July-December 2013

We haven’t posted in a while so we’ll send a few updates covering several months at a time to catch up.

JULY 2013

ANOTHER ROUND OF TESTS

by Susan

My dad, Gene, came to Boston to stay with me during the two-week  chemo off-period for another round of examinations and tests by his Oncology team. The CT scan was negative (which is a positive!) as were all of the blood tests and other tests.  ALL SYSTEMS GO!

We spent Independence Day in the picturesque New England coastal village of Manchester-by-the-Sea,  north of l Boston.  We had good weather  and went to Manchester’s annual Independence Day parade.   Gene was wishing he had brought his flintlock so he could march with them.

4th of July Parade

Later we went to a spectacular concert and fireworks show at Singing Beach.  Singing Beach, said to be one of Boston’s nicest beaches, is a beautiful white sandy cove about 1/2 miles long with a traditional  1920’s  era bath house. The beach is great for open-water swimming when the water in late summer finally warms to above  60°.   The beach is about 3/4  miles from our home and Gene was able to walked to and from it almost  every day.

Since the water was so cold at the beach (58°) dad worked out at the Manchester Athletic Club (MAC). They have a great pool and hot tub. We both swam and, four months after the surgery, Gene was able to swim for half an hour. He is well on the way to recovery and looking forward to a healthy future.

Gene swimming at Manchester Athletic Club

Back in Orlando

by Terry

Gene is back with me in Orlando. He looks great after spending two weeks with Susan. Gene began working out as soon as he got back from Boston and swam with Ron and Digger the very same day. After the swim, Gene said, “I don’t look as good as I used to, but at least I’m still here to look at.” He’s been struggling with the chemotherapy side effects; nausea, abdominal pain, tiredness and loss of appetite, but he keeps swimming and walking to try to purge the chemicals from his system. He’s in a lot of pain but he keeps looking forward to the goal.  The good news is that he’s still here to complain about the pain and one has to be really strong mentally, physically and spiritually to go through chemo pain.  We’re looking forward to October when the chemo is over.

 

Gene after swim with Ron and Digger

 

 AUGUST 2013

Still On The Chemo-Coaster

by Terry

It’s a long way down

It seems that the ride is tougher with each chemo treatment… this is something Gene never gets used to no matter how good he is at it.  The highs aren’t as high and the lows are even lower. Whew, what a ride, we got through the August session.  Gene’s happy to be back with the Lucky’s Lake Swimmers. Only one more series of chemo infusion in October!  His overall health and attitude seems good.

Are you sure you don’t want to swim in a pool?

 

 

 SEPTEMBER 2013

The Clean-Up Crew

by Terry

What a great work-party

What a great group of friends Gene and I have. We haven’t been able to do much yard maintenance for 9 months now. On Saturday about 40 friends, some from our church (Southwest Church), some from the Lake Cane swimming group, and some neighbors came over and did a makeover on our lawn and yard. They pulled weeds, trimmed trees, cleaned gutters, built planters, removed trees, cleaned up the lakefront, and took 4 truckloads of yard waste to the dump.  To top things off, some of the volunteers made smoothies and served  lunch to all the landscape architects!  All this transpired in the span of about 2 1/2 hours! Woo Hoo!

Sammie gets up in the world. Best gutter restoration specialist that I know!

 

Cutting boards for the above ground planter

 

Tree wrestling

 How many workers to remove a dead tree? Three, two to pull and one to watch.

Getting organized

 

Terry gets into it

 

Hugh holds ladder, Barb serves smoothies

 

Paint crew at work

 

Weeding the fence, oh Mi!

 

Busy restoring planter

 

OCTOBER 2013

The Chemo Is Over!

by Susan

My final infusion at MGH

Gene’s back in Boston for his final chemo infusion.  For scheduling purposes, Gene deviated form his routine of getting the infusion in Orlando and had the final one administered at Mass General Hospital.  The good part was that the  infusion room at MGH is on an upper floor with a spectacular view of the city of Boston and the Charles River.

Sunset over Charles River from MGH Infusion Center.

 

Not so good was that took nearly 8 hours since Gene was not yet in the system for chemotherapy at MGH and they had to test genes blood counts, wait for results, and then concoct and create his chemo cocktail.   Like a kid, Dad kept asking , “Are we there yet?”   That was a grand finale with great news to follow!

Gene’s Official Doctor’s Report

The final infusion of chemotherapy was followed by another series of examinations, tests and scans.  Not only were the results good but the Oncology team pronounced the sweetest words to our ears, “CANCER FREE”!  Thank God!   After a few days recouping from the chemo (party), Dad and I did long walks and he began swimming again at MAC. He’s finally making way on his recovery from the Whipple surgery.

