Table Setting for One

It seemed like months from July 23 until August 4 when we arrived back in Macomb. Upon our return, we pretty much just collapsed–no unpacking or anything else for that matter, we were just glad to get home. Doctors encouraged me to take short walks so for the first week that is precisely what I did, just around the neighborhood but that was enough for me.  I slipped into the regimen that I’m told will be my “new normal” for the foreseeable future. Give or take a few minutes, the daily schedule is the following:

• 6 a.m.—30 cc of water in PEG via the large syringe, crush a pill of Levothyroxine for my damaged thyroid from radiation in 2010, followed by 30 cc of water in PEG
• 6:30 a.m.—30 cc of water, 2 ½ cartons of Jevity 1.2 in PEG, followed by 30 cc of water (25 to 30 minutes) 
• 9 a.m.—200 cc of water in PEG
• 10 a.m.—30 cc of water, crush a methadone pill for severe restless leg syndrome, followed by 30 cc of water in PEG
• Noon—30 cc of water, 2 ½ cartons of Jevity 1.2, 30 cc of water (25-30 minutes)
• 3 p.m.—200 cc of water in PEG
• 5 p.m.—30 cc of water, one dose liquid Lyrica in PEG, 30 cc of water 
• 6 p.m.—30 cc of water, 2 ½ cartons of Jevity 1.2 in PEG, followed by 30 cc of water (25 to 30 minutes) 
• 7 p.m.—30 cc of water, crush a methadone pill, followed by 30 cc of water
• 8 p.m.—200 cc of water in PEG

And that’s a wrap!  As Diane and I have said repeatedly to one another, “This is no way to live your life.” However, for now, I guess it is. Let me make an important point here—the main reason we are sharing our story. Do not read this and have your primary response be, “Oh poor Gordy and Diane, so sad what they are going through and this on top of his cancer in 2010 and then Diane’s TWO broken ankles in 2018.” Yes, those were times of rough sledding, but we came through on top and have so much for which to be thankful and that, dear friends, is the point of all this. Be grateful for each and every day you have on this earth. I was told by a wise philosopher (I think it was my dad), “You only go around once and then you spend the remainder of eternity on the other side of the grass so laugh, sing, dance, eat well, travel, embrace family, smile, act silly, and do what pleases you today because there are no guarantees for tomorrow.” 

If you have a bucket list, start crossing things off it now. Why wait for a tomorrow that might not ever arrive. Don’t be totally imprudent but buy the car, or boat, or dress, or vacation home. Take that dream trip. There’s an old adage on aging: “You’ll never be any younger than you are today, and you’ve never been this old before.” So get with IT!

We are thankful we were able to do some significant “travel” before all this happened. I can’t take cases of Jevity 1.2 to a foreign country and realistically carry it everywhere I go so will we travel? Of course, but our destinations will probably be restricted. We think there are plenty of wonderful excursions yet to be had. All we have to do is pack and gas up the car and bring along an ample supply of good old Jevity 1.2 and away we go. We seldom think about it until it’s too late, but as we age, our health only becomes important when we no longer have it so take care of yourselves and don’t put off until tomorrow what you want or can do today.  And that, ladies and gentlemen is my sermonette on living life to the fullest. 

As the days pass since our return to Macomb, there is a certain “sameness” developing. We are living Bill Murray’s Groundhog Day but it’s in black and white, not technicolor. It is hard to “get away” from my regimen and that makes doing anything outside of that a challenge.  I have seen three doctors since our return. All of them stress the importance of walking as a therapeutic and strengthening activity and that is fantastic news for a guy who enjoys that form of exercise. We anxiously awaited our doctor visits beginning with my pulmonologist. There was good news at hand. After a couple of tests to measure my oxygen level, breathing capacity, and a CT-scan, he was literally amazed at my rapid recovery.  Most people with aspirational pneumonia take several months to recover, and while I still had a small “pocket” to get rid of, I was way ahead.  I asked him, “Who should be my quarterback for all of this?” Without any hesitation he looked over at Diane and said, “Here’s your quarterback. She’s sitting right next to you.” 

It was on to the ear, nose, throat (ENT) doctor who originally treated me back in 2010.  He did the dreaded scope with a camera down my nose to the back of my tongue procedure and is basically our medical “quarterback” in terms of moving forward with my overall treatment. While things look positive, a PET scan on September 1^st has been scheduled to make sure there is no cancer lurking. Final stop was my primary care doctor here in Macomb and he is a highly-competent professional who is wise beyond his years and has been extremely helpful evaluating various aspects of my “health journey” the past couple of years.  He concurred with the advice of my other doctors and feels I am doing quite well. 

This leaves us with that famous “800-pound gorilla” by the name of PEG that won’t let me go! None of these three doctors have seen my records from Northwestern Lake Forest Hospital. The issue is what to do moving forward and everyone needs to see the records for themselves as to why Northwestern hospitalists recommended what they did. We are laypeople, but to the Taylors it would appear PEG was inserted as I needed nutrition immediately and food/liquid via traditional manner (mouth) was simply not an option. As for the future, Northwestern doctors assume there basically is no future without PEG, but others who have known me for years feel there might be other options but simply can’t make such a recommendation until they see all the records, specifically the swallow test, which I failed so dismally.  The ENT doctor has requested a follow-up swallow test to see if it has the same results as the previous one. 

For the Taylors, we are just glad to have these three appointments in the rear-view mirror. We went into them with much reluctance, fear, and hesitancy.  We were fearful that something would be discovered via breathing problems/pneumonia or PEG utilization and we would be moving backwards, not forwards. That simply is not the case. As I sit here typing, it is hard to verbalize our current situation.  I feel good, very good. I am walking as before with no shortness of breath and sleeping soundly.  My PEG adjustment has been seamless thus freeing Diane from that responsibility.  Do we get a little bored by the repetitiveness of every day much the same as the last one? Of course, so maybe I need to vary my daily walking route—problem solved, sort of. The future is still uncertain, but we came through base of tongue cancer, two simultaneous broken ankles, and now this, so we will find a way to figure it out.

Sometimes it is the little things in life that “get to us.”  Since we became empty- nesters 23 years ago, we have dined together as a couple, at least for the evening meal. We still do, BUT I sit on the couch restricted by PEG and the sameness of Jevity 1.2 via syringe.  What is Diane to do? She has ordered out, attempted to cook for one, done some frozen meals, and while she gets sustenance, it’s just not much fun for her to sit there eating real food while I sit hooked up with PEG.  Again, really can’t complain as we know lots of people who would be envious just to have their spouse alive; however, it is an unwanted change in our lives.

Another adjustment and question remain, is PEG permanent or is there hope for some sort of modification down the road? We shall see. The journey continues and the next stop for this health odyssey is a PET Scan September 1st.