Friday, October 29, 2021
It has been two weeks since the happy dance celebration with wonderful MRI results. Monday is November 1st, and I have been pondering what that will bring. Since the beginning of this journey on July 2nd, Diane and I have been touched, deeply touched, by the support we have received from so many people via personal visits, phone calls, texts, emails, cards, and letters. Your “being there” for us and the many prayers on our behalf have made “all this” bearable and even if the outcome had not been positive, we would have found strength and solace in all everyone has done for us. Thank you seems inadequate but it is the best we can do so let me reiterate, “Thank you, thank you, thank you” on behalf of the entire Taylor family.
I used the word “ponder” because that is about all I can do until the CT scan swallow test is conducted on Monday. I walk early in the morning with buddy, Sean, watch too much Dateline etc., have cleaned out numerous drawers and files, and answered as many queries as possible in order to keep my mind occupied. I am clueless as to what lies ahead. Let me be clear: I know I can swallow, that really isn’t the issue but rather when I do this simple activity, where does, what I put in my mouth go?
The Northwestern Hospital medical staff said food and liquids were getting into my right lung lower lobe and that caused my silent aspirational bacterial pneumonia. Obviously, we don’t want that to happen again but by the same token, if not absolutely necessary, can I ever get PEG removed and return to what we have come to call a “normal state of living.” If the swallow test indicates a chronic problem that cannot be reversed, then we will simply have to live with this intrusion in our lives and move on as best we can. If, however, I can remove PEG and eat and drink again with the odds being there will not be a serious recurrence of the dreaded pneumonia, am I willing to “roll the dice” and take a chance? I’m guessing that is the dilemma we are facing and hopefully on Monday we can get on the road to finding answers to that most serious of questions. Oh, there it is again, tick tock, tick tock.
Monday, November 1, 2021
Appointment over and we are back in Macomb. As I type this, I have a knot in my stomach—not bad news but not particularly good either. I’d give today a C-; I did not totally flunk the test. However, for now PEG remains. The speech pathologist administered the CT-scan swallowing video which took 15 minutes to complete. I sat down in something akin to a dentist’s chair and was asked to swallow a small amount of water with barium, then eat a little applesauce, and then a piece of peach. I was told to chew and then swallow and do whatever it took to “get it down.”
All of this was filmed and Diane and I were shown the results and everything was explained to us. It seems all this is tied into the silent aspiration pneumonia episode from July which was when it was determined I should no longer eat food and drink liquids in the conventional manner and PEG was inserted. For me, the problem is that when I swallow food and it goes down my throat through the esophagus. There is a flap (epiglottis) that opens and shuts to ensure food goes to the stomach. In my case, the muscle is not ensuring this happens and a very small amount of food is not going to my stomach but getting detoured to my right lung and thus causing bacterial pneumonia. The reason it is called “silent” is because I don’t even know it is taking place.
Why is this happening? Eleven years ago when I was treated for base of tongue cancer (squamous cell carcinoma), I wore a mask over my face and neck that was bolted to a table so that I couldn’t move while I received 35 blasts of radiation over 7 weeks. The radiation was a huge part of eradicating the cancer. No doubt, it saved my LIFE! But in so doing, it damaged the “good” tissue in my neck area. As we have come to learn, radiation is the gift that keeps on giving. This is not always such a good thing. According medical professionals, my age in tandem with the radiation has me where I am today.
I will next be scheduled with an outpatient speech pathologist who will prescribe and give me exercises to do twice a day that will strengthen the appropriate muscles. After a month, I will return for another swallow test. The speech pathologist today did not discount the possibility of this working and actually seemed hopeful that I might be able to get that muscle strengthened to the point where it would be possible for me to eat in the conventional manner. So, there is hope. She said the fact that I appear to be active and otherwise in good health work in my favor, so now we wait for the ENT doctor to make arrangements for all this to happen, probably in Burlington.
Why a C-, why a knot? Answer is pretty easy but sounds a bit self-pitying. We are both just plain tired of all this and want it to end. Since May, it has been one thing after another and now the fact that PEG will be with us for the foreseeable future just seems daunting. It is hard for others to visualize what it is like for us at dinner. We call it “situational fatigue.” For 95 days, I have sat on the couch three times a day “feeding” myself Jevity-1.2 product. Diane sits on the other couch eating salad, steak, chicken, Frosted Mini Wheats (at least it isn’t Fruity Pebbles), English muffins, fruit, cheese & crackers, frozen dinners, etc. It makes the eating experience a job and not a dining pleasure. We now eat to live and not live to eat. It sort of takes the joie de vivre out of our lives.
Then I look in the mirror and say, “Shut up, you ungrateful jerk. You don’t have cancer and certainly you can live with this if that’s what you need to do.” That is correct, but guess I was hoping for the whole enchilada and that is simply unrealistic at this point in time. Now it is on to the next step and will soldier forward with a positive attitude as that is the only way to proceed. Two weeks ago, we were potentially facing cancer and now we’re NOT!
