Tag Archives: olfactory neuroblastoma

Nov7

Cancer Comes a Callin’…again

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

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

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

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

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

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

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

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

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

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!

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:

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