Perspective, Patience, and Tulips

Looking at the big picture makes it easier to tolerate most anything. I firmly believe that while my immediate future is sort of grim, the ultimate result will be very positive.

I am reminded of the article I wrote for the Western News about WIU's Head Football Coach, Bruce Craddock, who was diagnosed with terminal cancer. Here's what I wrote:

In February 1990, I was sitting in my office alone one morning with my thoughts. It was terrible outside: a freezing, subzero day with arctic winds. It was so bad classes had even been suspended. I was the only one in our office who made it in that day. As I sat at my desk reading the just published Western News, the phone rang. Who in the world would be calling on a day like this. It was Bruce Craddock. He called to tell me thanks for putting an update about his condition in the Western News. I will never forget that conversation. He said in that raspy voice of his, "Hi Gordy, it's me Bruce, how ya doing buddy?" There was no response from me. I simply couldn't get anything out. A lump the size of a watermelon had formed in my throat. How could this man, literally on his death bed, call me, tell me thanks, and ask how I was feeling? The answer was simple. It was Bruce Craddock. I'm sure he was smiling. He still maintained his positive attitude. I finally regained my compusure, and we had a nice visit. Two weeks later he died. Perspective.

It is no secret that I am not a patient man, but I'm learning. What choice do I have? On my walk today I was lamenting how it seems my treatment activation is delayed day by day. Then I thought about General Eisenhower in the days leading up to the Normandy invasion as he contemplated the magnitude of the human sacrifice that was about to be made. Maybe it's because I like history, but then I had a vision of Harry Truman deciding whether or not to drop the bomb on Hiroshima. What must it have been like for those two men sitting behind their desks as these extraordinary events unfolded around them. Soooo I can wait a few more days to begin treatment. Patience.

Again, on my walk (these are really good for me) I thought about what a great day it is or as Bruce Craddock would say, "It's great to be a Leatherneck!" I am, at least in my own mind, the Tulip King of Macomb. Every fall, I dig up my beds and replant them with literally hundreds of fresh tulip bulbs. In the spring, I get my reward as our yard is a blaze with Holland's finest. The attached photo is from this year's crop and taken only yesterday by Diane. There is something renewing about spring, flowers in bloom, yards turning green, and leaves returning to trees after a long winter. For me, I get to share my situation with the rebirth that comes with spring as opposed to facing this during the gloomy months of winter. Tulips!

Today it's off to see a surgeon who will discuss the newest addition to my body: the feeding tube!

The Mask, The Road, The House

A quick disclaimer here--I heard that someone thought that the blog is too sad to read. I must tell you that my external demeanor remains upbeat, after all I am the guy who closes every speech with the words, "Everyday above ground is a good day." Putting my thoughts on this blog and sharing them is kathartic for both Diane and me and both helpful and informative to readers. My purpose is that this be more like a documentary. I know in my heart that this journey is really going to suck, but I'm totally convinced that the outcome will be a spectacular version of Gordy Taylor albeit a bit more reflective and sensitive.

The attached photo is not me but it is precisely what I was fitted with yesterday. The mask is a combination of hockey goalie/Hannibal Lector. It covers my face and shoulders almost but not quite to the point of discomfort.

Real life returned to our world yesterday. Sometimes things happen to make you realize life is really one thing after another. As we were returning to Macomb on the rural highways of west-central Illinois, we passed through the point of no return in the town of LaHarpe, Diane got a call from Sheila at the Cancer Care Center. "Can you come back--one of our procedures was inconclusive." So U-turn it was and 35 minutes later we were back to Burlington. The staff was very apologetic and even here we have some humor a the nurses said, "your shoulders are broader than we thought and the imaging material did not descend enough." There I was standing there in my shorts with no shirt--now get this visual--my shoulders are too broad which of course I brought to their immediate attention. We all had a raucous laugh and they got back to business.

We returned to Macomb and our home which could have been a real Nagasaki. From time to time when Diane goes down our basement steps to the family room, she insists that she smells natural gas, but then it goes away. She's even told the furnace people. On Sunday, friends Jill and Steve Bainter visited and when walking into our house, they mentioned "we smell gas." It turns out we have not one not two but three minor gas leaks at different locations around our house part of which is due to the house settling after 27 years. Only the gas company guys could have found these tiny leaks as they are indeed very small and the problem has been addressed. Think about it--wouldn't it have been something had we returned to Macomb to find our house gone. Luckily the contractor and workers were here and the kitchen renovation proceeds. Diane told me it wasn't an easy day for her.

Yesterday I had a banana and juice for breakfast; chicken noodle soup, grilled cheese and french fries (in LaHarpe at a local diner); had an ice cream bar and fruit stick for dinner plus 3 cans of Ensure--the food battle continues.

