The Personal Touch

Yesterday was an okay day. After radiation, I drank a couple of Ensures which I promptly threw up in Macomb. This will take some adjusting to but I did manage to take in 8 cans of Flexsource HN through PEG. The staff is a little concerned as my weight is already down to 172.5. I hope it is a little higher today.

Tuesday morning, while in bed at the Millers' home, a very nice lady crawled in bed with me. We generally sleep in the same bed but we move back and forth for the sake of sanity and at least some sleep on Diane's part. This was very special. We sort of laid there on our sides, not talking, but just being there for one another. She wrapped her arms around me as if to try and comfort both of us. It was all very subtle but I realized then how important the human touch can be and how valuable it is to know that someone cares, really cares. This little embrace didn't go anywhere but that's okay. A new lesson for Gordy Taylor--you don't have to have sex to experience love between a man and a woman. Let's be fair, I've known this for quite some time but this was great on the site training for me.

Yesterday I told Diane I was going to mow the lawn. I have a mower I push, not self-propelled or a riding one, and I need to catch my grass. I then decided maybe that wasn't such a good idea but rather have a neighbor boy use my mower and catch the grass. Then I decided maybe I would get someone to mow the lawn. To hell with bagging! I then decided to take a walk but after I put on my tennis shoes I decided to cut the tops off tulips and pick up sticks instead. This lasted for one half hour and then I had had enough. Oh well, I will have a nice yard next year. Diane was proud of me as I did wear my Marlon Brando Godfather in the garden wide-brimmed hat. I scared a couple of neighborhood children but then I'm pretty scary these days. I'm learning I have cancer and have to surrender to the treatment.

We are off to Burlington for radiation and our weekly visit with Dr. McGinnis.

Oh My God!

I have not been here for 3 days for a very good reason: I am so sick. Unfortunately for Marty Green, Chad Allaman, and Roger and Judy Miller who visited over the weekend, they saw the "new normal" for Gordy and it is so not pretty.

Arrived at CCC at 9 a.m. after driving over in a torrential rain storm. First stop was the chemo room--brought a healing shawl/blanket and current issue of Newsweek and some snacks such as pudding. During the two-hour IV hydration which includes potassium, a steriod-type liquid, and saline solution, they managed to squeeze a radiation treatment. The actual chemo lasted from 12:45 to 3:45 and was a breeze. I just sat there and relaxed. Not many people get chemo on Fridays. Diane actually sat in the Lazy Boy next to me and managed to dose off a bit. I felt great on the way home. Once in Macomb, we stopped at the Dairy Queen for a blizzard.

Chemo is very sneaky and debilating. At 8 p.m., up came the blizzard in a single lump followed by unrelenting nausea. Folks I've never had nausea, hell I've never been sick, but I am now. All I could do Saturday and Sunday was lie in bed and sleep. I am supposed to take 9 cans a day of Fibersource but I had 2 cans Saturday and 3 cans Sunday. This is NOT good, and I must visit with the doctor about this situation. I am also taking two types of anti-nausea medicine which don't seem to help much but I don't know what it would be like with them.

Coach P visited Saturday and that was the highlight of the day. Gosh, he looks terrific and gives me hope and inspiration. He helped Diane and me set up my feeding apparatus which is an IV gravity bag that hangs from a poll-like metal stand on wheels. I have never felt this bad in my life and it continues day after day and it is only just beginning. Sometimes I just wish I could go to sleep and not wake up but I know this is not an option. I need to prove to myself that I can beat this thing. It's almost like my postings up until now have had a Disney-like tone. "Oh my this is bad but it will get better. Isn't life grand?" My guess is the real odyssey is just beginning. Hope I'm up to it.

When all this started, I was told by many of you that Diane would be my rock, my inspiration, my nurse, my friend, and my caretaker. I wasn't sure what that meant but I sure know now. There is NO way I could survive this without her by my side. It has to be terrible to be a spouse and witness all this happening to someone with whom you've spent your entire adult life. Thank you Diane. I love you.