Diane came across a Brene Brown quote that explains the main reason we embarked on this refocus of the blog which is to address what we have been experiencing
One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.
We hope the blog does just that.
Gordy and the Fourth Quarter 
I keep you and Diane tucked tenderly in my heart and wish healing PT for you.
great blog Gordy hope is will bring positive results…
Gordy, having a good positive self confident attitude will help you succeed to beat this…Scott Lewis
It wasn’t bad news but not the good news you wanted; there is still hope. Nobody likes to exercise more than you do and now there is another purpose to the exercise. I’m 100% confident that your exercise diligence will conquer the
epiglottis weakness and return you to a semblance of normal. Stay positive, stay strong. God Bless Gordy and Diane!!
Gordy maybe we are tested as a measure of our strength. If so the Brene Brown quote could make sense in your & Diane’s case. You are both so very strong you are being tested to help others who may need it. So stay strong and positive. The fight continues.
Dear Gordy !! Once again, your post is incredibly insightful for all that read it; and I hope that, at least in a small way, it is also therapeutic for you. The strength you both have shown in dealing with all of this, while maintaining an incredibly bright outlook (at least to those of us not living through it), is remarkable — a true testament. Please, if there is ANYTHING that you both might need, do not hesitate to call me.
Your friend for life — and a Fenger legacy ……
Scott
Thanks for the update. What a journey you have been on. Praying that those exercises get those muscles strengthened. My uncle had radiation treatment over 30 years ago for a tumor in his stomach area. The tumor shrank and has not come back but about 10 years ago he started having some foot pain. About 4 years ago it got to where it really bothered him. Went to a specialist–they said it was a result of the radiation treatments over 30 years ago. He is like you–he is glad to be alive and have enjoyed these years but at the same time he wishes he could get rid of this pain and not have bad days where he can hardly walk or drive. He does have many good days.
Prayers continue for you and Diane.
You’ve always been a person who liked to exercise to keep in shape. So, exercising that epiglottis muscle of yours two times a day should be a piece of cake for you. EXERCISE IT!
Hope you know, Gordy, that your experience reminds us all both of our mortality and of the strength within us to keep the sun above the horizon. Continue the fight good pal.
Rolf
On Wed, Nov 3, 2021, 9:40 AM Gordy and the Fourth Quarter wrote:
> dmtgat posted: ” Friday, October 29, 2021 It has been two weeks since the > happy dance celebration with wonderful MRI results. Monday is November > 1st, and I have been pondering what that will bring. Since the beginning of > this journey on July 2nd, Diane and I hav” >
Survival guide is an amazing way to put it.
C- isn’t a bad score Gordy. At least that is what you use to tell Grybash when you passed out the results of a test he had taken. 😁 (Then again maybe that was me you were telling.)
Thanks for giving us an even better description of how your digesting of food is being processed. The training of that small muscle gives you hope and that is something you, Diane, all of your family, friends and followers didn’t have much of a few weeks ago. Hang in there!
You continue to be in my prayers.
Thank you for the updates Gordy. I can only imagine the grueling routine you and Diane go through every day with this procedure of “eating” to survive. I know you will do everything in your power to get this thing working in your favor. Sometimes we don’t realize what kind of influence we are on people. In your case I can assure you, you are having a huge influence on your friends and family! For that I say Thank You!
You and Diane remain in our prayers! Leatherneck strong!
Larry and Faye Falzone
Thank you for the well written explanation of things. I can only imagine what you are going through. We will keep you in our thoughts and prayers. We admire both you and Diane’s positive attitude and perseverance. Love you both. Ruthie and Steve
Well, seeing as graduated from WIU with a C minus GPA, got my degree and had a pretty great career, I’d say things could be worse. But yeah… the PEG thing. Hope you can rehab those muscles to the point where you can go back to eating and drinking (Diet Coke of course).
I’m still pulling for you from the hometown!
Dear Gordy, thanks for sharing your journey. If anyone can overcome this and exercise their throat, it will be you! And….just as I learned in college, Remember, Cs get degrees!
Keep your chin up and fly high.
You and Diane are an inspiration to so many; so hang in there!! I’m confident the exercises will be successful—-just think of it as another part of the plan to help others face adversity and overcome! As my grandma said—a C is average which you can live with, but also offers the opportunity for exciting improvements. Stay fierce!!!
Praying daily for you and Diane. Gordy you really are the strongest person I know. It’s ok to cry when there’s too much on your mind, the clouds rain too when things get too heavy. 💙🙏💙
Love you dear friend.
