“It’s Been an Unusual Month”

As my eyes reluctantly view the keyboard, maybe I will wake up from this nightmare before I actually begin to type. Nope, that didn’t work. Every time I tell myself this can’t be happening, I realize it has. What is a person to do? Yes, others have worse stories, much worse, but for right now, at this moment in time, this is mine. It all started out on such a positive note. The date was July 21st and I had just finished typing Blog #20. I was full of hope and the promise of a health scare averted. The CT-scan indicated no cancer and my neck issues, at least for the moment, were subsiding and I shared that good news with my readers.  Diane was in Grayslake with Ryan, Margaret and 2 1/2 year-old dynamo Dan.  I was to join them the next day and from there Diane and I would proceed on to Ohio to visit Gordon III, Lisa, soon to be nine-years old Ava and four-year old Kent.  I felt fine and went to bed without a worry in the world not knowing that 24 hours later, my world would be turned upside down and with it, those of my loved ones. 

Thursday the 22nd saw me on Amtrak to Chicago and from there a Metra to Grayslake, IL. Ryan and Diane picked me up at the Prairie Crossing stop and then it was off to lunch where I consumed an entire cheeseburger which is unusually robust dining for me.  Dan was picked up from daycare and after his parents put him to bed that night, it was time for wine, pizza, and ice tea.  I was sound asleep at 10 p.m. and that was to be the end of my life as I had come to live it for 75 plus years.  At 1 a.m. I went to the bathroom and on the way back to bed tripped. We didn’t know it, but that was a sign of impending peril–oxygen deprivation. I began to sweat and then the ever-vigilant nurse Diane said, “Gord, you have a temp and are coughing up lots of phlegm. Are you OK?” Clearly, I was not.

At daybreak, Ryan arranged for an appointment at Northwestern Medicine Urgent Care near his home and the senior Taylors began a nine-day voyage into the world of high stakes pneumonia. The staff at urgent care administered an X-ray which revealed pneumonia in the right lung, lower lobe.  Immediately, we were sent to Northwestern Medicine Lake Forest Hospital where in the in-take room, they discovered my oxygen level was not only low, but dangerously low.  I assume this might explain my “tripping” episode of the night before. The staff raced me 95 miles per hour in a wheelchair to a triage room. I didn’t think I was having any trouble breathing but when this happens, sometimes people don’t know they are oxygen deprived, and I clearly was.  Next stop was a “step down” room which is one level below intensive care.  I glanced over at Diane and inquired, “Are you alright?” Her eyes reflected the anguish she was feeling. She was not and apparently neither was I. Soon my clothes came off and a less than sporty gown became my attire for the next nine days.  Oxygen was flowing once I got to my room and high-powered antibiotics via IV to combat the pneumonia were administered.  I had no idea how serious all this was and in my mind was thinking “Hope this clears up today or tomorrow so we can head out to Ohio.”  Many unpleasant surprises were in store in the days ahead.

Things were about to get interesting. I spent Friday the 23^rd to Sunday the 25th lying in bed with “hook-ups” for oxygen, antibiotics, and hydrating solutions. I looked very scary and felt the same, sort of like that person “in the end stages” if you need a visual. The effects of all this in some respects are cumulative and sort of sneak up on you. Going to the bathroom became something akin to planning the D-Day invasion–unhook, detach, tiny steps, and then pleading by me to be left alone by nurses while the reluctant patient does what people do in the bathroom. There is some dark humor here. I used “dark humor” 11 years ago never expecting I would have cause to ever use it again but now both Diane and I do in spades.

Nurse to Gordy: “I will stand outside the door. Tell me when you are finished.”

Gordy: “Please leave the room as I will be standing here until next week unless I have privacy.”

Nurse: “My instructions are to remain here until you are done.” 

Gordy: “Then I will just sit up in bed until I involuntarily pee my pants.” 

Then I heard small steps on the floor as nurse exits the room.  

Good news, Northwestern has a terrific kitchen and patients can order anything off the menu. I did. It was like being at a fine restaurant–chicken, hamburgers, fries, ice cream, chef salad, and so much more.  Just call the kitchen and 45 minutes later your epicurean delights arrive. Unfortunately, one’s appetite often takes a nosedive when all this other activity is taking place and I was one of those people-a bite of this, a sip of that and I would be done.  Nurses and hospitalists come and go and for a day or two things seem to be on track. But that is soon to end.

Gordy Taylor has suffered from severe restless legs syndrome (RLS) for the past 30 years. There is no pain involved, but I have the need to stretch my legs to get comfort and the phenomenon can go on for hours unless I find a way to get relief. For years, my neurologist tried everything to no avail until he went to a conference and they touted a new treatment that seemed to work—the lowest doses possible of methadone and Lyrica. STOP! I know how crazy that sounds but it is the ONLY thing that works. Without it, I can be up all night stretching my legs, night after night after night, so it is what I do.  Unfortunately, the folks at Northwestern in Lake Forest, who have more important problems to deal with, are pretty much unfamiliar with all this and decide I do not need my daily regimen of these two dopamine prescriptions.  They are wrong, very wrong. By Sunday night I am in great distress and find myself lying there from 8 p.m. to 4 a.m. stretching and then repeating the process all night long. I’m miserable but my predicament gets much worse. The IV antibiotics caused a horrible rash on my back and groin and within a couple of days those areas looked like raw hamburger. This is more than you need to know, but it gives you an overview of the multiple challenges facing the patient/medical dynamic.  For three nights it was excruciating:  stretching, itching, scratching, no comfortable position. I was going insane. Plus, and another touch of dark humor here:  I was given a lotion to help alleviate the scratching so I applied it generously to my back and let’s just say “private area.”  NOT a good idea.  Remember the Jerry Lee Lewis hit from the 50s “Great Balls of Fire”?  I shall say no more. 

