The Road Ahead

I'm back, sort of.... I still need to figure out the balance thing in terms of what I can and cannot do which, of course, is nothing new for me. This week provided a vivid example of what I mean. In the morning, I interviewed Tom Carper, former mayor of Macomb and now Chairman of the Board for Amtrack, on Across the Miles. The focus was on the future of passenger rail in the United States--very informative. My next stop was the Macomb Rotary Club where I was asked to speak on "making a difference," a speech I have probably given a thousand times. Things began well and then life got in the way. As I was taking a bite of pork tenderloin, the young lady who was to introduce me inquired as to whether my bout with cancer would affect my speaking. I swallowed and turned to answer her question when the pork inconveniently got lodged in my throat. I put a napkin in front of my mouth, walked across the room to the men's bathroom, hit myself on the back, and dislodged the contents of my mouth in the sink. Not a pretty sight but my throat was clear.

I returned to the table and reassured Esther that this didn't happen too often and I would be fine. When I got up to speak, I found that for the first five minutes or so my voice was rather strained because of stress I had temporarily put on my throat. Things got better, and I successfully completed my remarks. This resulted in a learning experience. Of course, Dr. Diane had cautioned me earlier not to attempt to do both an hour interview and a speech in the same day, but naturally, I knew better. In my defense, had I not choked I would have been fine but that's not the way things worked out. Patience, Gord, patience.

As a person who has dealt with cancer, your view of the future changes. I continue to deal with salivary issues and my taste buds are very slow to recover but progress is being made. I NEED to remember that! But my perspective on things is a bit different these days. One of my tongue cancer pen pals reminded me recently that if you are cancer free with base of tongue cancer for 2 years the prognosis is very good. Jeepers--that shook me up a little as I just assumed I was "in the clear" and didn't think about a possible reoccurence. I guess that's my positive mental attitude.

Michael Douglas and I'm rather upset about this, has gotten much more publicity than me regarding our mutual base of tongue cancer condition. Ok, ok, I'm just kidding here. Douglas did an interview with Matt Lauer, and Michael said two things that really caught my attention. When Lauer asked him how cancer has changed his life, Douglas replied, "I'm now in the third act of my life." As someone who is turning 65 next month, I realize that cancer or no cancer, I too am in my third act. Matt mentioned that Michael will now have another descriptor added to his name: cancer survivor, to which Michael replied with a big smile, "From your lips to God's ears." I liked that very much.

During the course of the interview, Douglas mentioned that he was struck by the level of genuine affection family and friends had shown him during this difficult period. That comment really resonated with me as both Diane and I have been bolstered by the way we are treated. It seems like every time we are out, people come up to us and are sincerely happy to see us. Not that this hasn't always been the case, but it is different now as we know folks are responding to our "situation." It is just nice to know that people care, really care.

I Got the Girl

Diane & Gordy, August 31, 1968

It was nothing special, just another laker but that particular night would change my life FOREVER!! It was April 1, 1967 (Yes, April Fool’s Day) and four guys from Seal Hall had blind dates with four “girls” from Grote Hall at Lake Argyle State Park. I ended up with Diane Paulsen from Winthrop Harbor. She thought I was kind of funny, not particularly good-looking, but what the heck it was just a blind date. As I recall, and I recall it vividly, we drank a couple? of those little cans of malt liquor and I believe kissed a little. A couple of nights later it was a Dairy Queen date, then a movie, and pretty soon I was a goner.

We got married on August 31, 1968, and somewhere in the vows we both mumbled something about “for better or for worse, in sickness and in health.” Little did we know what lied ahead. The Vietnam War was raging, but we took a chance and it was off to The University of Florida where I had a fellowship, and Diane got a job as a secretary. We left Illinois in a 1960 Chevrolet Impala that already had over 100,000 miles on it and $700 in our pocket. We returned to Macomb and Western Illinois University in 1970 and this has been our home ever since. Three terrific children, a fine son –in-law, wonderful daughter-in-law, two fun grandsons, and a couple of rewarding careers and by and large, it has been all positive.

