Seeking Equilibrium

I have always been very active, and for me, sports has been my primary relief. I played touch football into my 30s, basketball into my 40s, and softball until age 60. One constant through all of this has been jogging though in the past few years, I have discovered Western's fabulous Spencer Recreation Center where I do the elliptical and a little work on the weights. Gordy Taylor has not been in the Rec Center since mid April. My goal is to resume visits to the Rec Center in October when outside walks become more difficult because of the weather. There is little doubt that Dr. Diane will monitor my return and try to control my level of intensity. This is okay with me as I tend to get an idea in my head and then take it too far.

Lately, I have played a little tennis--nothing too vigorous and it's doubles so not too much running. Not sure what is happening but I've always been pretty agile and quick. I didn't say good just able to move around pretty well. A new era has begun. My mind says "go for it, you can make that shot" but my body says "who are you kidding?" If someone were filming me, I fear I'd look like a 95-year old man attempting to play a young person's game. My body seems to be much more rigid and inflexible than I can remember.

Now, Dr. Diane informs me that I really haven't done much since April and "hey, Gord, you had cancer, radiation, chemotherapy, were hospitalized twice, slept 17 hours per day, and were in the prone position the other 7 hours. You were one sick puppy and your body naturally atrophied. While you have come back, your muscle tone is not what it was so remember, PATIENCE." There's that word again. It is obvious my body like my mind is seeking a new equilibrium in terms of balance regarding what I will be able to do in the future.

No one comes back 100% after head/neck cancers, and I'm told 80% is a good number to shoot for in terms recovery expectations. Since I have always been so active, my guess is my 80% will be tolerable. This is another adjustment I need to cope with; it's not easy. I have given up so many things--food, wine, diet coke, popcorn, sandwiches, red meat, ice tea, lemonade, and vigorous exercise. When added together, it seems like a lot to me but then, on the other hand, every day above ground is a great day!!! So shut up, Gordy, and get on with my life.

I watch more tv than I used to and last night I caught the last half hour of Planes, Trains, and Automobiles starring John Candy and Steve Martin. I laughed out loud and then at the end, I cried like a baby. The message of the movie is about friendships, and I'm reminded how lucky I am in that regard. One final observation here while on the topic of emotions. I have always been a softy when it comes to tugs at the heart strings, but I find myself more sentimental and subject to tearing up more than I can ever remember. This is okay. My list of tear jerkers includes Brian's Song, My Dog Skip, Old Yeller, and of course Sophie's Choice but these days, I can get emotional watching a good commercial. And so it goes.....

Dates

I have always been pretty good remembering significant dates i.e. birthdays, anniversaries. I now find myself with a whole new set of milestone dates to mark on my calendar. Specifically these would include the following:

March 2nd: First visit with Dr. Lozano, ENT specialist, mass discovered at base of tongue
March 4th: Biopsy indicates one-inch, stage 2, malignant tumor
March 29th: Meet with Dr. Pelzer at Northwestern Memorial Hospital in Chicago who concurs with treatment plan recommended by Cancer Care Center in West Burlington, IA.
April 20th: PEG feeding tube surgery
April 22nd: First radiation treatment with mask
April 23rd: First chemotherapy infusion
June 10th: Final radiation blast
August 25th: PET Scan
August 27th: Hot spots discovered

For whatever reason, these are now dates I will not forget. I continue to improve and am down to 4 cans of product per day. I eat different food groups with minimal problems swallowing as long as I use lots of water. The downside of all of this and there are some is that I am always have a dry mouth and have to drink water every where I go. In addition, my taste buds have been severely compromised so really nothing tastes good or in most cases has any taste at all. I used to "live to eat" and now I "eat to live." There is a huge difference, but this should improve over time. Unfortunately, I'm told the salivary glands and taste buds never fully recover as many of them have been destroyed by radiation.

The last couple of weeks have been interesting for Diane and me. We are trying mightily NOT to project too much into the future, but it is hard work. Deep down we feel the hot spots are nothing and will not be there in November, but what if? For anybody who has travelled this road, there is the anguish that accompanies uncertainty about one's future. No doubt, as November approaches the reality of what could come to pass will loom as a possibility that has to be addressed. The mind is fascinating in terms of what we let in and what we choose to keep out. Yes, we will continue to take it one day at a time and focus on the positive, but that is easier said than done.

ENT Doctor's Visit and Go Ensure!

