Wanted Alive! Reward!

Something is missing.  We have offered a reward for its' return.  It must be intact and functioning if found.

Doug's taste buds have taken a hike.  We have searched under the bed, in the refrigerator, in the yard, in the neighbor's yard, but no taste buds to be found.  I even searched Nicole's bag.  Just in case.  Most food is bland and cardboard tasting to him.  We are offering a reward for the return of the misplaced taste buds.  The reward is a double chocolate gooey filled cake topped with fluffy whipped cream and a cool cherry on top.
 



While searching for the long-lost taste buds we have discovered things in multiple places around the house.  Hair!  It appears the good doctor was correct.  Doug is losing his hair.  We find follicles of hair in the shower, on the pillow, hiding on the couch, even peeking out from his beard.  I do not know how long it will take for all the strands to fall out.  It is a massive head.  If his hair suddenly decides wave a white flag and surrender all at once, his mom may be the proud owner of a new hairy carpet!

Thursday we showed up at Mayo for Doug's appointment with the Oncologist.  Only to discover it had been changed to October 8th.  Two weeks!  We were stunned.  The pathology from Des Moines and the one that Mayo took did not totally match.  So they are doing more testing to make sure to have the correct formula for the chemo.

So we continue to wait.  Doug seems to be a bit more symptomatic.  He coughs a bit more.  Is sometimes short winded.  He feels as if the lung mass has grown.  This waiting is going to have me pulling my hair out.  We may end up back in Iowa with two naked heads!

Our relief this week was the arrival of Nicole.  While she did not help me paint the kitchen ceiling (which I have not completed yet.  Words to my mother-in-law:  I will!!!) we passed the time playing board games, eating, and doing a lot of laughing.

We have lived in the Jacksonville area twice during our married life.  It has been a source of comfort to attend our previous church.  We have seen old friends and made new ones.  Riverside Avenue Christian Church always was and still is a welcoming, homey, peaceful place. 

The upside to this week for me was my grandcats.  Robby bought some special wet food for them.  I was allowed to give them just a small portion.  He cautioned me not to give them too much or they would be plump like my Bo kitty.  (He gets a bad rap.  He is actually muscular!)  They gobbled it down while I stroked their shiny coats.  Then Mindy laid down with me for a nap.  That is until Doug peeked his head around the corner.  I could hear her thoughts; "Oh yeah.  He's here too.  I like him better."  And off she went.  Grandma will give them wet food no more!

Our week ends with Doug and I at loose ends for several days.  What do we do?  We go home, of course!  Monday we will hop on a plane headed for home sweet Iowa.  Stand by my sweet kitties.  Mommy and Daddy are coming back!

Pr. 18.10-The Lord is like a strong tower, where the righteous can go and be safe.  GNB

Seven Down!

Seven radiation treatments down.  Three more to go.  We are anxious to keep this ball rolling and head down the road.

Doug's radiation treatments are one minute, if that long.  We spend 40-90 minutes getting to the hospital.  Then another 40-90 minutes getting home.  He has not really had any side effects.  He still has his hair.  The doctor seemed a bit surprised at that.  I don't think she realizes how much hair is on that bowling ball on his shoulders.

Occasionally Doug has a "moment."  Just some pressure on the forehead.  He chills on the couch for these "moments" then is back in the game.  The doctor says this is normal  We prefer to think of these moments as cancer cells losing their grip and dying away while the new healthy cells abound with life in their place.

One disadvantage of radiation to the brain is Doug really shouldn't drive.  So I am driving.  No big deal unless you are a male species sitting in the passenger seat.  Men should never be allowed to sit there.  They should be gagged, blindfolded and sent to the rear of the vehicle.

Actually Doug has been an ideal passenger.  He doesn't seem to mind the back pocket marks on his hands.  He has only slapped his palms over his eyes a handful of times and muffled a scream once or twice.  We are coping.

As for me I am keeping busy.  The Cinderella Syndrome continues.  This week I have been on the roof not once, but twice.  Doug positioned the ladder for me.  I had my foot on the first rung when his mother came barreling out of the house.  "What are you going to do?"

"Your roof needs a good sweeping and I'm going up," I replied.

"Oh Lord!" she cried.  "I'm going in to cook!"