Now let’s be honest here. There were some ups and downs. After all, I am a product of the 1950s and I believed that marriage was a 50-50 proposition: the 50 % Diane gave and the 50% I took. It took awhile but I ultimately grew up (sort of) and realized how lucky I was that fate had brought Harry and Ann Paulsen’s oldest daughter into my life. I won’t say raising the kids was a breeze but we figured it out and parenting came pretty easy to us.

Good health has been our good fortune throughout our marriage until that biopsy report on March 4, 2010. What a bombshell. Remember a couple of paragraphs ago where I mentioned “for better or for worse, in sickness and in health?” Diane learned first hand what that meant. Now I am the one who had cancer, and it has not been the best thing that ever happened to me BUT and it is a big but, for seven months, it was all about me. People sent me cards, emails, phoned me, brought over soup, and did whatever they could to help out. Heck, I’d be out for a walk and women would stop their cars in the middle of the street and run over and give me a hug. That was pretty neat. I didn’t experience that much pain as I was heavily medicated. It was difficult but I don’t remember a lot of it. Not so for Diane.

For the duration of my battle, she was the one who fed me through the feeding tube, ground up medications, fluffed up my pillows, got me water, drove me back and forth to Burlington, made all my doctor appointments, screened phone calls, answered the same questions a thousand different times, managed the upkeep of the house, supervised the kitchen remodeling project, and was there for my every need. No medications for Diane to ease her pain as she watched her husband atrophy and go from 180 to 153 pounds and there was nothing she could do about it. At times, I could see it in her eyes. Here was this guy who had literally never been sick and he was in a life and death struggle and her job was to do all she could to help me recover. Remember, she has our kids to think about and her 89-year-old Dad and 87-year-old Mom who also needed her in their lives.

Never once did Diane falter in her new duties as caretaker. Oh, she raised her voice a few times, took some long walks alone, got out for an occasional dinner with friends but she was always there for me in ways I will never comprehend. Relative normalcy has returned to our lives. I improve daily and the taste buds/ salivary glands battle continues but life is pretty good. I hope our lives are such that I never have to pay Diane back in kind, but let me assure you that if that day were to come, I will be ready to return the favor. We have always lived by the Golden Rule; it has served us well.

As I type this and I actually am typing this today, I get a bit teary-eyed when I think back to how lucky I was on April 1, 1967. I have been blessed. Family and friends have always been there for me and for that I am most grateful. Yet as I approach my 65th birthday next month, I realize that my greatest blessing is meeting and sharing my life with Diane Margaret Paulsen. She is off for a much-deserved visit to see the Stevensons in Corpus Christi. I love you, Diane. Safe travels.

Maury and Don--There for Me

Don Patterson

Maury Coats

Oh, I’m so delighted to see 2011 arrive. 2010 was, shall we say, just not my year. I’ve said my thank yous to everyone I know but if I’ve inadvertently omitted someone, I apologize. There are two people who played a unique role for me this past year, and I need to thank them publicly. Don Patterson and Maury Coats were my knights in shining armor. Seldom did either of them say anything to me that I wanted to hear but rather they told it like it was. After all, they had been there and each, in their own way, gave me sage advice.

Don Patterson had tonsillar cancer and when diagnosed, he was at Stage Four. Don was the head football coach at Western Illinois University for many years so we knew each other quite well. He spoke at our alumni events from time to time; we became friends. When word got out that I had base of tongue cancer, one of the first calls I got was from Don. He was brutally candid but what do you expect from a college football coach who makes a living motivating college men. Don was the first person to utter the words to me, “Gordy, I can tell you four things. The diagnosis is serious and scary. The treatment will be awful. The recovery will be painstakingly slow and difficult. And, my friend, and always remember this, the prognosis is usually excellent.”