We met with Dr. Henrich, ENT specialist, on Wednesday, September 1st. He did the scope thing and said, "things are clear on the back of your tongue." That is good news. However, there is always that question mark concerning the hot spots and he addressed it straight on. The hope is that they disappear but there is the possibility they will not in which case, let's not go there. Diane and I try to look at the positive and there are many positives but we are lacking in what we refer to at 35 Indian Trail as an "arm flapper." Let me explain. Every family has them. They are just different for each of us.

This is the genesis of the phrase and meaning behind "arm flapper." When something really neat happened to daughter Jennifer when she was a baby and for the rest of her life including the present, she flaps her arms like she is going to fly. These are exciting and happy moments that don't happen every day but they are "arm flappers." We want an "arm flapper" and we shall get one in November!!

As for food, the progress has been extraordinary. While I still occasionally choke a bit as I did on a piece of cheese in French onion soup on Monday in front of David and Gretchen Miller at a wonderful French restaurant in Burlington, these food events are less and less frequent. However, when they happen, they are a bit disconcerting. I was sitting across the table from David when I knew I had a little problem and quickly got up and went outside to handle the situation. Poor David and Gretchen. They have been with us since the day I was diagnosed, and they just sat there as I returned as if nothing had happened. They are a very good sports.

I need to remember how far I've come in the last month. From eating almost nothing, I now am ready to attack most anything as long as I have water by my side. Today, I even had some biscuits and gravy and a couple of eggs. It takes me about 3 days to eat this but I do it as I need the calories. Unfortunately, nothing tastes very good and just prior to swallowing it is imperative that I take a large gulp of water. This is sort of a bummer but I am eating.

I reached a real milestone the other day as I drank a couple of bottles of Ensure. If you recall, the last time I tried this I promptly left it in our back yard. But not this time as I had not one but two servings. This is important because it means I have to take in two less cans of product through the pump per day and I'm now down to four cans of product a day. In the scope of things, this is indeed a major step forward.

Progress continues on other fronts as last night I attended the first half of the WIU/Valparaiso football game and took a walk with Diane and mowed the lawn today. I'm still awake at 7 p.m.

Anniversary Number 42

Diane and Gordy walking down the aisle at Gordon & Lisa's wedding on June 27, 2009.

Diane & Gordy, August 31, 1968, United Methodist Church in Winthrop Harbor, IL.

Gordy is having some product nourishment after we had a lovely lunch in celebration of our 42nd anniversary. In our new normal temporary life as a couple, restaurant dinners are on hold, but the lunch today was fantastic. Baby steps for the both of us.

We continue to be passengers on a roller coaster ride called life. Our day-to-day schedule resembles a merry-go-round. Then suddenly after a trip to the doctor or receiving test results, we are suddenly thrust onto the Screaming Eagle Roller Coaster. Couldn't there be a happy medium?

Rereading our recent entries, not many happy or humorous times are conveyed except for the hilarious "I don't know you" statement by Maury to Gordy. It was a priceless moment, folks, and one I'll never forget. But with today being our anniversary, it seems fitting to get a bit nostalgic. When I think about how we began our marriage, what we have experienced, and where we are now, we have come a looonnng way.

In 1968, we picked August 31st so that we could work our two jobs respectively to earn as much money as possible. After the TET offensive in February 1968, graduate school deferments were eliminated and Gordy got his 1A draft status in July just before our marriage. I quit college which had to disappoint my parents even though they never uttered those words; Gordy had a Title 4 fellowship for graduate school at the University of Florida. I needed to get a job once in Gainesville after we moved into a furnished apt. someone else rented for us--the rent was $102.50 per month. Our total income was $420 a month. My wedding dress cost $110. Our honeymoon was a two-night stay at a Howard Johnson's in Kenosha, Wisconsin. On our wedding night, we opened our cards and were elated that we had received a total of $800--wow, a jackpot!! We didn't have enough money for an engagement ring for me. Our car was a 1961 Chevy we called the "Blue Streak" and had to warm it up in Florida in order for it to run. Most of our wedding presents were boxed up and filled our car. When we got tired of driving in our unairconditioned car at night on the sojourn to Florida, we stopped at a rest stop and slept unafraid of possible intruders. A hotel room for 2 nights was too expensive. I didn't know how to cook; my first meal resulted in grilled chicken with crispy skin and raw meat. Gordy and I made our weekly trip to the laundry mat because I had never used one before marriage. Our grocery bill budget was $25 per week which included two 8-packs: one "real" Pepsi for me and one "real" Coca-Cola for Gordy. Having a McDonald's lunch once a week was a splurge. The two years in Gainesville were priceless.

