Tag Archives: Community

Kevin’s Cancer Journey- The Rainy Season

Standard
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.

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

Standard
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!

The Journey Continues-Big Prayers for Big Kevin Update

Standard
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.

 

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

Standard
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.