Tag Archives: storms

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.

Off Road Parenting-Because Kids Don’t Come with a GPS

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Off Road Parenting-Because Kids Don’t Come with a GPS

evan4Parenting is a journey, of sorts. The moment I would see those fuzzy distorted mugs in the ultrasound pictures, the hopes and dreams of the little underdeveloped gummy bear would begin. Dreams of future scholars, athletes, musicians, or humanitarians begin to unfold. I always dreamt big when my children were in utero. God always had something special planned for dealing with the preconceived notions I had of the children I had not yet met as well as my aptitude for being a mother. In both cases, I have a feeling that my higher power was laughing to himself, because what I believed and what I found to be true were two entirely different things. Parenting my girls has been, at times, challenging. However, parenting my son, Evan, has been exhausting.

He was born early in the morning the day after our first anniversary and he was 8 pounds and 2 ounces of adorableness. His appetite was monstrous and it hasn’t really slowed down much over the last 18 years. As an infant, he was golden. He evan3slept well, ate better and was content the majority of the time. The closer he got to being a year old, the more something seemed amiss with my boy. When he was 10 months old I attended a Pampered Chef with Evan in tow. There were several women packed into a small living room and they were fawning over him and squeezing his irresistible chubby cheeks. Evan began to hyperventilate, gasping for air and wheezing. I rushed him outside into the cool night air and he immediately calmed down and began to breathe normally. When I tried to rejoin the party, he began to breathe rapidly and wheeze with every breath. I was sure my baby had asthma. My baby didn’t have asthma. I didn’t know it at the time, but when Evan was 10 months old, he had his first of many panic attacks.

I had heard of anxiety, but I was completely unaware the debilitating capacity it could have on its victims. There was a tremendous lack of understanding on my (and Kevin’s) part about dealing with a young child with an acute anxiety disorder. We struggled, we faltered, and finally we accepted.

The Struggle:

We wanted him to be like all the other kids. Other kids were busy doing kid things. They were laughing, playing sports, going to school, and doing so without any apprehension. Anything outside of his immediate comfort zone (home) produced a evan6visceral reaction that left him crying, shaking, heart racing, and sick to his stomach. There wasn’t any amount of reassurance we could offer him that would ease his distress. We coaxed, begged and made promises of great reward if he would just “TRY”. If only we had known how hard he was trying.

There has been a long history of trial and error with medications, behavior modification and various attempts of discipline. It is a strenuous plight attempting to fit a square peg into a world of round holes. Regretfully, in doing so, I failed to recognize all the uniquely wonderful attributes of my handsome square peg.

There was a time when I thought we would lose him. His battle with anxiety and depression left us standing in the gap when he wasn’t sure he could make it through the dark valley. I have no way to know the battles that have waged in his soul; I just know I am so very thankful he chose to fight.

The Sometimes

Sometimes, I am accused of letting Evan’s struggle cloud my decisions regarding what is best for him. I have been accused of spoiling him, letting him get away with things I shouldn’t and not being tougher on him. I take complete responsibility for living up to most of these accusations. As evan1a parent trying to discern how hard to push a child who has been so close to the edge, I feel that the judgments of others standing in anyone’s shoes other than mine are simply a reflection of good intentions. I can tell you honestly, that even the best intentions don’t stick when they are thrown at a situation from any distance. In order to get things to stick, you wade out into the muck of the matter.

Sometimes, I want to choke him. He can be a real handful and this has nothing to do with his anxiety or depression. He has broken my heart and disappointed me time and again. His tendency to find shortcuts, expend zero effort and completely leave his gifts and talents unutilized in any conventional sense are things which have caused me many sleepless nights. In those ways, he is a lot like his mother.

The Seasons

evan2Today Evan graduated from high school. There were many days I didn’t think I would see him standing on that stage, accepting his diploma. I have seen this young man through the many seasons of life and now he is standing on the cusp between being a child of progress and a man of promise.   I know the depth of his intelligence and the strength he is capable of harnessing.   I pray that when he looks inside himself that he will recognize the man God created him to be and the courage to see the design through to completion.

Although we have walked through seasons of storms, there is no question the absolute sunshine Evan has brought to my life. His brilliant wit, imagination, and the ability to charm the pants off a rattlesnake have been a vital heartbeat in our lives.   Kids don’t come with GPS and Evan has often been an off-road adventure, but I haven’t regretted one minute of the trip.

To My Son:

  • May you always know you are loved.
  • Happiness is never found in things…true happiness is in the moments we share with one another.evan8
  • Invest your time and love in others, it pays unbelievable dividends.
  • Be quick to forgive.
  • Continue to be kind to those less fortunate.
  • Real men cry, kiss babies, change diapers, open doors for ladies, love Jesus, and hug their moms in public.
  • Always admit when you have made a mistake. Accountability is part of being human and so is making mistakes.
  • Don’t let the world define you.
  • Keep your promises. A man is only as good as his word.
  • Work hard and always give any task your best self.
  • Play hard.
  • Be kind.
  • Look for the positive in every situation and cling to it.
  • Always know that I am so thankful that God gave me a son and that son is you.

All My Love-MOM