Through the years, our lives have changed in many ways. Every marriage has its ups and downs--gosh, another reference to a roller coaster maybe? However, we are so fortunate to have found each other and fallen in love so many years ago. We've been blessed with Jennifer, John, Gordon, Lisa, Ryan, Luke, and James. The emotional support and love of our family and friends during the past 6 months are indescribable in importance for our survival and ability to withstand whatever comes our way. I asked my former neighbor, good friend, and breast cancer survivor from 1995 Sandi Ball about her time with cancer, her recovery/treatment, and what she had learned. She replied that she realized how much her husband Randy loved her. I hope Gordy knows how much I love him.

Thanks for allowing me to relive and relay a bit of our lives in 1968--it was a memorable year and I've had a wonderful life and will continue to do so with Gordon Arthur Taylor Jr. It's been a privilege being his Dr. Diane!!

Hurry Up and Wait

The news is not the best but it is clearly not the worst. Our appointment was at 11 a.m. but our new doctor did not make it to our examination room until 12:30. My guess is he is busy getting acclimated to his new environment and patient/clientele. However, Diane and I were very anxious, and it was just one of those days when we didn't want to wait to see anybody. Dr. Ali was very informative and thorough. Here is what we know after visiting with both Dr. Ali and radiation expert Dr. McGinnis:

There are two very tiny "hot spots" embedded in two lymph nodes. They may be either nothing more than residual results from the radiation or small early metastatic cancer in these two lymph nodes. Hopefully it is the former and McGinnis seems to think this is the case. If it is the latter, it is currently too small to be significant or even treated via any surgery. Dr. Ali recommends and Dr. McGinnis concurs that we should wait and do another PET scan after Thanksgiving. If something of concern is there, since it is in the neck region, it will grow very slowly. No matter what the outcome today had been, normal protocol for base of tongue cancer would have been to do another PET scan in 3 months.

While we had hoped they would say "get out of here everything looks clean," that did not happen but we guess this is the second best option. Hey, I am not on my way to Iowa City for throat surgery--yet--and hope that situation will not come to pass as that would NOT be good. So there you have it; this is what we know to date.

Elie Wiesel, famous author and Holocaust survivor, explains why Diane and I are doing this blog when he says "Whoever survives a test, whatever it may be, must tell the story. That is his duty." We are doing our best to do just that. As we sit in our kitchen composing this, we are both exhausted. Physical labor is difficult and tiring, but I can assure you that chronic mental stress is not just tiring but can be debilitating as well. Naturally we will not let that happen as we are uplifted by the support we have received from you in many different forms. Friday we felt like someone had punched us in the stomach and today while not perfect we feel much better. Headaches seem to be the only side effect I'm experiencing.

Son of a Bitch!!!!

I have found that my experience with cancer has not been a linear process with predictability the order of the day. Few surprises have come my way after the initial diagnosis as my doctors, Don Patterson, and Maury Coats have prepared me for most every eventuality--until now. Diane and I decided to wait for some good results as I had a PET scan on Wednesday (a test that detects active cells in the body--these active cells are usually cancer cells). My follow-up appointments were this morning in Burlington.

I awoke at 1 a.m. and had a couple of cans of product, went back to sleep, and had another can at 4:30 followed by a 4th can at 6:30 a.m. This was done because I knew I would be gone until mid afternoon and I had to get my daily regimen of calories, vitamins, and protein. While we don't project too much about all of this, today's visit with the doctors has been on our minds for the last couple of days. During my life, I have had the good fortune of controlling much of what happens to me in terms of what I do, how I do it, and when I do it. Not so this time. Cancer takes a certain amount of control from you.

As I sat in the waiting room, I felt very much like I did 30 years ago when I was pursuing the Ph.D. at the University of Florida. While it wasn't his fault, I feared every visit with my main professor Dr. Fox and the calm, cool, collected Gordy Taylor would get that horrible nervous perspiration every time I got within 50 miles of Gainesville, Florida. It was a scary time in my life, and I always felt that I was at the mercy of Dr. Fox and my other committee members. I had the same feeling this morning.

I had used 14 containers of deodorant but to no avail. For the first time instead of me feeling nauseous, Diane thought she was going to hurl. Now Diane had bought Dr. El-Khoury a beautiful purple tie at the Polo store when she was in Chicago last week. As she handed him the package, I joked that it was really purchased at Wal-Mart and simply put in a Polo box. This is his last day at the Cancer Care Center and will be moving to Dubai with his family. We exchanged pleasantries, but we both thought it odd that he didn't immediately say, "the PET-scan is clear, way to go!" Instead I had to ask, "what about the PET-scan?"

