Grounded

Treatment for G’s MDS began on October 5th.  Every morning at 10:00 we arrive at the hospital Infusion Center, and G receives three injections of Vidaza after icing the intended injection site.  The injections are given subcutaneously into fatty tissue.  The nurses wear a surgical mask, gown and thick gloves while handling the toxic chemo drug.  They rotate sites using the back of G’s arms and abdomen.  The sites turn red and hot within a few hours.

The chemo is playing havoc with G’s digestive system causing constipation.  He was embarrassed to discuss this with anyone except out of necessity.  Nurse Susie recommended MiraLAX.  G mixes a little of the tasteless powder into juice, and he’s good to go.  (No pun intended.)  Within a couple of hours the magical powder does its thing.  Problem solved.  Other than that and some soreness at the injection sites G is tolerating the Vidaza.

Today was the last day of his 7-day injections for this month, but G still has to report to the doctor’s office every Friday for a blood draw so his counts can be monitored.  We also have an October 23rd consultation with the bone marrow transplant center in Atlanta.

At first, we thought we could continue travel.  But moving will be complicated by the need to transfer care to other physicians, start the new patient process again, get insurance approval for drugs at each new physician’s office to continue treatment, etc.  We can no longer just choose a destination, pick a campsite and hit the road.  Plans to winter in Florida are on hold.

Slowly we have realized that we have been lassoed and tethered.  We’ve been grounded.  It’s as though the wheels have been stolen off our fifth-wheel.  The gypsy lifestyle that we’ve enjoyed has abruptly ended.  We no longer have the freedom to hitch-up whenever we like and take off on another adventure.  Our lives are now controlled by the need for constant medical attention in order to manage the G’s MDS.  Part of me wants to throw an immature temper tantrum as I view this as a negative.  The other half of me remembers that God orders our steps.

“A man’s steps are directed by the Lord.”
~ Proverbs 20:24

“In his heart a man plans his course, but the Lord determines his steps.” ~ Proverbs 16:9

 “I know, O Lord, that a man’s life is not his own; it is not for man to direct his steps.” ~ Jeremiah 10:23

But we’re also grounded in a positive way.  As Believers in Christ, we are grounded in our faith because of the love of God.  By now, we know that resistance is futile when God “meddles” in our lives.  I know that the best things to do are: 1) Thank God for the situation because He knows all about it, 2) Trust Him while going through it and remember that He will never forsake us.  Over time I have discovered that following this formula leads to the path of peace and joy.

“I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith.  And I pray that you, being rooted and grounded in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge – that you may be filled to the measure of all the fullness of God.” ~ Ephesians 3:16-19

Extremely Foul and Incredibly Close

We wake to a horrible lung-searing, nose-hair-singeing stench.  G groans in abject misery and claws the CPAP mask off his face.  He has sleep apnea and uses a CPAP machine nightly.  The malodorous odor has permeated his mask and is trapped within.  I grimace and dive beneath the covers.  Huck Finn has dutifully made his daily predawn deposit in the litter box that now sits literally two feet from our bed.

Since his return we have struggled to integrate Huck Finn back into our family.  However, living in a fifth-wheel with a cat has created a major problem.  Our prodigal son is recovering from his year of riotous living, so we don’t dare let him outside yet, and we no longer own a house with a yard; we park in campgrounds.  A litter box sits in our walk-through bathroom in front of the door to the tiny laundry closet which is right next to our bedroom.  In these close quarters there is nowhere else to put it.

“Do you want me to get it or will you?” I mumble from beneath the quilt.

“I’ll get it.” G replies swinging his legs over the side of the bed.

Feline waste has to be one of the most wretched smells in the entire world!  This is one of the reasons that G and I are not cat lovers. 

G quickly scoops out the offensive mass and whisks it away – far away – outdoors.  I stay beneath the covers.  It isn’t safe to stick my head out yet.  The air still reeks with a noxious odor.  I hear the whir of ceiling fans working frantically to suck out the foul air.  A few minutes later the fans cease, and I cautiously poke my head out from underneath the quilt.

“That’s no way to wake up in the morning,” G grumbles.

“We need to rethink this,” I agree.

Each morning since Huck Finn’s return we are awakened by the vile smell and unwittingly tread barefoot across unseen Tidy Cat granules that he has tracked across the bathroom floor.   

So, G and I put our heads together and came up with a new plan.  Before bedtime we’ll move the litter box out to the kitchen and place it in front of the door – well away from our bedroom.  The added bonus is that it will also protect us against home invasions.  Intruders will be stopped in their tracks, die from the miserable, concentrated stench and fall backward out the door.  We won’t even have to shoot them.  We’ll sleep better and be protected at the same time; a win-win situation.

Lately, we have been pondering the question of how many of his nine lives Huck Finn has used up, and we are secretly wondering how soon he will be leaving on his next adventure.

The Adventures Of Huckleberry Finn

Huck Finn on the farm.

"Hello, ma'am.  I have your cat," the male voice said on the voicemail message.