 

 

Gene asks,”Please celebrate my good fortune with prayers thanking God for my miraculous recovery. Faith and miracles go hand in hand.”.

 

 

November 2013

 Back in Orlando

by Terry

Gene is thrilled to be back in Orlando and it’s exciting to see him to swimming Lake Cane every day in November.  It’s been a good month and we should be able to start cycling in a few weeks! Whoopee!

Cycling in Munich in 2012

 

The 30 mile West Orange Trail

West Orange Trail runs 30 miles through rural scenic beauty. We make a morning of it by cycling for about twenty miles, then turn around and go back. We’ll normally have a picnic,  play a game or read. I can’t wait to do it again.

December 2013

Two Steps Forward, One Step Back

by Terry

In mid December Gene began having severe abdominal pain (ouch) and one always thinks the worst. The pain was so severe that I took him to the Dr. Phillip’s Hospital emergency room. They did a CT-Scan but found nothing and essentially said, “take 2 aspirin and call me in the morning”. With that, Gene decided to call his team in Boston and they told him to see a local surgeon for diagnosis. They were convinced it was not a recurrence of the cancer but something else, like a severe muscle tear or a hernia.

 

This says it all

We went to see a local surgeon. The surgeon discovered something when he reviewed that same CT-Scan. There were two blips in the scan that were either a hernia or granuloma. A granuloma is a cyst-like growth that may be likened to a pearl in an oyster. The grain of sand (granule) inside of the oyster shell causes and irritation and the oyster, in it’s defense, starts building tissue around the grain of sand such that it eventually develops into a pearl (granuloma).

 

CT-Scan frame showing Gene’s granuloma

In Gene’s case, it turned out to be not grains of sand but two undissolved sutures deep in his abdomen. You can see a little white spot at the tip of the arrow in the photo above. The surgeon removed them by surgery in an outpatient surgical center and Gene had immediate relief. A week later the adhesive sutures on the outside fell off and he started swimming again. Over the next two weeks he built up to doing the full 1K Lucky’s Lake Swim.

 

Happy Days Are Here Again!

I RE-ENTERED THE FOOD CHAIN

ENTER THE FOOD CHAIN

On June 15, I swam my first full lap since my surgery. I made it across the lake in 35 minutes. Then, yesterday I did it again in 32 minutes.

Today the Chemo bomb hit me.I did only 10 lengths in the lap-pool. Only 11 more chemo sessions.

NOT MY FAVORITE CHAIR

This is not the most pleasant way to spend the morning. I check in, go to the chair and a phlebotomist ( also known as VAMPIRE ) sticks me in the arm and usually misses the vein on the first three try’s. Then, another VAMPIRE try’s and is usually successful. I think the first vampire hasn’t earned her fangs yet. A blood sample is drawn and tested to verify I am in good enough condition to receive the  gemcitabine( poison). It takes about a half an hour to evaluate the blood, then they start a pre-poison intervienous drip of a steroid to reduce the reaction to the poison. That takes another half hour or so. Finally they start the drip. About an hour later it is over, the vampire removes her fangs and I’m free to go.

About 24 hours later, I get hit with the reaction from the chemo, severe abdominal cramps and extreme fatigue. This knocks me on my back for a couple of days. Then I recover and get ready to do it again.

I WANT TO THANK ALL WHO SO GENEROUSLY GAVE TO MY CANCER FUND. THANKS TO YOUR GENEROSITY I WILL BE ABLE TO CONTINUE WITH THE RESEARCH FOR THE NEXT FIVE YEARS. MY HEARTFELT THANKS.

I ESPECIALLY WANT TO THANK ALL THOSE WHO PRAYED FOR ME AND SHOWED SO MUCH LOVE AND CARING. I AM TRULY HUMBLED!

BE SURE TO CLICK THE SEVEN MIRACLES TAB AT THE TOP OF THE PAGE.

Ridin’ Waves

Gotta Catch This

Chemo therapy is like surfing great waves.  One moment you are flying high, full of excitement

Ridin’ High

and then…

CRASH AND BURN

WIPEOUT

Then you struggle for days to get back up on the crest.

I typically lose 3 pounds in the 2 or 3 days following the chemo therapy injection and it normally takes me the rest of the week to gain it back.  I am fortunate that I have no nausea and I have my hair.

Unfortunately, I get severe stomach cramps and extreme fatigue.  On the brighter side, I only have 13 more sessions to go, but

WRESTLING A GATOR

I’d rather be wrestling alligators.

(a note from Terry)

Only 13 more chemo therapy sessions to go, hallelujah!