It's important for Diane to experience some normalcy in our tumultous world. On Saturday she had fun at a bridal shower, went out for a delicious dinner at the Red Ox with Marty, and enjoyed organizing her new kitchen. Judy and Roger Miller drove from Burr Ridge for a visit and brought some tasty food from Charlie Trotter's carry out menu. Diane needs to remember to eat properly and take care of herself so she can continue to take care of me!

It is 9 a.m. and I'm finishing my 2nd can of "food." Hooray for me! We have radiation at 3 p.m. today and 9:30 the rest of the week so we'll probably stay tonight with friends David and Gretchen Miller in West Burlington. Sorry this isn't more upbeat but I'm just trying to be honest. Consider yourselves lucky--I suggested to Diane she take a photo of me this morning and post it. And she said, "no way."

The Battle Has Begun!

The above photos show my new friend PEG and me. If this visual is too graphic, don't look at it but it is what it is. Just a FYI: definition of PEG--A percutaneous endoscopic gastrostomy tube (PEG tube) is generally placed into a patient's stomach as a means of feeding them when they are unable to eat. Now you can see why it is called PEG. The result of the PEG insertion has been considerable pain, much worse than I had anticipated. It is very difficult getting in and out of bed due to the intrusion into one's stomach muscles. However, today is Friday and I feel much improvement.

Yesterday was a BIG day. Diane and I were working on flushing out my PEG tube when the Cancer Care Center (CCC) staff called to say they wanted to meet with us and possibly begin radiation. There was some concern that the tumor was beginning to obstruct my breathing and, therefore, delay the start of treatment. We were scared. But after a brief visit, the decision was made to begin radiation immediatly, so I had my first treatment at 1 p.m. yesterday--the battle begins. As they bolted me to the table, I listened to Aaron Copland's "Fanfare for the Common Man" and "Appalachian Spring"--a CD I brought from home. This first session lasted 45 minutes. And folks, it is not fun as I can't move my head at all. It is so tight that when I come out my face looks like waffle iron. They cut a piece out of the mask over my right eyebrow as it was actually restricting blood flow. Hey, one down, 34 to go!!!

Next stop was oncology. I will have chemo on Fridays after radiation. I will always begin with 2 hours of liquids including a mild steroid and anti-nausea medicine via IV. Then I'll have 3 hours of Cisplatin--the chemo cocktail of choice for my treatment. Side effects were discussed. Then Diane and I toured the chemo room which looks like a Lazy Boy sales room. Can you imagine me sitting in a chair for 5 hours? Not actually, as I am allowed to walk around the room if I take my "cocktail" with me. Every Thursday, including yesterday, I will have blood drawn to make sure my white and red cells and hemoglobin are at the appropriate levels.


The next stop was visiting a nutrionist. Maybe it was just the length of the day, but to sit there and hear that I will be ingesting 9 cans of product per day through PEG was tough. This just seems overwhelming. But absolutely the right decision to have PEG because within the next couple of weeks, I will not be able to eat at all. Currently I eat very little and get my nutrition in calories through Ensure Plus and Boost. The ride home was tough due to informational overload and as usual my ear prevented me from getting any good sleep last night. Hooray for Diane as she managed to sleep pretty well which she hasn't been able to do the last week or so.


A quick bit of information. When all of this began, I had very minimal ear pain. But I did have some so put that down as a cautionary sign as the ear pain is referral to the cancer as it affects the nerve to my ear. Just something to keep in mind: persistent and unexplained pain means something.

It's 7 a.m. and time to head out to Burlington for a new part of this odyssey. We'll be on the road quite a bit and if you'd like to reach us, Diane's cell is 309.313.2106 and home is 309.836.9481.

Good God, Gordy Taylor is having chemo today!!! I'll be listening to "West Side Story."

The Good, The Bad, and The Ugly

The Good
The photo to the left is the best looking version of Gordy Taylor that I'm told will be seen for at least the next 12 months. The man before you is a sinewy 178 pounds. The photo was taken after my Across the Miles interview done yesterday with Don Tomnitz, Vice-Chairman, President, and CEO of D. R. Horton the largest homebuilder in the United States. I had Don in class in the mid 1970s and obviously he has had a stellar career. At lunch yesterday, he brought a tear to my eye when he said, "every school needs a guy like Gordy Taylor who can connect alumni with their alma mater." It was show number 150 and at the end I got a little choked up when I told the audience we would be going on hiatus while I take on my new assignment. Diane and I had a wonderful visit with Don and his lovely wife Sharon.