Good Lord, what else can happen–burning body, return of RLS, oxygen, IV antibiotics/saline solution hookup and oh, of course, I have pneumonia. We would soon find out. Because I mentioned the episode of base of tongue cancer, (35 blasts of radiation to the neck area and 4 concurrent chemo infusions) the hospitalist team decided I needed a swallow visual test to be administered by a speech pathologist.  Horror awaited the Taylors. When I eat, I take a bite of food and then need a sip of something, anything–water, ice tea, lemonade, diet coke, wine in order to get what I’m eating to go down. I pretty much have this figured out, but it is not unusual for me to have a mild gagging reaction though ultimately, I am able to swallow.  The test was administered and the pathologist revealed to the medical staff, “This patient has parts of what he swallows going into his lungs and not his stomach. I recommend he never eat or drink anything by mouth for the rest of his life.”  Diane and I look at each other and the words just flow from our lips, “You have got to be s—-ing me!” Diagnosis and get this:  Gordon Arthur Taylor Jr. has silent aspiration bacterial pneumonia. Food is entering his right lung without his knowledge, thus and eventually causing his current condition. If he continues to eat and drink through his mouth, it is not a matter of IF he gets pneumonia again but rather WHEN.  The next time it may be fatal.  The hospitalist team recommended a Percutaneous Endoscopic Gastronomy (PEG) or feeding tube.  NO NO NO NO! I had one of these in 2010 for eight months while receiving radiation when I was unable to eat, drink, or talk.  And now, they’re telling me I need PEG again!  This time for every day for the rest of my life. This simply can’t be happening. The Taylors are inconsolable, dumbfounded, and heartbroken. 

I can’t live this way and say NO to PEG. “Hell, I’ve had 40,000 meals since 2010 and while I have a little trouble eating, I’m still here.” The hospitalist replied, “Yes, you are but when you get this again you will most likely be intubated, and you best get your affairs in order.”  He then informed me that Northwestern could no longer feed me through the mouth due to liability issues though I would remain there until my pneumonia cleared up.  I was admitted with aspiration pneumonia and their goal is to get rid of it.  The “Mexican Standoff” begins with me saying no PEG and Northwestern saying no food.  My last meal was tomato soup and a coke on Monday, July 26^th.  Really, after all the incredible meals I’ve had in Diane’s kitchen and restaurants, it is to end that way?  Unbelievable.

Tuesday the 27th is a very long day. Our hospitalist (an extremely competent young man) sat with us after we had made some calls to other doctor friends in our universe and both Diane and he told me it was my decision whether or not to get PEG.  I sat there for a long moment before saying, “That’s not correct. I really don’t have any choice. This is about science so let’s get it done.”  The point here is that with PEG, my chances of getting this particularly virulent type of pneumonia will be diminished greatly and my chances of living longer will be increased.  How all this will affect our lives is to be determined; however, I can assure you, it will not be fun.

On Wednesday, July 28th I have successful surgery. PEG is back in our lives.  The Mexican standoff ends.  Diane leaves that night. Her 20-minute ride back to Ryan’s seems like three days to her. She feels dejected as does her husband and our three kids. It has been a very long day but the night will be even longer–restless legs, hamburger back, multiple hookups, PEG insertion soreness, and don’t forget the Jerry Lee Lewis affliction. I thought the night would never end.

Thursday the 29th arrives. I have had no food since Monday, and today they hook up PEG which I will apparently be using for eternity. The rash caused by the antibiotics is subsiding, we have agreed to a methadone/Lyrica regimen, and I am recovering and needing less oxygen.  I got to wash my hair in the sink and am allowed to walk, untethered to the bathroom.  EUREKA.  I sit up in a reclining chair and on Friday afternoon the 30th Gordon III surprises me from Ohio. We actually take a little walk around our floor.  That night I feel the best I have as I know Ryan and Gordon are having fun “catching up” and Diane is with young Dan and his thoughtful and supportive Mom, Margaret.  Rumors are flying.  Is Gordy Taylor getting out on Saturday the 31st?  He is and he did.  The senior Taylors convalesce with the Grayslake Taylors until Wednesday, August 4^th, when Diane drives her patient back to Macomb. It has been an extraordinary thirteen days which promise to be a precursor to more health adventures in the days ahead. 

In the Taylor household when our kids were growing up, we would post a “quote of the week” on the refrigerator.  Some were funny; some were outrageous; and some were thought-provoking.  Diane gets the Taylor “quote of the week” for August 13^th.  “Gord, it’s been an unusual month.”