My phone was on speaker.  G and I exchanged startled looks and burst out laughing in unbelief.  Huck Finn was alive and well!  With all the intense medical stuff going on lately this piece of news sent our hearts soaring.  What a wonderfully startling, unexpected, uplifting event this was!

Let me start at the beginning.  Huckleberry Finn and his brother Tom Sawyer were our barn cats on our horse farm in Georgia.  Now, G and I are not cat lovers, but we needed a couple of hunting cats to keep the varmints out of our horse barn, so that's how we ended up with two cats.  Somehow or other Tom and Huck got under our skin, and we ended up being quite fond of them.

They were half grown, scrappy kittens when we got them.  They each managed to get torn up a few times from tangling with critters a bit too large for their size learning the lesson the hard way.  Life was good on the farm and eventually they became a good hunting team and best companions.  They were the friendliest, most comical and loving, farm-smart pair of barn cats we'd ever met.

In preparation to sell the farm we found homes for our remaining horses.  We were down to Gus the Golden, Duncan the Westie and Tom Sawyer and Huck Finn.  Sadly, Tom Sawyer was snatched one night by a coyote. 

The rest of us moved into a rental home for a year, and out of necessity we turned Huck Finn into a house cat.  He was smart and caught on fast to proper house manners and used a litter box in the garage, but he never lost his wanderlust.  He would often jump the seven foot yard fence and disappear for a day of adventure, but he always returned.

Then Gus developed cancer and only Duncan and Huck Finn remained.  Once we bought the fifth-wheel we realized that RV life would never suit Huck Finn, so he went to live with G's son Pete and wife Ali.  After only three days at the new place Huck the renegade gave Ali the slip and disappeared into the woods never to return.

We were all really crushed and distressed that eleven-year-old Huck Finn's fate might be to live out the end of his life as a stray.  Ali set out a live trap in her yard and managed to catch every stray cat in the area except Huck Finn.

Huck Finn escaped wearing a green collar with brown polka dots and a tag bearing his name and my cell phone number.  I knew he was skittish of strangers, but I hoped one day out of necessity he would befriend strangers who would call me with news of his location.

The call came thirteen months later.  We hopped into the truck and drove one hour and 45 minutes to Carrollton, GA to see if we could retrieve our rascal.  We figured he'd be half wild, ragged and skinny, flea and worm infested and hard to get our hands on.

We arrived at the location which turned out to be some sort of half-way house.  A bunch of young men lived there together, and they had all been very kind to Huck Finn taking turns feeding him table scraps for the past 2-3 weeks.  One of the guys (Casey) who'd finally noticed the tag dangling from Huck's collar was the one who'd left the voicemail.

Huck was sitting on the picnic table in the back yard as big as life not a bit afraid of the guys milling around.  His once green collar was now faded out to a white.  One of the half-way house guys simply picked him up and placed him in G's arms.

Huck Finn didn't look too bad.  In fact, aside from being skinny he looked darned good and seemed pretty tame...until G tried to stuff him in the cat carrier.  Off into the woods he fled.

My heart sank.  "Lord," I thought, "Did you bring Huck Finn back into our lives to temporarily cheer our hearts just to dash them again?"

We waited.  I sat down at the picnic table and talked to Huck Finn as he skulked around the perimeter where woods met yard.  I was hoping he recognized my voice and remembered us.  Huck edged toward me.  I kept coaxing him.

"Nobody moves," I warned.

Huck rubbed up against my leg.  I slowly reached down to pet him and worked my hand toward his neck.  In a moment I had him by the nape of his neck.  We used a butt-first tactic this time to stuff him into the crate and succeeded.

Huck Finn is now an RV cat.  He seems to like his new digs.  Duncan the Westie and Huck Finn recognized each other straight off.  Huck has managed to retain his proper house manners, seems remarkably tame, is clean and uninjured, and I can't find a flea on him!  We're fattening him up, and next week the vet will check him over.

Now that we're all back together it's as though time and distance never happened.  Huck definitely knows us and is happy to be back in the bosom of our family.  It's as though he never left.

If Huck Finn could talk I wonder what sort of adventures he'd tell.  I guess he was tired of living on the lam and just decided to surrender.

Twelve-year-old Huck Finn cuddling with G.

Welcome home Huck Finn!

A Life Of Value

We went to the hospital Infusion Center at 9:00 am for G’s blood transfusion.  He was placed in a comfortable, reclining chair in an alcove, and blood was drawn in order to be “typed.”  We were advised that the entire process would take about six hours.  Fortunately, this same facility had matching blood for G, and by 10:30 he was receiving his first unit of blood.

I had plenty of time to observe the staff and activity in the Infusion Center.  The different alcoves housed mostly cancer patients receiving chemo infusions.  An Asian woman across the unit was napping during the procedure.  Her tiny frame was snugly wrapped in a white hospital blanket up to her chin.  She was all tucked up into the recliner wearing a warm knit hat with the soft brim pulled low over her brow to keep her head warm and hide loss of hair.  Her dark eyes were visible above the surgical mask worn to protect from infection.  She appeared tired and sad, and I noted that no one was sitting with her.