The first five sessions were not that horrible unless one enjoys having steroids and gemcetabine jammed into their bloodstream via an intravenous feeding tube with a Nazi nurse administering the formula at the other end.  Then to top it off, one gets to be curled up in a ball with abdominal cramps for two consecutive days.

Actually, the nurses are quite personable and the steroids apparently allow one’s body to accept the cancer fighting chemicals without too much resistance or an immediate drug reaction. Gene and I have made these chemo-sessions into kind of a “date” in that I pack a picnic lunch for Gene, we share intimate conversations (as we can’t talk very loudly in front of the other 14 patients) and I read books to him.  As I stated in a March blog, we read “No Easy Day” by Mark Owen about the capture of  Osama Bin Laden as told by a Navy Seal.   Some of the e-books that we have read and enjoyed are;  “A Convenient Solution” by Trevor Whitton ,  (a 13^th century murder mystery), “The Poor Rich  Man” by Mary Rhienhart (a well written story about a humble yet very powerful man in the early 20^th century.

We have just completed and given a ‘two-thumbs-up’ to a murder mystery written by Vincent M. Lutterbie;  “After The Facts, An After Cofman Mystery”.  It was an entertaining read about a rookie private investigator and his first case.  One of my favorite and most memorable lines from the story was;  “He was so straight arrow that he made me quiver.”  This is funny if you get the point.

At this particular time of our lives, I have to agree with Groucho Marx who coyly stated;  “Outside of a dog, a book is man’s best friend; inside of a dog, it’s too dark to read.”

When Gene is riding the “crest”, he manages to transact some business.  I am SO looking forward to transforming our dining room into an RF testing station

Spectrum Analyzer

so that we can actually work from home.  I hope we get the order.

Most of my time has been spent at home in the kitchen, in the garden and in front of my computer.  I have made some new friends:

Terry’s Tamatas

The Vitamix is also my friend as I use the this blender at least twice day and the Smoothie of the Month is:

“Cocopiñuta”

• 4.5 oz             Coconut Milk (about 1/3 can)              217 calories
• 1 scoop          Natural 100% Whey Protein                 100 calories
• ½ each          Banana (frozen)                                         50 calories
• ½ cup           Pineapple (frozen)                                      50 calories
• 6 each            Coconut Water Ice Cubes                         20 calories
• 1 tsp               Coconut Nectar                                           20 calories

                                   Total delicious calories:                          457

And finally, the Word of the day:

“I can do all things through Christ who strengthens me.”   Philippians 4:13

GENO’S BACK!

I’m back in Orlando. I’m having my chemo done in Orlando and I’ll be here until July. I hope to post a real update to this account very soon.

Geno

Surgery Recovery Week 6: Hope, Growth, and Healing

Gene is now back home in Orlando.

Six weeks ago just before Gene went into surgery, I planted starter seeds for my vegetable garden.    Little did I realize at the time these seedlings would be reminders of hope, growth, and healing.  I tended to both Gene and the seeds with lots of love, care, and nourishment.  The seeds were just beginning to sprout when Gene came home from the hospital.  Two weeks later, as Gene’s sutures were removed and his digestive system started to sort out its new configuration, the seedlings were green, healthy, leafy 4″ tall plants.

A week before Gene returned home to Orlando, both he and the seedlings were “hardened off” in preparation to going out into the world on their own.  Finally, after Gene’s last drainage tube was removed, I stopped prodding him to eat and drink, and no longer made his menus but insisted he decide what and when he would eat.  By the same token, the seedlings were taken from their cozy indoor location and moved to a cooler location to prepare for their new life outside  exposed to the wind and cold.

Gene is now at his home and my little seedlings are planted outside in their new home, each adjusting to the new elements and striving to survive independently.  As the winds buffet my seedlings, they will get stronger and grow into healthy plants.  As Gene starts to swim and take on his regular activities in Orlando, he will be building strength for the next steps of his recovery.

Chemotherapy begins on Monday.  Gene’s doctors report that most patients find this the least difficult of treatments.  We hope that Gene breezes through this and will be swimming with me again on Singing Beach when he returns in July.  Then we’ll all sit outside and appreciate the garden and the miracles of life together.

Susan

 

Surgery Update Day 11: Lymph Nodes Negative and Margins Clear!!!

Another update from Terry:

The news keeps getting better.  Gene, Susan and I sloshed our way through eight inches of new snow to the train bound for Boston’s North Station en route to  Massachusetts General Hospital this morning.  Gene had an appointment with his surgeon to have him look at the redness in the area of his abdomen around his drainage tube (sorry about the graphics).  

Dr. F. smiled and probed Gene’s abdomen in a few places and then told his colleague to remove the staples from the incision.  As all 18 staples were removed, Dr. F.said he was pleased with the healing process and called Gene a ‘rock-star’.  He was also a bit surprised to learn that Gene had stopped taking his pain medication because it has been only eleven days since the surgery.  