The Banana

When you get a chance, peel a banana and look at it. I start my day with a banana, and I actually look at it realizing it will take me 20 minutes to get it down. I am absolutely flabbergasted at how rapidly I deteriorated in terms of "regular" caloric intake. I tried a pot pie last night and got through maybe half of it. I could eat the vegetables but not the meat or crust. Eating is such a normal part of our everyday activities that it is almost impossible to comprehend going from liking everything to really liking nothing and finding ingestion of all most anything difficult at best. The PEG feeding tube sounds like a good idea, and I haven't even gotten close to starting treatment yet.

What I find so troubling is that all of this is so "un-Gordy Taylor like." While I'm married to a gourmet cook, I like dining out also as it is both a culinary and social experience. Now, if you see me on the street, I will still be upbeat and positive but within the confines of 35 Indian Trail battle lines are being drawn as I need to find a way to get the necessary calories and protein to fight this disease. Please don't be angry with me as I lament this part of "the process" but my intent is to be honest concerning what I am experiencing. I'm sure "eating" is just one of the many adjustments I'll have to make in the months ahead--believe it or not, I am down to one Diet Coke a day and my favorite food is now a chocolate soda.

There's also plenty of good news to report. While taking my daily walk around town, I was surprised when Diane drove by as she said she would be home dusting--oh yes, the Nagasaki Kitchen is still in process but making progress--lots of dust all over the house. As I talked to Diane, I looked over my shoulder and there was RYAN walking towards me. He didn't tell either of us but he had taken the morning train from Chicago to Macomb and walked to our house. Since I'm a creature of habit (I know you are amazed), Diane was able to intercept me on my route. What a pleasant surprise. Ryan and I continued walking around the square and took in a couple of innings of WIU baseball. It was a beautiful day, and we had a wonderful time.

At 6 p.m. I got a bit of a wake-up call as Diane and Ryan had a glass of wine on the deck and then went to the Red Ox for dinner while I battled the pot pie and watched Judgement at Nuremberg--a real pick me up.

Today is another beautiful day. Ryan and I will mow the lawn prior to his return to Chicago on the train this evening.

Tomorrow is CT-scan and mask fitting time at Burlington in preparation for my treatment. I left out a rather signficant piece of information concerning my visit to the doctors April 9th. My treatment consists of 7 weeks of radiation--5 days a week with a 3-hour chemo treatment added in weekly. I will lose some hair but we don't know how much.

Aw Shucks.....

The news wasn't bad, but it wasn't good either. We met doctors from 9 to noon. The oncologist suggested a regimen of radiation only until he felt the lump on the left side of my neck at which time he sort of stepped back and said, "PET scans don't show everything and your scan is a month old so I think you need a chemo cocktail in addition to radiation." We had hoped the lump was simply a swollen gland but it appears this is not the case. However the news is not all bad. Yes, the lump is a lymph node that is probably cancerous but this is NOT and I repeat NOT unusual for cancer in the head and neck areas. Dr. El-Khoury who I believe is 12 years old and his upbeat nurse Vicki were blunt and to the point. They looked at my finely tuned body and said that I had no weight to lose and therefore without question I should have a feeding tube called a PEG. I might not need it for the first couple of weeks but after that it would be a necessity and extremely painful to insert at that time because it goes down my throat. It took me about 2 seconds to lose that argument as I hoped not to have one but it is clear I will need one.

After our consultation, Vicki gave Diane and me a tour of the chemotherapy room. How delightful. I'm told I can listen to music, watch tv, bring a laptop, eat, sleep, or whatever during my weekly 3 hour plus chemo treatment while lounging in a lazy boy. They also provide warming blankets since they keep the room rather cool. I don't have to have a port for the chemo but will have an IV in my hand.

Next stop was Dr. Bill McGinnis. The Great River Medical Center's (GRMC) Cancer Care facility is affiliated with the University of Iowa--a well-respected medical facility. Dr. McGinnis has a great bedside manner but during our one-hour conversation, he made it clear that of all the types of cancer he works with, this variety is the worst in terms of pain and discomfort. He said the first two weeks will be tolerable followed by 5 weeks of hell. At some point, I literally will not be able to swallow and that is where PEG becomes invaluable as I need to have calories and protein to fight the cancer, maintain my body weight, and stave off infection. He was very clear that this will be an awful time followed by a rather slow recovery BUT he assures me I will survive.

On Monday, I will go back to GRMC and get fitted for my famous mask which will go over my face and shoulders and be bolted to a table where the radiation is applied. It looks like a hockey mask with small holes. Claustophobia anyone? Thank goodness I don't have it. Also, another CT-scan is required because they need to know exactly where the tumor is located.