The Bad
Last night I was laying in bed and felt a gurgling in my throat so I got up to blow my nose and the Kleenex was full of blood. I got a little panicky but it was a singular event, and I went back to bed. This morning we were at the hospital at 7:30 and I must admit I became a bit melancholy. As I took off my clothes and put on my blue dressing gown (Diane mentioned it matched my eyes nicely), I looked at my stomach and it was sort of sad. While I do not possess 6-pack abs, I have had a relatively flat stomach my entire life and I suppose if I have any physical attributes, that is one of them. Soon I would have a tube sticking out of my stomach. While that is a bummer, it is going to be my source of nutrients for the foreseeable future so screw vanity! I've had surgery before (foot, knee, shoulder) but this time I was a little more apprehensive as they were going down through my throat in order to stick a tube out of my stomach. There was a little humor in all of this. We do live in a small town and as the nurse wheeled me to recovery, she said, "do you know everyone in this hospital?" I think I smiled and said, "Oh, I'm just old."

The Ugly
This is simple: my new friend--THE TUBE "dear old PEG." I am not to shower for 48 hours and bubble baths are out. But if Diane is game, I will post a photo of the PEG in a couple of days after I'm allowed to remove the dressings. Still no word on when radiation/chemo begins but gosh, I hope it's soon.

A Long Day's Journey Into Night?

I never read much Eugene O'Neill, but for the last couple of days, the theme of this play resonates with me. I'm working on my patience, but I just want to start my treatment!! The left side of my throat is always sore and I feel like this damn thing is growing. Now remember, this is my blog so I intend to be honest. Eating anything is a chore, and I chew extensively followed by an immediate gulp of water or ice tea in order to "get it down." This is not pretty or tasteful but it is functional. Mornings used to be a good time but now they seem to be just a precursor to what the rest of the day has in store.

Since I'm doing this, I might as well lay it all out there. I get up in the morning and take a couple of low-grade pain pills and three stool softeners. As the day evolves, I find occasion to take 3 vicoden between 11 a.m. and 7 p.m. Just prior to bedtime I take a couple of Tylenol PM. I awake between 2:30 and 3:30 a.m. and take two regular Tylenol and generally I am able to sleep until 6:30 or so. Please don't write to me about Tylenol overdose as I have cleared my intake with the doctors. Once treatment starts, I'm told the ear pain dissipates and at that time, I hope to eliminate the pain pills. Not feeling 100% is a challenge for someone who always feels 110% but by evening, both my mouth (no comments please) and body are tired.

Our days remain busy. Yesterday we had visits from an old Theta Xi, some even older Delta Sigs, and a trio of Phi Sigs which is scary in of itself. We sat in the drive way, and I watched them drink beer while I treated myself to 50 cans of Ensure. We shared hearty laughs and told the same old stories we'd told for years. It was great fun. All three of these visits were spontaneous and often times what is unplanned turns out to be the best.

Today we went to church, took a walk, and will mow the lawn. See, we do keep busy and life goes on but having this "thing" on one's agenda is a bit of a mental burden for us. I will share a quick visual with you: I've always brushed, flossed, water pic'ed, and gargled. I don't even have to look but I'm sure the visual/sound performance I give when I gargle these days is an event Diane needs to be spared. I go in the bathroom, close the door, turn on the fan, and then I make these horrible noises as I attempt to get mouth wash down the side of my throat to the effected area to deaden the pain. I assume I make the sound of a wounded Yeti. In addition to the noise I make, mouthwash spills everywhere as my throat is apparently clogged in part by the tumor and the mouthwash has no where to go. It is a rather odd new battle and certainly one of those indignities of my "new normal."

Finally, bear with me. I've said it before and I'll say it again, this journey is not going to be much fun but it will end and I will be cured. As movie star Bette Davis said in All About Eve, "Fasten your seat belts, it's going to be a bumpy ride."

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.