John’s Story

Site created on May 16, 2020

Greetings from Arizona, my dear friends       
          I wrote the first draft of my CaringBridge statement which gave some details of my recent serious cancer diagnosis of Acute Myeloid Leukemia (AML). It sounded so appallingly bleak and dreary that I decided to try a lighter touch.


        As I look back on my life I realize that I have been not only incredibly blessed but also lucky. Cats have nothing on me as over the years I have come close to dying or being seriously injured so many times I may have used up eight of my nine lives.

         Ironically, while killing time (bad choice of words?) amid the Covid-19 horror, I was starting to send my grandkids and other family members short vignettes about my childhood called “The Bad Grandpa Stories.” A part of this fun endeavor was to write down many wacky, weird, worrisome, and wonderful events. It was after this list was compiled that I realized what a truly rich and full life I have led right up to the present moment.

         Having this in the back of my mind when I was given my diagnosis, I took a deep breath and said to myself, “Well, it looks like my amazing journey may be coming to an end.” Fortunately, I don’t have much left on my Bucket List, so I am not going to go bananas frantically trying to cram a bunch of experiences into my already jam-packed warehouse of good memories. Patty and I have been preparing for the day that we would be recycled back into the Great Whee of Eternal Life, so a good deal of groundwork has been done.

         I have started treatment which, if it takes hold, will temporarily put me into remission. It is impossible to say what may happen next, how long it will last, and so forth. That is why we are sending you this CaringBridge link to keep you posted. I have one serious request: please do not feel compelled to reply to any or all the updates. I will not feel offended. I will not feel like you are treating me like Spam. Believe me, I really do understand.

          I also want to say to those of you who are already aware of my condition I am deeply touched by your support, concern, compassion and love. And thank you so much to those of you who are helping in so many ways, with food, transportation, and getting paper towels for us in these tough times. 
  
          All of you know how much I have enjoyed riding a bike all these years, so I want to end with two timely quotes I found on the internet:

It’s only a hill, get over it.
Tim Badger

My ultimate fear is that when I die my wife sells my bikes for what I told her I paid for them.
Sean Power
 
Be well, stay safe,
Love John

Newest Update

Journal entry by Patty Hilpert

As most of you may know, my procedure for the replacement of my aortic heart valve went well, thanks to the terrific quality of my MGH team, but unfortunately a few days after I got home, I started having problems. Apparently, the blood thinners for the procedure may have caused a GI bleed and on September 29th I was taken to Emerson Hospital. I didn’t get out until Oct. 5th.

Here is a little fantasy I have of making a documentary drama film of this whole experience.  It is a rough sketch of some of the scenes and characters from this imaginary video.

Scene 1 The camera captures the ambulance pulling away from our house hauling the bewildered body of John to nearby Emerson hospital with Patty following in our car.

Scene 2 After a visit to the familiar Emergency Room, John is eventually wheeled into a very small double room where he realizes that the commode of his roommate Dave is only six inches beyond the curtain to the left.

Scene 3 A cart containing blood pressure equipment comes crashing into the wall at the foot of John’s bed followed by another cart holding a computer that crashes into the first cart.  A very loud voice (belonging to the nurse who pushed the carts in) soon announces the arrival of “Vicky” aka the Tasmanian Devil. Over the course of the next three days Vicky displays an amazing repertoire of ineptitude including three botched attempts to put an IV needle in John’s arm, crimping the line delivering a blood transfusion to John thus causing air bubbles to form, sitting on the end of John’s bed thus crushing his toes, and pulling away the cart which is has a line attached to the oxygen monitor on the end of John’s finger.

Scene 4 John’s bed is alarmed so that he can never leave it without setting off a loud noise. This is because he is deemed to be a “fall risk.”  This presents a real problem to John who often has to leap out of bed to go to the bathroom because the GI bleed was causing persistent diarrhea.  On one occasion John does not get to the toilet in time which creates an unfortunate mess. Looking at this disaster, John flashes back to memories of hysterically funny “dirty book titles” from his youth.  Titles such as “Eight Paces to the Outhouse” by Willy Makeit; “Spots on the Wall” by Hu Flung Dung; and “Yellow River” by I.P. Daley.

Cast of Doctors  

The film includes four different hospitalists (doctors who oversee the care of the patients on a hospital floor). It is the United Nation of doctors. One is Asian, one African, one British-Indian, and the fourth a never seen phantom. John’s doctor friends, Mark Connaughton and Roy Farrell show up in his room or via telephone at critical times to speak with the various hospitalists to helping to keep everyone focused on getting things done. 

Cast of Nurses and Assistants

There is a merry-go-round of nurses and assistants who rotate taking care of John over the six days he is in the hospital.  They are, by and large, very helpful and concerned.  Noteworthy in this cast is Nana (a wonderful gay black guy who loves fashion); Conor (from nearby Leominster who we talk out of flying to Marseilles, France in December so he could be on the beach); Cassie (a petite Asian dynamo) who helped me frantically prepare for an early morning colonoscopy); Pius (a very intelligent  Kenyan whose devoutly Catholic parents named him after a pope because “they had high hopes for him”); and Mo (a Haitian woman who loves to laugh and spread the love).

Various high- and low-light scenes:

John is upgraded Marriott-style to a private room (at an extra charge).

John is moved from his single to a different room in a different building around midnight of his last night to make room for a Covid patient. (The hospital is over capacity with Covid patients, by the way. Again.)

Due to the strain on whole system, certain Snafus occurred such as having the evening’s sleeping pill delivered at 6:00 a.m. (Thanks to the Phantom Hospitalist).

Flowers arrive to John’s room from someone neither he nor Patty knew.  It turns out the flowers were from the CEO of the Emerson Hospital Corporation sent to John because he is an Emerson Hospital Patron. Unfortunately John has such a frustrating and disappointing stay he vows never to return to this hospital again.

Another low-light was the “clear diet” John was put on several times to prepare for an endoscopy and a colonoscopy. Clear, like water, and broth and yellow Jell-O.

 

Final scene of the movie.  Patty, who has been a real trooper going back in forth to help out, drives John home Wednesday noon. Even though they are both exhausted, they decide to make a yummy teriyaki pork loin for dinner.  After the loin is taken from the freezer and marinated by Patty, John puts it in a frying pan with really hot oil to sear the outside.  Smoke erupts from the pan filling the kitchen. Something is wrong.  But what?  After the loin is pulled from the oven 15 minutes later, John begins to slice it.  To his profound amazement he encounters the charred remains of the final layer of saran wrap which encased the loin that Patty and John never saw during the preparation. Final image:  the camera zooms in for a close up of a very well charred, teriyaki marinated sheet of Saran wrap on a dinner platter and then the camera focuses on John who is shaking his head in disbelief that he has continued on a clear diet!

Epilogue

I am profoundly happy to be home.  I feel that some underlying medical issues need to be resolved. I have scheduled follow-up appointments with key doctors and will resume my chemo which was interrupted by this incident. I am deeply grateful for all the support I have gotten from my family and friends. Patty and I are not making any travel plans just yet but our thoughts about getting back to our desert home sometime in the future after surviving this GI bleed are sanguine. Sanguine. Get it?

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