Among my responsibilities next week is to get the PEG inserted so that I can be ready to accept sustenance in that manner. Did you know that you can get vicadon in liquid form? I'm told this will help me and Diane is ready to insert whatever I need. In addition, Diane will prepare me a mouthwash comprised of salt, baking soda, and water. My 50-year marriage to Listerine is over for now as it contains alcohol which would burn the crap out of my mouth during treatment.

It takes at least 7 to 10 working days to set up all of this after the CT-scan so my earliest start date is April 21st by which time I will be a raving madman. No, no, I'm the motivation guy so patience is now a virtue I embrace. If anyone believes that, you are reading the wrong blog but life is what it is so we shall move forward accordingly.

I must admit as we walked out of the office at 12:01 p.m., I wanted (1) to throw up or (2) to have a stiff drink or (3) to cry. Instead, we opted for a homemade soup supreme lunch prepared by Gretchen Miller at the David and Gretchen Miller home in West Burlington. I must tell you my dad was right--the most important things in life are not things at all but rather the people we meet on life's journey who enrich us, support us, challenge us, and nurture us. Boy, am I finding that out first hand.

One last comment--my new life gives me time to do things I haven't done before. For the last couple of weeks, I have found myself at WIU softball games with Jim Miner and baseball games with Mike and Susan Pendergast. It's fun to shoot the breeze and take in a ball game. You learn to savour the little things in life.

Next step: Monday and the mask!!

Surreal or the New Normal

I took a walk this morning and sort of reflected on what has been happening. None of this seems very logical to me. After all, I brush, floss, gargle, and water pik, have never smoked, work out almost every day, and generally keep my weight in check. I take a regimen of vitamins as prescribed by Dr. Diane and generally drink only a couple of Diet Cokes a day. This whole situation just seems inconsistent in the world in which I've lived. But then I realize that life is not always logical or fair which I assume explains the good fortune I've experienced for most of my life. I can take it a step further when I think of my good friend and neighbor Darrell Dykstra who didn't smoke, drink, exercised daily, never had a foul word for anyone and certainly didn't pee in alleys--on the last two items I must admit Darrell was better than me--and the poor guy died from cancer 3 years after an almost 10 year battle. It always struct me that if someone as wonderful and kind as Darrell could become afflicted, it could happen to anybody. Damn, I hate to be so prophetic.

Had a little set back a couple of days ago. I went to the dentist to get his clearance before my fun radiation/chemo regimen begins and while he found no cavities, he did find a lump on the left side of my neck. I immediately assumed I was dead. A quick trip to Burlington resulted in a antibiotic prescription to treat what my ENT doc said was a minor infection--don't worry about it.

Wednesday former alumni council member Sue Seaver Goetz from the Quad Cities stopped by and said, "Gordy Taylor, how's the new normal?" I looked at her and realized she hit the nail on the head. Normal as I know it has probably changed forever in ways I cannot even conceive. For a guy who NEVER, and I mean never, takes naps except for strategically timed ones with Diane (please don't make me explain), I now can nod off in an instant. So the new normal will evolve daily. Yesterday former student and long time friend, Frank Costanza, stopped by from Kansas City. Frank was a great baseball player at Valporaiso but by his own admission couldn't hit the curve ball. Frank could throw the ball farther and harder than anyone I've ever seen. When we played softball for Baymillers, we would have contests throwing the ball from center field to homeplate. My arm was not as strong but the ball ultimately reached the catcher. Frank's throw arrived much earlier but usually flew over the backstop into the next diamond. As we sat up last night solving the world's problems and me realizing how important real friends are at a time like this, Frank said, "You know, Gord, very few people are fortunte enough to have the ideal job which they love and which they excel at. You are ones of those people." Frank is right.

Nephew Neil, his wife Michelle, and son Jack stopped by today on their way home to Wisconsin from a trip to Colorado. A 3 year old has lots of energy and I realize life is a never ending circle.

Tomorrow is the big day. We leave for Burlington at 7:30 a.m. and have been told to plan on spending the day. It appears treatment will not begin April 12th--maybe the 19th. Let's hope. I will be a basket case by then, but I'm told it generally takes 2 months from diagnosis to the beginning of treatment and I was diagnosed March 4th.

My next entry should reveal the course my life will take for the next year or so. And so it goes......

