Tag Archives: Gratitude

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.

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.