Don and I spoke frequently over the next 8 months as he prepared me for what was to come: fatigue, nausea, loss of appetite, inability to swallow, living with a feeding tube, loss of weight, and a thousand other issues that I would face. He also told me I would get to know and appreciate Diane like I never had before. As he said, “Cancer tests a marriage, but you and I are both lucky, me with Lisa and you with Diane.”

One event in particular sticks out regarding Don and his role in my odyssey. I told him that PEG had been inserted in my stomach. The date was April 20, 2010. I did not know anything about how it would “work” and frankly I was a bit overwhelmed. That very afternoon there was a knock on the door. It was Don and Diane escorted him to my room which he entered carrying a stand used to hook up my feeding bag. He left the room for a couple of minutes and returned carrying several cases of the now infamous “product.” Next he showed me what to do and got me started. Naturally, he didn’t have to do any of this but he did. It was a moment I will never forget. There we were, a couple of old jocks, one on the mend and the other preparing to embark on an adventure with an uncertain ending. I didn’t realize it until months later, but Don’s act of kindness and compassion had a profound impact on me. He knew what I didn’t know about what lied ahead and he was there to guide me.

I need to include a quick note of clarification here. The folks at the Macomb Home Health Center were also terrific in setting me up and I do not want to minimize their efforts on my behalf.

Maury Coats is a different story. You know Maury. He’s the WIU grad, class of 1959 who received, but never read the Western News or my column therein, and had the audacity to look me in the eye in my family room and say, “Gordy Taylor, never heard of you until Eldon and Maureen Hare told me some guy they knew had the same kind of cancer I had.” You remember what happened next as I wrote about it earlier here. Diane Taylor had to be helped off the floor laughing uncontrollably with tears in her eyes as she looked at her dumbfounded husband.

My comments regarding Maury are not as lengthy as those on Don, but they are no less heartfelt or significant. My first contact with Maury was a phone call. He called “out of the blue” after hearing about me from the Hares and said, “I’m Maury Coats and I had base of tongue cancer and I’m here for you.” Bingo!! Maury had the precise type of cancer I had and was a three-year survivor. He was marvelous and though he was currently in Massachusetts we emailed and spoke on the phone. He sugarcoated NOTHING but had a way of putting me at ease. “Take the medication, don’t overdue it, this will be tough BUT you will survive.” Like Don, he related that I was fortunate to have a supportive wife and that his wife Sandi had been there every step of the way to support him.

On a visit to Macomb to see the Hares, Maury and Sandi took time from their schedules to make what I refer to as the infamous visit to 35 Indian Trail. There on our couch was a real base of tongue cancer survivor, and he looked robust and healthy. There was hope for me. Maury Coats had never met me but he has been the other bookend to complement Don Patterson and to both men I say, “Thanks guys for being there for me. Your support has been invaluable.”

A Look Back and the View Ahead

A Look Back

To be blunt, 2010 was quite a year at our house. What started as our usual fun trip to Florida developed into our own personal odyssey that we hope is not soon, if ever, repeated. I will not rehash all that happened here but a couple of observations are in order. Over the holidays we have had many visits with loved ones, and it is clear that, for me, I lived May and June pretty much in a drug-induced fog or coma. People will mention things, and I vaguely at best have some idea what they are talking about. All I can say is that I am glad 2010 is over and that it ended on a very positive note health wise.

Diane and I ended the year with a bang. Clean bill of health on November 29th, precancerous face treatment on December 1st, PEG removed on the 3rd, a great week in Chicago December 7-13 visiting family and friends, and finally a visit with the grandsons, Jennifer and John in Texas December 14-22. It is good to be back home, but it was exciting.