Ground Hog Day/Hurry Up and Wait

I feel like Bill Murray in the film Ground Hog Day. While I vary my daily routine with walks, working in the yard, going to movies, and harrassing the poor guys who are remodeling our kitchen (what I call Nagasaki East), there are certain similarities every day. I get up with my ears ringing and hurting, take a couple of Tylenol, eat my banana, take my vitamins, drink some juice and, of course, start all this with the ever present Diet Coke. I then begin my day. At lunch the downward slide begins. It gets harder to swallow as the day progresses, but I force myself to eat something and that seldom includes beef which has been my staple my entire life. Hey, I was raised by Connie and Doc Taylor and they believed the road to good health was paved with a good steak, baked potato, salad, and a healthy mix of martinis. The latter went by the wayside for me the day I buried my dad, 1988. I still have one but on rare occasions.

My next meal is comprised of a can of Ensure, followed by either a Dairy Queen soda, or a malt from the soda fountain/counter at Ford Hopkins Pharmacy on the square. Dinner is a bit tougher as I tend to "run out of gas" by 6ish and am pretty much place bound at night. That is by choice as my days remain active. My two new restaurants are "carry out" from County Market and the Jackson Street Pub. I am sure this will expand to include Vitale's and the Red Ox. I am indeed fortunate that I like soup and always have.

By 9 p.m., it's 5 minutes of WGN, a couple of Tylenol PMs, and then off to bed. I wake up with a headache at about 2 a.m., take a couple of regular Tylenol, and then manage to fall back asleep. I am not complaining as this is just the way it is for now. The redundancy/repetition is a bit maddening for someone who loves to eat and now eats to live. Another candid admission: wine consumption is waaaay down.

April 9th seems like a year away. Every appointment with a doctor seems to result in another appointment with another doctor but that should end Friday when we meet with the radiologist and oncologist and outline a plan of action. Hooray!!

Many thanks for your cards, calls, emails, and personal visits. They have given me another sort of wake-up call I never expected. All the communications have similar theme: "hey big guy, you've been giving that motivational speech for 40 years, and now it's time to walk the talk, and live it!" I guess I never thought about it much but that is simple, to the point, and helpful. I seem to have spent my entire life encouraging others to view the glass as half full and now it's my turn. My most explicit reality with this are my trips to MidAmerica National Bank--it's sort of my tonic. I walk in and feel like Norm on Cheers--a hello here or a hi there, everyone has been very friendly to the Taylors over the years and the employees always kid me about how happy I seem to be and I am. Time for the NCAA. My heart is with Butler but Gordon and Ryan say the smart money is with Duke. We shall know soon.

"Do you like your dad?"

Well, everything else aside, this is a monumental day in my life for on April 1, 1967, I met Diane Paulsen on a blind date at Argyle State Park. Little did I know this would be the seminal event in my life as we have been married 41 plus years, have 3 wonderful children, a terrific son-in-law, beautiful daughter-in-law, two insightful grandsons who refer to me as Mr. Fun or the King!! Stop laughing. We've had our ups and downs but way more of the former and very few of the latter.

If you're reading this for a daily feel-good story, you will be disappointed as my purpose is to help other people understand what this experience is like if they are faced with a similar situation so that their "bump in the road" can be less mysterious than mine. Of course, I do need to remind myself (actually I don't) that my doctors have told me the survival rate for this is 75 to 80% so that is very good news.

Tuesday was a full day as we drove to Zion, IL, to see Diane's parents who are in assisted living and a nursing home. I did cross another threshhold as after Grandma bought us lunch (yes, she is a sweetheart), I announced that I needed to take a nap. Mind you this is my first real nap in 60 years but darn it, I was tired. Obviously this little journey is tiring both physically and mentally. Went to bed Tuesday night at 9 but got up at 10 with a headache, sore throat--DUH, and my ears ringing. I was angry as nothing stops me from getting a good night's sleep. Of course, I'm not the brightest bulb in the pack as I went back to bed at midnight and left for Macomb at 4:30 a.m. to avoid that Chicago traffic.

I forgot to mention this the other day but during my phone conversation with ENT Dr. Henrich in Iowa, when he talked about the exceptional experience of Dr. McGinnis, the radiologist, he said, "I would send my dad to Dr. McGinnis!" I responded immediately, "do you like your dad?" We both had a good laugh.

Also I got a funny email from University of Florida retired alumni director, Wayne McDaniel, who wrote "I can't believe you've been diagnosed with cancer, especially on your tongue since it is seldom still enough to catch anything." Stop laughing again!!!! It sure made Diane and I laugh.

I'm off to interview WIU President Alvin Goldfarb on "Across the Miles." He talks as much as and faster than I do.

My newest challenge is to figure out what medications to take to mitigate the pain without becoming a drug addict. Anything classified as a narcotic causes constipation and I'm now an expert on that subject--stool softeners anyone?

It is 80 degrees and sunny in Macomb. As Coach Bruce Craddock used to say, "It's a great day to be a Leatherneck!"