We couldn't believe our ears, and we looked at each other as he said, "there are a couple of little hot spots in your neck that need further testing." My mind was racing. I kept repeating to myself "son of a bitch!" Couldn't the guy have just said that everything was fine. He is a wonderful man, and I'm sure he hated giving us that news.

Time to move forward. The superb staff at Cancer Care Center arranged for a 2:30 CT-Scan with contrast at Great River Medical Center which will give more information. On the way home, I developed a nasty headache and upon arrival at 35 Indian Trail attempted to swallow a couple of Advil which promptly lodged in my throat. "Come on, give me a break, it's just a couple of Advil."

It is now 5 p.m. and I'm done feeling sorry for myself--sort of. We return to Burlington on Monday morning for the test results. The best case scenario is that there is nothing to worry about, simply an anomaly. Worst case is surgery at the University of Iowa. We are betting on the former.

It is important to maintain perspective here. The base of tongue cancer is gone. The PET scan could have indicated that cancer had spread to other organs, but it hasn't. My life is somewhat returning to normalcy with daily walks, eating more "regular" food, and even playing a little tennis. I have much to be thankful for and look forward to a 42nd anniversary lunch with Diane at Shiloh's (a new restaurant in Macomb) on August 31st. Son of bitch, it's been a helluva 6 months and Monday will start another chapter for us. If this has been too lengthy of an explanation, I apologize but I've tried to capture our feelings, our fears, and our concerns as this story unfolds in real time.

A Thursday with Maury and Humility is Good

I am part of a small and exclusive fraternity--people who have been diagnosed with base of tongue cancer. Many individuals have been helpful to us concerning our journey particularly those suffering similar types of neck cancers such as throat and tonsilar. Most notably Coach Don Patterson who has been there for me locally every step of the way.

There is, however, one person I've connected with who has survived base of tongue cancer including a cancerous lymph node. Eldon and Maureen Hare, long-time Macomb residents, heard through a mutual friend about my diagnosis and hooked us up with Maury and Sandi Coats who currently live on 34-foot boat but previously called Austin, TX, their home. As it turns out, Maury is the son of a famous Macomb barber, grew up in Macomb, and graduated from Western Illinois University in 1959.

Prior to meeting Maury and Sandi last week, all I knew is that he had survived base of tongue cancer for 3 years and was doing quite well. We initially communicated via email and phone calls until the Coats made a trip to Macomb to visit the Hares and kindly consented to meet with Diane and me.

We spent about two hours at 35 Indian Trail as Diane and I queried Maury and Sandi about every phase of their cancer journey. It was wonderful to sit there talking to someone who had literally walked in my shoes. Shared experiences eased our anxieties and at the end of the visit, I asked Maury what advice he had for me. He quickly responded, "one word, Gordy, PATIENCE. It will take months and maybe a year before you resemble and feel like the man you did before your diagnosis." For Diane and me it was almost a spiritual experience and we are much appreciative to Maury and Sandi and Eldon and Maureen.

As for humility, life sometimes surprises us in ways we never expect and these can be both serious or light and humorous. I had one of the latter with Maury. Due to my professional background, I tend to begin conversations asking people where they are from, where they went to school, and a bit about their family. I did just this with Maury. Now I must be candid here. I would be less than truthful if I didn't admit that I enjoy a certain name recognition in Macomb because of my local-access interview TV show Across the Miles and Western's alumni constituency because of my teaching and alumni careers.

My photo appeared in the Western News for 28 years; I had a column that people read or so I thought. As we sat in our family room, Maury revealed that, as mentioned previously, he was a townie and a 1959 graduate of WIU. I was excited. These were Western's glory years in football and basketball and Maury and Eldon were in the pep band. Clearly, Maury already knew who I was and not just as a base of tongue compatriot but certainly as the "alumni guy." Now we had only been together for 5 minutes when all this happened. As soon as he mentioned he had graduated in 1959, I said, "well, then you know me." He replied, "never heard of you except through this shared experience." I said, "Maury, don't you get the Western News? Haven't you ever read my column or seen my photo?" He answered, "yes, I get it but I've never read it and never heard of you." I sat there incredulously with a shocked look on my face while Diane held her sides and laughed uncontrollably. It was a divine moment. A dose of humility is good for all of us.

The Taylors will forever be indebted and connected to Maury and Sandi Coats. Thanks for being there for us.