kim, was viewed by me as bordering on irresponsible. I would ask her opinions on a crisis, mass murder, or natural disaster and she would respond with, “I have no idea what you are talking about and I don’t want to know. So, shut up.” Recently, I have started to envy her ability to close herself off from the world that seems to be unraveling. It seems to be open season on human beings killing one another has had me considering looking for real estate under one of the secluded rocks she likes to hide under. The world is a scary place.

One would think that with all the headlines screaming violence, I would be extra vigilant in protecting myself, my family, and my home from the volatile world. In many ways I am. I have educated myself on gun and personal safety and I have obtained my Conceal and Carry permit. I have purchased a firearm I am comfortable carrying, handling, and shooting. While traveling, I try to be aware of my surroundings and not put myself in vulnerable situations. But Sunday morning, when a homeless young man showed up on my porch asking for a drink of water, my heart overrode my brain and I invited him inside for breakfast.

He couldn’t have been more than 20 and he had a heavy pack and a long road ahead of him. It wasn’t just hot; it was MISSOURI sticky-sweaty-humid-as-hell hot. When I went outside and handed him a couple bottles of water he was very grateful and thankful for my offering and as I watched this kid turn back toward the highway, it never crossed my mind that this shaggy-haired tattooed kid with more than one piercing was a serial killer or an axe murder. All I saw was a kid who probably needed something in his belly and so I called after him, “Hey, are you hungry?”

After offering him a seat at the table, I made him a plate of biscuits and gravy, something to drink, salt and pepper, etc. His only request was a napkin which he placed in his lap. While he ate, I asked him where he was headed and if he had any family in the area. I didn’t want to pry. It was obvious this kid had a story, but it isn’t my story to tell. He ate. He said very little.

Things really got interesting when I went to the bedroom to give my husband, Kevin, a heads that I was feeding a wayward stranger breakfast. He was not overcome by the warm fuzzy feeling of helping out our fellow man. In fact, I believe the emotion I identified reflected in Kevin at that moment was: completely pissed off. We had a rare and heated exchange in whisper voices:

Kevin: What in the hell were you thinking?

Me: I don’t know. What was I supposed to do, let him starve?

Kevin: NOT invite him inside the house would be a reasonable thing to do.

Me: I had to invite him in so he could eat biscuits and gravy.

Kevin: You know better!!! I can’t believe you.

Me: ….

 

In all my arguments with Kevin I end up sounding like a toddler, especially when confined to whispers. It is hard to really sell a good point in ‘whisper voice’. Kevin went into full protector mode talking briefly with the young man and seeing him on his way, all the while keeping our .38 in his pocket. He made sure the kid made his way down the highway and proceeded with the following: Complete perimeter check, locked and secured all doors, reviewed the security modus operandi with the kids for locking cars and doors, emphasizing the point that someone had breached security protocol and so we were all going to have to be EXTRA vigilant for the next few weeks (followed by an accusing stare at me for my reckless behavior).

I went about my day justifying in my own mind what I failed to articulate to my husband. Later that afternoon, I asked if he was still angry at me for inviting a potential murderer, terrorist, puppy kicker inside for breakfast. He assured me he was not mad, but I had to promise not to do it again. I was compelled to try and justify my actions and I probably should have just made my promise and kept my mouth shut.

Me: Kevin, I traveled thousands of miles around the world to feed hungry children in Africa! Do you think I could just let a kid starve on my front porch?

Kevin: Of course not, you invite him in and feed him biscuits and gravy. We will see what a good idea it is when he comes back and kills us in our sleep and steals all our shit.

Me: …..heavy sigh.

Kevin is right the world is a scary place and I could have very well invited danger into our home. I appreciate his ability to protect us and keep us safe. I do hope that in some small fashion he finds a way to appreciate the innate flaw in me that allows my heart override my head in some situations. The truth is, I am so caught up in my own crazy life I neglect so many opportunities to make a difference in the lives of others. My focus has gotten so blurred that it has become easier to see only what I don’t have and I have become blind and complacent to the abundance of my blessings. I hear the news, read the headlines, and I become consumed by all the things that separate us. I needed a reminder of the one thing we have in common; at the end of the day, we are all just human beings.

heartPerhaps the good Lord sent that young man to my door to remind me that I need to look for opportunities to lift up others around me. Perhaps, it was God himself coming to the door as a scruffy homeless kid to see if I would give him a drink or turn him away. Truly If nothing else, I can rest easy knowing that had I been chopped up by the biscuit eating guest, I would probably go to heaven (the way I am quick to anger, cuss like a sailor, struggle with envy and pride and occasional slothfulness I need all the help I can get)….AND if it was God testing us, I fed him biscuits and gravy and Kevin covertly held a gun on him while he ate them (I am still winning). We make a great team– I can try and save the world and he can try to save me from the world…and myself…and coyotes….and spiders…and BigFoot… I think this text he sent me says it all:

murder