He said that the pathology report was complete and then, as we all held our breath, said;  “All 26 lymph nodes  have come back negative and margins are clean.”   We cried grateful tears and hugged Gene.

To echo the words of Dr. F.;”Thank God!”  This is another Passover/Easter that I will never forget!

Surgery Recovery Day 8: Update from Terry

We are a little behind on posts.  Here is one from Gene’s wife, Terry, for Day 8.

It has been eight days since Gene submitted his life into the hands of his surgeon under God’s will for Whipple Surgery for the treatment of  pancreatic cancer.  It is wonderful, miraculous and amazing for me to see him eating, drinking, walking, laughing and loving.  Yes he is weak sometimes, and pale sometimes, cantankerous sometimes, and a little slower physically and a bit skinny, but his gastric system is functioning, hallelujah!

Gene is on a diet of organic foods which are high in protein, low in fiber and low in sugar.  I’m so grateful that Susan (his daughter) is into nutrition and we are only giving him ‘pure foods’.  His digestive system is functioning without the aid of ‘manufactured enzymes in pill form’, another hallelujah!  I’m in charge of the medicine which I don’t like to administer at midnight and three-o’clock in the morning.  We spend our days by taking short walks in 30° weather, moving and breathing as much as possible and inventing new organic recipes like organic chocolate ice cream with hot organic peanut butter sauce and cream of wheat with butter and garlic.

In addition to the meals (6 small ones per day), we find time to pray, read, play Words With Friends,  Dominoes, use FaceTime with family/friends, answer email and take a nap or two. Currently I’m reading “No Easy Day”, (a recent book about the life of a Navy SEAL} by Mark Owen, orally to Gene.  Gene was a lifeguard in Wildwood, NJ before joining the United States Marine Corps in 1950.   He applied for Underwater Demolition Team training, (UDT was  the forerunner of the SEALS) but was not considered because he was deemed to be a short-timer in his “indefinite enlistment”.

During this recovery and rest period Gene is restricted to only a few phone calls a day with duration of three minutes or less.  He is so fortunate to have such loving care from Susan, Jim, family, friends and myself.  We are at 89% of the fundraising goal! Thank you, thank you, thank you.

Terry

Surgery Recovery Day 6: Not your Average Patient

1934 Newspaper clipping announcing “The Water Baby” sculpture by Beatrice Fenton, for which Gene modeled.

Statistically speaking, Gene is not average and never has been.  At 3 years old he was modeling for sculptures that are now in museums.  (See photo left.)   In his 70’s he completed his first triathlon.  And how many 82 year olds do you know who swim 1-K every morning in open water?

So when Gene’s surgeon said that the median or average post-Whipple Procedure hospital stay was 7 days, I should have known better.  But I figured that Dad, being older than most Whipple patients, would stay at least the 7 days, and maybe even the 10-14 that is common with these surgeries.  I even looked forward to the idea of getting a 7 day break before returning to caretaker mode.

I am happy to admit that I was so wrong!  Gene was discharged from the hospital on day 4!  Yes, you are reading right…  Gene came home Tuesday, less than 96 hours after having major abdominal surgery on Friday.

Yesterday, Wednesday, was Day 5, Gene’s first full day at my home without the care of nurses.  He did well, especially since his guest room is on the third floor of our little seaside town-home.   Like in the hospital, he is interrupted every couple hours and encouraged to take fluids, food, pain killers, and walks, so none of us are getting much rest.  But all systems are “go” and Genes digestive system is awake and learning how to accommodate with fewer parts.  His pain fluctuates between minimal and moderate, which can be expected with this type of surgery and increased physical activity.

For those of you interested in statistics, and hope, read The Median Isn’t the Message, by Stephen Jay Gould.

Click to access Stephen%20Jay%20Gould.pdf

Surgery Recovery: Day 1

Gene rested this morning after having a bit of pain overnight which is now being controlled.   His surgeon asked us to limit his calls and visitors so Gene can rest and recover from the shock his body has been through.   Doing nothing is not something Gene does well…  With all the pain medication he is on, his mind still won’t slow down.  At less than 24 hours since his surgery, Gene was sitting up in his hospital room and joking as Mike, Terry and I arrived today for a brief visit.  We knew he was feeling better when he asked for is I Pad.

Thanks for your thoughts and prayers, and please keep them coming,

Susan

Surgery Update: Gene is in recovery.

Gene is out of surgery and in recovery. All went well. Heart is strong. Tumor was removed. Will know pathology after 8-10 days.

Please keep the prayers coming.
Susan

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