The staff was skilled and efficient, but beyond that they were personal and empathetic.  They wore their care and concern like they wore their skin.  It came natural to them.  Here finally were humans who recognized that bodies were individuals, personalities and lives of value.  They understood that it is important for patients to be seen and heard and to be treated as valued living souls with a purpose. 

Nurse Dena teased and cajoled G about being a Georgia Bulldog fan.  It didn’t help that G was wearing shorts and a hat with his favorite college football team’s emblem and colors loudly proclaiming his loyalty.  She was a Georgia Tech fan, and she was mercilessly threatening and humorous.

While checking G’s vitals she placed a digital thermometer in his mouth.  “Do you know the difference between an oral and a rectal thermometer,” she asked.  “Taste,” she informed him before he could form a reply.  “How does that taste?” she asked with a sly grin.

Throughout the day she brought him ice water and a hospital “happy meal.”  The box consisted of a peanut butter and jelly sandwich, chips and ginger ale.  She offered him coffee, a blanket, a kick in the butt.

By the end of the first unit of blood G’s color had returned and he was having no adverse reactions.  The hours swept by nearly unnoticed as G’s buddy Kirk sat with us and “shot the breeze.”  We made a run to the cafeteria for food and shared stir fry and a roast beef sandwich, tried to solve all the world’s problems and watched the life blood drip into G’s vein.

A Second Opinion

We went to see an oncologist for a second opinion.  It wasn’t because we doubted the hematologist’s initial diagnosis or ability to treat G.  It was because we had difficulty understanding her accent and were not satisfied with the trail of stingy crumbs of information she was dropping.  She left us mostly in the dark.  There was more we needed to know.  For the love of God; we are adults!  We needed the whole picture presented to us!

Perhaps it was her culture that shaped her to be emotionless and robotic or the fact that English is not her first language.  Maybe the emotional disconnect comes with the territory when dealing with nothing but blood and bone marrow disorders and cancer.  Perhaps it’s all of these.

When G asked her about a bone marrow transplant (the only cure for myelodysplastic syndrome) she said it was "a bad idea because of his age;" no more explanation than that.  It appeared she was willing to write G off at age 68. 

We needed something more.  We needed her to recognize G as a valued life, as a living soul with a purpose.  God values all life, and so do we.  No life is expendable; not the unborn via abortion or the neglect of aging senior citizens.

“Are not two sparrows sold for a penny?  Yet not one of them will fall to the ground apart from the will of your Father.  And even the very hairs of your head are all numbered.  So don’t be afraid; you are worth more than many sparrows.” ~ Matthew 10:29-31

Armed with medical records, test results and a list of questions we met with the oncologist for a second opinion.  He reviewed G’s recent medical history.  With the investigation already complete he just had to devise a treatment plan.  I had a list of questions which I meant to ask – questions that the hematologist left unanswered.  I never had to present them because the oncologist covered every one during the consultation.

He was full of helpful information.  We even learned about the International Prognostic Scoring System (IPSS) which helps oncologists predict a patient’s prognosis.  Using all of G’s data from his blood tests the oncologist determined that G’s score is 0.5.  This represents Intermediate-Risk associated with a median survival of 3.5 years.  In this subgroup of patients, 1/4 will undergo evolution to myeloid leukemia (AML) within 3.3 years.  With treatment G’s life could possibly be extended beyond this number.

The oncologist’s Plan A would have been to first treat G with erythropoietin (EPO) shots.  Erythropoietin or EPO is a hormone produced by the kidneys that controls red blood cell production. It is a protein signaling molecule for red blood cell precursors in the bone marrow.  Even though G’s kidneys are already producing EPO well above the normal range, the oncologist believes EPO shots would have helped.  However, our insurance denied approval for EPO shots.

Plan B is to treat with Vidaza, an anti-cancer chemotherapy drug.  In simple terms, Vidaza will interfere with the chemistry of G’s DNA and allow his red blood cells to mature.  If G is responsive to this drug it will manage the MDS and prevent evolution to AML for as long as his DNA remains responsive to it.  However, at some point we were warned that G’s DNA will figure out it is being tricked and will begin to resist the drug.

The oncologist’s first order of business was to schedule a blood transfusion since G already has cardiac issues.  G’s hemoglobin has dropped to 7.2 and should be 14.  The oncologist said, “We don’t want you having a heart attack while waiting for treatment.”  Finally G is going to be transfused!

Near the end of the consult the oncologist called the bone marrow donor center and asked them to schedule an appointment for G.  They will be calling us with an appointment date and time.

By the end of our consult with the oncologist we both felt that we preferred him and decided the hematologist needed to be “kicked to the curb.”

"Keep me as the apple of your eye; hide me in the shadow of your wings."

~ Psalm 17:8

"He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart."

~ Psalm 91:4