Progress and Moms

Constance Pranger Taylor, 19 years old

November 17, 1940--Wedding Photo

I continue to make progress on all fronts, but it is so slow. This is not like when you are sick with the flu and one day feel markedly better. Every day when I wake up, I feel basically the same as the day before. I am aware of the fact that recovery is being made in very small incremental steps. It has been 8 months since a sore throat and all that has transpired since. Suffice it to say, this has been the longest year of my life. So much has happened to me personally and to those I care about the most. I just never imagined I would ever get something like cancer and all that goes with it. This is indeed a learning adventure. Diane and I are becoming knowledgeable about things we never imagined would concern us. They do now. I'm sure Michael Douglas and his family feel the same way.

While on my 7 a.m. walk today, my thoughts went to mothers. Yesterday Jennifer and Diane had a wonderful conversation. It was fun to watch Diane interact with Jen on the phone as they talked about what seemed like everything under the sun. Later in the day, Diane had a conversation with Gordon III and finally one with Ryan. It's no secret that Diane likes to talk, but she is also an extremely good listener. I feel very close to all 3 of my children, but my phone conversations with them tend to be more in the 5 minute range. In our family, and I'm sure all families are different, it is Diane with whom the kids seem to share the daily happenings in their lives. My kids know how I feel about them; I know how they feel about me. As I watch Diane interact with our kids, I realize how much I miss my mom.

I wrote about my mom in the winter 1995 edition of the Western News (Western Illinois University's alumni publication). I began my comments by writing "it had not been a very good year." The good news was that brother David was married to his college sweetheart on August 25, 1962. However, our family nightmare began the next day when the doctor called to say the results were positive--Connie Taylor had tuberculosis. Our lives were to be changed forever. David returned to classes at Western Illinois University and the rest of us struggled along in Hinsdale--my dad, brothers Douglas 11 and Greg 5 and myself 16.

When a person goes to a TB sanitarium, one stays there until recovery or death. None of us had ever experienced life without Mom. She cooked our meals, did the laundry, kept an immaculate home, nurtured us all, and did a thousand other things Moms do that none of us think much about. I was the logical choice to fill in around the house including meal preparations; we almost starved. I reluctantly became Mr. Mom as I dusted, vacuumed, changed beds, washed dishes, cleaned toilets, and attended high school. For the first time in my life, I realized all the things moms do every day for which they receive no recognition, nor do they expect any. It's just what they did in the fifties. There is a huge emptiness when Moms are not around as they are the glue that holds most families together.

Doug and Greg were not allowed to visit Mom inside the sanitarium due to the highly contagious nature of TB and the fact that they were under 16 years of age. One of my duties was to twice weekly pack up my younger siblings and drive them to a location about 50 yards from a window outside Mom's room, and then run inside and escort her to that same window so she could wave to her youngest sons. It was awful. It was the best we could do.

Mom never gave up. She told us she would get well and soon we'd all be together. Mom always had a brave smile, but I think we all knew better. Over the next year, Mom's condition did not improve. She had major surgery and lost all of one lung and part of another. We all coped as best we could but there was always an empty chair at the kitchen table. No one ever really complained. We boys just wanted our mom back and Dad his beloved Connie.

I was not exactly an imposing physical specimen as a young lad; I was skinny, had buck teeth, and plenty of pimples. You wouldn't know it if you talked to Connie Taylor. She acted like I was Tab Hunter or Troy Donahue. She was fiercely proud and protective of her four sons. We all knew this when growing up--Mom was a real looker. David and I took great pleasure when our friends would come to 27 South Bruner and inquire about our "good looking sister." It was always fun to look at their expressions when we told them she was our mom. However, TB took that away from her, and at the end, she looked like a tired Judy Garland.

Mom came home, but she died in July 1969 at age 47. I'm 64 and have long known that life isn't fair. Mom gave her entire adult life to her husband and 4 sons. She never complained, she never lamented to her sons that she had been dealt a bad hand, and she always told us to be grateful for what we had because at least we had each other. Her words take on new meaning to me these days, and her fighting spirit gives me reassurance that I can handle whatever comes my way. Thanks, Mom, I miss you.

People, People, People

Diane, Anna and Harry Paulsen, Gordy Gordy and Dad
Dad and Diane

It has been quite a week. On Monday, Diane and I took the Metra to Waukegan from Chicago where the always reliable brother-in-law Paul picked us up and squired us around as we visited Diane's parents. Grandma wanted to see me so she could determine for herself how I was doing--I believe I passed the test. We had a good visit with Diane's dad as well as he is next door in the nursing home.

On Tuesday, we had lunch with Gordon and then hopped in the car and made it to Macomb in 3 hours and 50 minutes. We were lucky that the Eisenhower was wide open. It was good to get home but no regrets about the trip and we plan on more in the near future.

This was WIU's Homecoming weekend, and it is one neither of us will soon forget. We stopped by the Leatherneck Hall of Fame dinner Friday night to offer our congratulations to the new inductees. While I walk around town and see people, it is usually a one-on-one situation but this was quite different. My energy sags a little at night but we were energized and extremely moved by the sincere concern and love people showed us. Handshakes were out; hugs were in. It is difficult to verbalize how one feels when people come up and inquire about my progress or compliment me on how I look as in many cases, I haven't seen these folks over the past few months. It is not that I'm a hermit, but my primary trips outside Indian Trail are my daily morning walks.