As I assess 2010 and the state of my health, I need to be honest with myself. I am better, much better, but I am not 100% nor will I ever be. I need to get my hands around this "new normal." I am walking an hour everyday and lately have even done so outside bundled up quite well. BUT, I still have an occasional choking episode--nothing too dramatic, just a quick exit from the table while I expectorate to clear my throat passage--more embarrassing than anything else. The salivary gland issue is a pain but is what it is and is endurable. My major complaint or issue is the taste buds. Imagine eating EVERY meal, and it is never pleasurable. I get it done but can't taste much and have to gulp lots of water to simply get the food down to where it needs to go. I can taste a little but not like the old days and it is frustrating and frankly a bit depressing. I'm told by my sponsors, Don Patterson and Maury Coats, that it will get better over time but yes, I'm a little impatient.

Also, it's the little things that get my attention. I get pain in the back of my head at the end of the day, have an occasional nasty bloody nose, don't feel like jogging or doing some of the high energy things I used to take for granted. My guess is, this is all part of the deal that comes with poisoning your body with chemo and radiation while killing the cancer so I am not surprised, just wondering what part of all this is cancer related and what part is being almost age 65. It has only been 7 months since treatment stopped and I'm told, "give it a year" so I will dutifully acknowledge that reality and reserve lamenting this part of recovery until June 10, 2011. All in all, 2010 an interesting year for the Taylor family but I am clearly ready to have the focus off me and on brighter topics in 2011.

The View Ahead

I am confident that 2011 will be not a good, but an excellent year as my recovery progresses. I have made ONE major decision and believe it is in my best interest but know it will disappoint some of our Florida friends. While taking a long walk along the waterfront in Corpus Christi a couple of weeks ago, it dawned on me that two months traveling to, staying in and returning from Florida to Macomb driving 3000 miles might not be the ticket to good health for Gordy Taylor in 2011. There is a certain comfort to my "routine" at 35 Indian Trail and the stability it brings me. Short trips are fine but for now, I don't think I'm ready for the "long haul." Consequently, we have decided to "stay put" for the next couple of months with the exception of a return trip to Texas by Diane in January and a possibly brief visit to Chicago in February.

I will keep busy with Across the Miles and visits to the Spencer Rec Center on campus to walk and attempt to build up a little muscle tone after the misadventures of the past year. We will finally use some of those Marriott points and venture to South Beach Miami for two weeks the last week of February and first week of March--come on, you didn't think we could totally wean ourselves from Florida did you? I am comfortable with this decision and based on where my body is now, feel moderation is the way to go in 2011. Our best to all of you for a healthy, happy, productive 2011.

Merry Christmas, Season's Greetings, Happy New Year

October 2010

The following is our Christmas letter for 2010. God has blessed us in so many ways. Right now in Macomb a beautiful snowfall has made for a winter wonderland and a white Christmas.

Merry Christmas, Season’s Greetings, Happy New Year!
The year 2010 was another eventful year for the Taylors. As you would expect, there was both good and bad news but that is the nature of life.

Diane’s parents are doing well. Harry (89) is in a nursing home with vascular dementia and Anna (87 on Christmas Day) is in the next building that is an assisted living facility. Brother Paul and his wife Marsha do a wonderful job of helping them.

The Stevensons continue to reside in Corpus Christi, TX. Luke (6) loves being in Kindergarten and James is a very talkative 2 year-old. John continues to work as a construction foreman. In addition to being a mom, Jen manages an apartment complex. We had a fun visit with them in February in Fort Myers Beach, FL, and another one in Macomb in October. We wish they lived closer, but we see them as often as possible. There is much excitement in our family as baby number 3 is due May 31, 2011.

Gordon and Lisa reside in Chicago where he is the Associate Director of Sales at the Hyatt Regency. Lisa recently took a position as the National Director of Marketing and Public Relations for BBJ Linen which has 24 U.S. offices. In September, they vacationed in London, Paris, and Zurich where they had a fabulous time.

Ryan is entering his sixth year as an associate at the Tressler LLP law firm in the Sears/Willis Tower. Ryan and Gordon attend as many Chicago-area supporting events as their busy schedules permit. It is comforting having our sons and Lisa close enough that we can see them on a fairly regular basis.

