Tag Archives: Community

Nov27

Stepping into the Light

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

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

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

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

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

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

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

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

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

Mar22

The Omission of Remission-Words Matter

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The Omission of Remission-Words Matter

 

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

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

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

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

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

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

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

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

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!

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

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    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.

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

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It’s GO TIME

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

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

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Sophi “watching our stuff”.  Great job Sophi.

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

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

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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.