The door swung shut behind her.  I jumped up and down with joy.  Not only would I get some exercise sweeping, but there was sure to be some good chow to eat afterwards.  I wondered what it would be; a crispy stir-fry? A spicy mango-salsa chicken?  A colorful southwest pasta salad?  My stomach growled in anticipation.

Doug's mom has numerous large oak trees that shed sticks and acorns at the slightest whisper of a breeze. Her roof was not too large.  I figured this would be a fifteen minute job.  Then the strangest thing happened up on that roof.  It grew to Buckingham Palace proportions right before my eyes!

The next day a large green branch decided to plop on the roof.  Up I went again.  I could see many of her neighbors roofs had stick and acorn problems also.  Perhaps Doug and I should start a business here.  He positions the ladder (I can not seem to do this for whatever reason) and I sweep.

Inside I am taping her kitchen in preparation of ceiling painting.  A few years ago Doug wrote on her ceiling.  (It's a long story.)  Nicole arrives tonight.  Maybe I can enlist in her help.  "Poor old mother being slave-driven by the evil grandmother.  Daughter should feel sorry for me!"

Doug has met up with another school friend.  She is in the area visiting her parents and is also a patient at Mayo.  People come from all over to this world renowned hospital.  His friend traveled from New Mexico.

We enjoyed a supper with an old Navy friend and his family.  Their daughter was once in my preschool class.  Now she is old enough to drive and much taller than I am.  Why is it kids get older, but we don't?

The visitors continued with the arrival of Doug's cousin from South Carolina.  Doug missed his family reunion last year.  He has not seen this cousin in probably five years.  It is always nice to catch up and to have a distraction.

So we keep busy and wait for radiation to finish.  Thursday we meet with the Oncologist.  Hopefully he will have completed all the testing they are doing and we will have a chemo plan.  Then maybe, maybe, we can go home.

Doug has received many cards, prayers, and texts again this week.  Even one from someone we did not know, but attends church with my cousin.  We are humbled by all the thoughtfulness.  It is difficult to put into words how much this boosts our spirits and comforts our soul.  Thank you one and all.


Pr. 17.22-Being cheerful keeps you healthy.  It is slow death to be gloomy all the time.



*I really do like my mother-in-law.  Just don't let her know that.  It might lead to an enlarged head.  We can't have that.  And she is still letting me use her garbage disposal!

 

Zapping the Brain

Time passes slowly as one waits for answers and a course of action.  Doug and I are fortunate we have friends and family to speed our time along.

Labor Day weekend loomed ahead of us.  Nothing to do, nowhere to go.  Doug's sisters and their families rallied to the rescue.  As well as an aunt and uncle and cousins.  They packed up the kids and husbands and BBQ smokers (yum!) and headed north for Orange Park.  We feasted and chatted and made doughnut videos for Nicole.  (This will soon become a Gravel Road blog.)  Doug's friend and family from preschool spent an evening with us.  Yes, some people still have contact with preschool friends.  In fact, Doug was in his wedding twenty-two years ago.  (Happy Anniversary Matt and Sandy!)  It was memorable.  Doug had slashed open his finger while sharpening the lawn mower blade two days before the wedding.  It made great pictures with Doug's middle finger tightly bandaged straight up!  Robby and his girlfriend hung out with us old parents on Monday.  We even scored with Robby cooking us dinner that night.

Then the second week at Mayo began.

We were anxiously awaiting the results of his bronchoscopy from last week to determine if he was a surgery candidate.  The surgeon relayed the disappointing news he was not to have surgery.  The cancer was in one of his lymph nodes above the lung.

It was off the see the radiology oncologist.  She also had news that left us with a heavy heart.  The current MRI showed two new masses in Doug's brain.  That meant the cyber-knife radiation was off the table at the moment.  We needed to address the whole brain.  (And with Doug's large cranium I imagine that would be some dose of zapping!)  "Can you start the radiation treatment this afternoon?"  the doctor asked.

"Oh Yeah!  We could have started it yesterday if you had asked."

It was an early start at Mayo that morning.  We left the house at 5:00 a.m.  After some testing and doctor visits we had a few hours to kill before the treatment started.  It seemed a waste of time to drive the 25 miles back to his mom's house.  So we did what all parents must do...use the key to your son's apartment.