Reluctantly, the biggest event this year goes to Gordy. In February he complained of a sore throat and earache and in early March was diagnosed with base of tongue squamous cell carcinoma. The treatment of this type of cancer involved 35 radiation sessions and 5 chemotherapy infusions over 7 weeks beginning April 22nd and ending June 10th. Simply stated, the diagnosis is devastating, the treatment is awful, and recovery is slow. However, the prognosis is excellent as Gordy’s recent PET scan results indicate that he is clear of cancer for now. This has been an experience none of us will ever forget. Our “c” journey can be followed on http://www.gordytaylor2010.blogspot.com

Our roles as patient and caregiver have brought us even closer together after 42 years of marriage. It has been quite an adventure. Diane always wanted to be in the medical profession, and “Dr. Diane” got her chance administering meds and taking care of Gord. Diane finally felt comfortable leaving “the patient” and attended her nephew Derek’s wedding in July, spent four days in Chicago with one of her Macomb friends, visited the Stevensons in August, and traveled to New York City in October with longtime friends from our days on Glenoak Drive.

Please accept our sincere and heartfelt thanks for your cards, letters, emails, phone calls, visits, meals, driving, flowers, conversations, and last but certainly not the least, prayers. They comforted us, gave us hope, and helped to get us through this ordeal. People have been very generous in sharing their good will with the Taylors, and this has been sustaining and nurturing. We want to reach out this joyous holiday season to those who have lifted us up with their kindnesses with a huge thank you! We are humbled and blessed. This has been a special year. Best wishes for a joyous and healthy 2011.

Quotables

The past week was rather frenetic but also fun as we shopped and ate our way through Chicago. Progress on the taste bud front is painstakingly slow and food simply does not have much taste. I eat not because it tastes good but because I have to and this is a major adjustment for me. However, as Dr. Diane says, "December 10th marked 6 months since the last radiation treatment and it will be another 6 months before you have an accurate baseline as to how far you will come back from this odyssey."

There have been some interesting quotes thrown our way since March. We want to share some of them in no particular order:

If you are going through hell, keep going. by Winston Churchill
We knew this was going to be difficult and we needed to forge ahead each day. This quote was sent to us by many.

Take it one day at a time.
We had to do this. If at the beginning of treatment, we had to think about 35 radiation blasts, it would have been overwhelming so instead after each treatment, we crossed that day off the calendar. It made things more manageable.

How could Gordy Taylor get cancer of the tongue? His tongue never stops moving. Wayne McDaniel, Alumni Director Emeritus, University of Florida

What happened to the other 25 percent? Gordy Taylor after being informed by the ENT specialists that this type of cancer has a 75 percent recovery rate.

You idiot, your immune system has been severely compromised. TV producer Mark Dial when I said I tire easily.

You gotta believe. Jack Margenthaler, former head men's basketball coach at WIU.

You look thinner. How did you manage to lose weight? A friend who will go unnamed who knew of my condition but had a momentary mental lapse.

Please, God, make Papa get better so that we can play together. Grandson Luke Stevenson saying his nightly prayers.

I hate canned pears and applesauce. Gordy Taylor on his new diet.

Keep your positive mental attitude during this battle. Many friends and family.

Get better so you can plant more tulips. Sue Hunter Pearce

Sometimes I think men need to quit being such babies and man up and take it like a man and do what is right and don't let things beat you. Face it head on and see what you're made of. Your situation is grave; you have a choice too. I think you are doing all the right things. I bet your dad would be extremely proud of you. Gordon A. Taylor III

Everybody's trip comes to an end sometime, so it doesn't pay to obsess over when that might be, just focus on the job at hand--living life as we know it. Jerry Baranowski, WIU class of 1968

Okay, let's move on to Plan B. Diane Taylor when told her husband had a couple of "hot spots."

Let Go and Let God. Many folks suggested we do everything possible to battle the cancer and then turn it over to God as we had done everything we could do.