Dear Gordy and Diane, Take the C- and push it to B than an A. Sharing your journey proves that one can find the sunshine, rainbow or pot of gold. May the force be with you
Great attitude my Friend..Maybe a video on fighting medical challenges in the “ 4th Quarter “ would be your gift to others
Luv ya Dr.Taylor, Modo
Sent from my iPhone
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Dear Gordy, you and Diane really are an inspiration to all. I pray for both of you every day! Having known you for a long time and the persistence that you have, you will get that back🙏🏼 I love how you tell the good with the bad! Love you guys❤️🙏🏼🙏🏼
Gordie and Diane, I wanted you to know my sister Linda died Sunday night of a severe reaction to a new chemo for her ovarian cancer. She lived with it for four years and was feeling better than she had for awhile. But her doctor wanted her to try ifosfamide. After two days, she slipped into a coma and died five days later from neurotoxicity. I was alone with her when she stopped breathing. Her husband and my older sister had gone home for the night. I truly hope she is with our mother and father, but I just don’t know. Her obituary is in today’s Voice.
I am so glad for your good news and sorry for your suffering. Cancer is such an ugly disease and so are the treatments for it. Let’s all hope for a day when we can be treated with a magic gun-shaped zapper by that Star Trek doctor.
“ Never let the things you cannot do prevent you from doing the things you can.” Such a famous quote by coach John Wooden! You are a walking, talking example of this Gordy! We all wait patiently (well most of the time) to hear from you, hoping and praying for good news. Two weeks ago, we got that good news! Today, we all continue to hope! Your words touch the very depths of our hearts, and we all try to imagine what you and Diane are going through. So, you may not be eating like all the rest of us, but you certainly are touching all of our lives in a way that makes each of us count our blessings and hug our loved ones a little tighter! You are such an inspiration and we all will continue to pray for better days for the Taylor’s! Continue to do the things you CAN, knowing that your “army” is fighting hard for you!! We love you guys‼️💗💗
Gordy, Your command of the English language,creativity, and positive attitude make your blog a joy to read! May the Lord continue to bless and use you and Diane! David and Shirley
No one can tell their story like you,Gordy. Both you and Diane are an inspiration to us all. You both remain daily in my prayers.🙏
For Lindy and I, you and Diane are positive examples for us. Lindy faces a lot of ups and downs with his health issues and this week he again faces surgery. We again will wait and see..not as serious as yours BUT
We pray for you both. C- is ok. Thank you!
Hi Gordy! It’s been a long time. Just to let you know you’re in my prayers. Glad I found your blog, I can’t imagine going through what all you and Diane have. Positive thoughts going your way! Rima (Niemi)
You’re right , it’s not cancer which is wonderful. I know it’s tough, but being positive has it’s benefits, mostly less stress on you and Diane, but mostly on your body. We love you both, and are here for you. We will definitely keep you in our prayers and in only positive thoughts. 🥰
Since a C- in your class was equivalent to an A in Robert Jefferson or John McCarthys class that’s not a bad grade at all. Hurry up, get better – you definitely will due to your tenacity, perseverance and love from Diane. Then I can buy you that dinner that is past due.
Think of you and Diane very often. Our prayers are with you.
Miss seeing you and others from the neighborhood. J&J
“don’t give up, don’t ever give up”.. You know this Jimmy Valvano quote. You and my youngest son are living examples of this. Hang in there Gordy and remain positive.
Gordy and Lady Di are an inspiration to us all. And WIU won a FB game !
One day at a time. I wish I could say more. Stay strong always. I know you will do whatever it takes. Good thoughts and prayers.🙏🙏🤗🤗
Your ability to put into words this journey you are on is nothing short of amazing! You have always seemed to be able to find the humor in any situation, I know that serves you well. The quote at the end is so true, your journey may well help someone else down the road. Take care. I will be praying for the therapy to work and for you and PEG to part company.
I’m not sure you should blame the radiation – perhaps you just wore out that muscle with you non stop chatter
Gordy, I follow your journey with much interest and, because of your increasing understanding and ability to explain (on my level) medical phenomenon, I share both your joy and angst. Clearly, living normally would be more fun. And along with your family and all who love you, I await that happy report. I love you brother. Many do. Blessings on you, Dave Roberts
You’re braver than you believe, and stronger than you seem..
—A.A. Milne
Gordy,
Your energy and positive attitude has always impressed everyone. Through mass consciousness, we will all get you and Diane through this challenge.
Gordy, I’m glad that there is still hope. My wish is that you do get the whole enchilada and actually be able to eat one!
Gordy-You and Diane have fought an amazing battle with this thing, and we know you will continue to do so. Hope the new treatment rings relief.
Based on your medical knowledge… I think I will address you as Doctor-Doctor Gordy Taylor. Wow what a journey! Do you therapy and get better quickly. We all need you.
Gordy that is all good news with possible continuing improvements. Praying for you and Diane with good positive results.
Stay positive, Gordy. You’re strong and full of life. You’ve got this.
John
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Have been waiting for an update. Can only imagine the fatique of the waiting and the whole process. Your positive attitude and reality check will make this journey a success. I give you an A+ for this C- experience.
Half full Gordy, half full!
It is understandable that this development would get you down. We are praying that the PT will make a difference so you can return to a normal lifestyle. All the best, Gordy!