Robby was at school.  We had the entire apartment to ourselves.  Including his nasty black cats.  Yes, nasty.  I gave them treats.  Which they ate.  Then the ungrateful things hissed at me!  I fixed them by stretching out on the bed and snoring for a while.  They were too scared to sleep with me.  Ha!  Then to my utter disappointment, they decided to like Grandpa Doug and played with him.

Doug has two radiation treatments down.  Eight more to go.  He got a hair cut today.  Less hair to fall out and clog the drain.  He has not experienced any side effects from the radiation.  We do not anticipate him doing so.  He's strong and healthy and a bit stubborn.   Just in case, the doctor has put him on a type of Alzheimer medication.  That should keep his cognitive skills in place.

As with all things, when it rains it pours.  Both of my parents have taken a fall in the past two days.  Luckily nothing was broken.  Hospice brings the x-ray machine to their house.  They don't have to venture out to the cold sterile hospital.  

The ray of sunshine for the week is my mother-in-law.  She is treating me with kindness.  When the garbage disposal needs running she calls for me.  Those of you who own a garbage disposal do not understand this exhilarating concept.  Since a garbage disposal is AWOL from our house it is a constant thrill to grind up food and have it rush down the drain.

Week two is past us.  We are anxious to return home.  Our souls have been lightened by the outpouring of support, notes, phone calls, and prayers from our friends around the country.

Once again we find ourselves waiting.  Waiting for radiation to be finished and a chemo plan put in place.  As always one day at a time...



Pr. 17.17-Friends always show their love.  What are brothers for if not to share trouble?  GNB

Cinderella!

This ends our first four days at Mayo Clinic here in Jacksonville, Florida.  I'm not sure what I was expecting except something better than what we had.  I was not prepared for the onslaught that met us.

Mayo has a moat.  Well, not a moat exactly.  There are a couple dozen ponds and fountains surrounding the complex.  I was surprised to see eyes peering at me from one such pond.  I grabbed Doug's arm in terror.  "There's an alligator in that pond!  Do you suppose they feed them the naughty patients?  We must be on our best behavior!"

We were prompt to our 8:00 appointment.  People were going in seventeen different directions.  Everyone seemed to know where they were going but us.  Our first stop was registration and a couple paperwork stops.  All very efficient.  Then up to see the oncologist.

While in the waiting room I could hear a man snoring.  (Yes, it had to be a man!)  Behind us was a screen.  I glimpsed some recliners with patients relaxing or sleeping in them.  A nurse appeared beside the snoring man with a warm blanket.  I jumped to the conclusion she was about to cover his face and gag him.  However, she delicately placed the blanket over him and tucked him in.

Another nurse ushered us into the examining room.  She informed us the fellow would be in shortly.  I thought is was beyond belief that she would call the doctor fellow.  Then a woman, a very pregnant woman, breezed in announcing she was the "fellow."  Oh.  A doctor student of sorts.

After talking to us and taking notes, she returned with the "real" oncologist.  A large authoritative man.  He had reviewed Doug's records and had a plan.  A plan that required more testing and possible routes for treatment.

We were whisked off to see the radiation oncologist a few floors down.  She also had Doug's records and scans.  Her and her resident asked more questions and took more notes. She also asked if we would like to see the scans.  We had not seen any and were anxious to do so.

We were told in Iowa Doug had about a two and a half inch mass in his lung.  Our mouths fell open as we saw almost all of his left lung was covered.  How could he breath?  He has been laboring outside with the push mower and chain saw.  How was that possible?

The radiation oncologist devised a tentative plan in her head on how to attack Doug's massive brain.  She also saw some things on the MRI that were not mentioned in the report from Des Moines.  However, this doctor would meet with the tumor board to decide the final course of treatment.

One educated brain is good.  More than one can only lead to the correct path.

Our next stop was the lab.  I'm convinced the lab is housed in a space ship.  The frosted glass doors slide open and shut.  People disappear behind them and may or may not reappear.  I was waiting for someone to come out and shout "Beam me up Scottie!"

The next three days were a blur of more testing.  They shoved a microscope down Doug's throat and did an ultrasound of the inside of his lung.  Tissue was aspirated from the lymph nodes above the lung.  Another day Doug passed a breathing test with flying colors.