It if hurts, don't do it. If you're tired, rest. Dr. William McGinnis, Director of the Cancer Care Center in West Burlington, IA.

I can't believe you're going to mow the lawn. Diane Taylor to her idiot husband ten days after the end of radiation.

I don't have to wait for the report to tell you, it's malignant. Dr. Alexander Lozano, ENT specialist who performed the biopsy, to Diane.

What can I do to help? Friends and family.

It's time to pull up your big girl panties and deal with it. Unknown author. Diane loves this quote. Recently, her sister Ruth from Denver gave her a t-shirt with this saying printed on it just in case she ever forgets. During this battle with cancer as a caregiver, time wallowing in sadness and pity was out of the question. After all it was a war.

REFLECTIONS

Sunset at Fort Myers Beach, Florida

It has been a week since our good news on Monday, and we are finally slowing down and allowing ourselves to adjust to our good fortune. We did make a quick trip to Springfield on Tuesday/Wednesday as I had an appointment at the Southern Illinois University Med Center to get my face "blasted" to remove a bunch of precancerous cells. They put me under a "blue light" for 20 minutes and for a couple of days my face was "on fire." It is now full of red blotches, and I'm staying inside so as to not scare the neighbor children. We thought about putting a photo of me on the blog, but it would make you ill to look at me. The good news is that this is all temporary and should clear up in a week or so. The dermatologist says this has nothing to do with base of tongue cancer.

Then on Thursday morning, and I'm quoting another tongue cancer survivor, I "broke up with PEG!" Dr. Card, my local surgeon, had me lie down on a table and he said, "if this doesn't come out easily, we will go over to the hospital and do it." And with that, a quick pull and PEG and I officially parted company. There has been a little bleeding but that was to be expected and, of course, Dr. Diane has been there to (1) change the dressing and (2) tell me to slow down--go figure. I had been warned that acute pain can accompany PEG removal but fortunately for me that was not the case. Way to go, Dr. Card!!

Thursday afternoon, it hit us head on. I laid in my bed glad that it was all over. No more radiation, no more chemo (we hope), PEG removed, and my face treated. It was over, really over. I have no more doctors to see in the near future. As I relaxed in bed, I did just that: relaxed and thought how lucky I am. Diane played some bridge that afternoon, and then it hit her. She walked in the house, had a bowl of cereal, and went to bed. I think for the first time she could put all this behind her. I know I've been through a lot but Diane has been there every step of the way and as caretaker, this has had to have taken a toll on her.

Diane and I both feel a sense of relief and tranquility. It is difficult to verbalize, but we feel we are gradually getting our lives back from this visit to the precipice. Mind you, the journey is probably never over as one never knows what the future holds, but for now a feeling of peace. Heck, last night I had a "mild" choking episode but nothing like in the past; I simply let my guard down and wasn't paying attention to my chewing then water regimen.

All of this good fortune has been made even more poignant to us by the death this week at age 62 from aggressive prostate cancer of our local State Representative who was one of the world's nicest, most thoughtful men. The world is diminished by his passing. At the visitation, it hit us like a ton of bricks as we paid our last respects. In an email I received this week from Chuck Vokral, he said "God has shined on Gordy." That pretty much says it all. I am aware that the recovery component of all this continues but for now we plan to savour the moment and simply enjoy life.

We are off to Chicago Tuesday to see family and friends and then to Corpus Christi prior to Christmas to see Jennifer and her bustling family. In January, Diane will return to Corpus and then we intend to head to Florida for 6 weeks or so from early February until mid March followed (I told you this doesn't entirely disappear) by a visit to the Ear, Nose,Throat doctor at the end of the month.

But for now, this feeling of peace is to be taken and digested one day at a time. Like no other time in our lives, Diane and I are cognizant of the fragility of life and the reality that it can be swept away at any time. This is a sobering reality but our experience has made us ever more appreciative of the gift of life.