Now we wait for next week to have all the results and a definitive plan.

Amidst all this testing my mother-in-law was pampering us.  Not!  My new name became Cinderella.  Her sun room tile had just been replaced.  Now things needed to be cleaned and put back in order.  Plants needed to be re-potted.  Sticks needed gathering and weeds needed uprooting in 96 degree temperatures and 156% humidity.  "Cinderella!  Cinderella!"

In all honesty, she allowed me to help with chores.  It is therapeutic.  It makes time pass.  Time at the moment is passing like syrup dripping from a maple tree.

Once again we wait...


Pr. 15.22-Get all the advice you can, and you will succeed; without it you will fail. GNB

And Hiccups?

 Doug's headaches were a thing of the past thanks to the medicine "Dr. Underwear" prescribed.  He said the only side effect could be insomnia. 

Then the hiccups started.  They lasted anywhere from ten minutes to forty five minutes.  Further research on the all knowing computer showed they also were a side effect to the medicine.

That was all it took to send me diving off the steep cliff I had been teetering on.

"You have the hiccups?  Why do you have to have the hiccups?  You can't sleep.  You have the hiccups.  This is not fair!"  I ranted and raved and went on and on.

Doug looked at me like there were cats crawling out my ears.  "I have cancer and you're worried about the hiccups?"

The next day our wonderful PA prescribed something to make the hiccups take a flying leap off my cliff.  We continued to wait for the call from MD Anderson.

Waiting is never easy.  But with cancer hanging over our heads, or in our head, it makes time pass like the pot watched waiting to boil.  But it does pass and the saga continues.

MD Anderson did get back with us.  They would be happy to see us on  September 18th.  Three weeks!  Not totally acceptable in our little heads.  That's when people who knew people came out of the wood work.  Our PA called and attempted to speed up the process.  She did get us moved to the top of the wait list.  Really, who in their right minds would cancel an appointment at MD Anderson?  My sister, the nurse, knew someone who works there.  A third grade friend had a connection she was willing to try.  Still we hit a hard brick wall.  We would have to chew our nails for three more weeks.

The questions was "What do we do now?"  The obvious answer was, "Have a nap."  If you can't fix it or change it, why not sleep on it?

Doug is a ten minute napper.  I, on the other hand, drift off into peaceful slumber for 20 minutes to three hours.  It's always a mystery.

My eyes eased open after a restful nap with a cat at my feet, a cat at my knees, and a fur-ball snuggled under my neck.  It was heaven!  Doug was already up and about some where.

I discovered him in the office.  He looked at me and pronounced "Pack your bags.  We're going to Florida!"

Huh?  Did we have a tornado while I was sleeping?  Did the house fall on me?  Was the Wicked Witch awaiting in the wings to torture me?

None of the above.  Doug had been diligently working on other avenues of care.  He phoned Mayo Clinic in Rochester, MN.  They would get back to him in two to three days.  (Must be on the same sheet of music as MD Anderson.)  He then proceeded to call Mayo Clinic in Jacksonville, FL.  They wanted him in four days.

We were off!

Neither Doug nor I are known for our speedy packing.  However, in less than 20 hours we were motoring down the open road towards Florida.  I squirmed in the passenger seat going over a list in my head.  Cats have a sitter-check.  Refrigerator cleaned of food-check.  Cat outside had water and food-check.  Underwear in suitcase-oh no!  I would have to check that one when we stopped.

Jacksonville had other benefits than just Mayo Clinic.  Doug's mother lives there.  We have a warm bed to sleep in, food magically appears on the table, and we are pampered and spoiled in all manner of ways.

Our son, Robby, also goes to college there.  I can finally meet my new grandcats. I can also check out the girlfriend.  Some thing every mother wants to do.  I'm surprised I haven't made a secret trip there already to try out my PI skills.

Less than twenty-four hours after arriving in Jacksonville Robby had us to his apartment for a home made dinner of spaghetti and chocolate eclair dessert.  I found I loved my sleek beautiful grandcats and even approved of the girlfriend.

Now for a good night's sleep and a full day at Mayo Clinic.  We were confident good news awaited us in the morning.


Pr. 15.30-Smiling faces make you happy, and good news makes you feel better.