We ventured over to the Alumni House and the process was repeated particularly with large groups of returning Delta Sigma Phi and Tau Kappa Epsilon fraternity members. Diane was particularly struck by the scene of men in the mid-60's again forgoing handshakes and going straight to hugs. Time and again, a friend from the past would have trouble verbalizing his or her thoughts but a hug said it all and then some. I was not aware of how many blog readers there are but I am now. I have always said I had the best job at Western and know now that I was speaking the truth.

Even though I live with it on a daily basis, I sometimes forget that I have been dealing with what could turn out to be a life-threatening illness, and people are genuinely concerned about my welfare. This weekend was a powerful and positive tonic in my recovery. People were just so darn nice. After the parade and football game on Saturday, we made a brief stop at the Delta Sigma Phi's 60th anniversary social and dinner. Diane and I were unprepared when Chapter Alumni Corporation Board President Ed Noel introduced us prior to our departure. We stood there in awe speechless as our eyes looked around the room at so many young men who I had had the pleasure of mentoring as fraternity advisor for 25 years. The standing ovation of 130 attendees was almost too much emotionally for us. I went to the podium, mumbled a few words of thanks, and we were out the door. It had been quite a weekend for the Taylors.

I have returned to my one-hour interview program Across the Miles on University Television. Alumni Director Amy Spelman was kind enough to be my first guest as I needed someone with whom I had a long history so that I didn't have to struggle with words. It went well. In her quarterly column in the Western News, Amy mentions my health situation and provides the blog address. Thanks, Amy!

We had a mini Big Chill weekend as well with house guests and dear friends Fred and Pam Hoffman and Steve McLaughlin. All three have been presidents of the WIU Alumni Association. While everyone went their separate ways during the day, we would rendezvous at our home at night. Oh the laughter. My only regret is that I would retire early due to my lack of energy. From my bedroom, I could hear the laughter continue and that in itself was wonderful. The past few months have not provided as much laughter as we are used to. It was a reminder of how important people, humor, and laughter can be.

Many thanks to everyone who has reached out to us. Mere words are inadequate to express our gratitude.

Chicago, Greg, Oops!

Greg and Gordy

We did it! We left Macomb. Other than West Burlington, I had spent every night since March 31st at 35 Indian Trail. Diane and I hemmed and hawed for weeks before committing to this adventure. I had missed weddings, Cubs games, and other activities but just felt it was time to stretch my comfort zone. I write this from Chicago which means I'm still alive. I have been taking long walks and Friday went from the Sears Tower to the River North area. Also, took a walk with son Gordon from Navy Pier to Lincoln Park and back. Chicago is a marvelous city.

We drove up Wednesday and stopped in Hinsdale to have lunch with brother Greg who has also had some health issues and is recovering nicely. I usually shake hands when I see Greg but not this time. We stood in the Grant Square parking lot and gave each other a big bear hug. It was one of those moments. I think it meant a lot to both of us. Greg is 11 years my junior and I'm proud of the man he has become.

I am having a great time except for the "dining thing." As we visit with family and friends, we end up as we always have at nice restaurants. I have always been able to eat, drink, and converse freely but no more. This may not seem like much, but it is to me. We enter a restaurant, are seated, and then it begins. Everyone is having a fine time dining on excellent Chicago cuisine while I at best suffer through ANOTHER bowl of soup. I also pirate a little food away from everyone else. It's not pretty but it expands my food intake, and people are pretty tolerant as no one knows where my fork will go.

Now for the oops part! We were having a relaxing dinner at the Sofitel Hotel with Gordon and his lovely wife Lisa. I don't know how it happened, but I got a small bite of food stuck in my throat. This has happened before, and a big gulp of water moves the food down my throat. That didn't work so well this time. I got up from the table and walked across the restaurant through the lobby of the hotel attempting to dislodge my problem. For the first time, it didn't work. I just couldn't breathe. I'm sure I was quite a sight as in my attempt to clear my throat I had food coming out my nose and my mouth into a fine Sofitel linen napkin. I was starting to really panic when it was over. Just like that! The problem went away. This was the first time since I've started eating that I got scared--really scared. I need to concentrate on the business at hand in terms of eating. This continues along with my lack of the old Gordy energy to be the toughest part of my recovery.

I'm glad we came to Chicago. It has been a wonderful tonic and soon I will be watching the Bears play Dallas with Diane, Gordon, and Ryan in a comfortable condo. It will be like old times. After a trip to Zion tomorrow to see Diane's parents, our current plan is to return to Macomb late Tuesday. After all, Homecoming is just around the corner.

Frequently Asked Questions (FAQs)

We've had lots of wonderful support the last 6 months and along with that a number of questions have seemed to crop up on a semi-regular basis. Here it goes:

1. How did you know something was wrong?

While in Florida, I developed a sore throat that simply didn't go away. I remember mentioning it to Frank and Mary Stanley when we saw them in Memphis, Bill and Pam O'Toole in the Orlando area, and Tony and Kathy Esposito when we stayed with them in the Tampa area. No fever, no real pain, just a sore throat and ear ache that I couldn't shake. I went to a GP in Fort Myers Beach and after antibiotics and ear drops did not improve the situation, he referred me to an Ear, Nose, and Throat specialist in Cape Coral. On March 2nd, Dr. Lozano pulled out my tongue, put his fingers half way down to my stomach (or so it seemed), scoped my throat with a tube. He said, "you have a mass at the back of your tongue and now you need a biopsy as an outpatient." Two days later I went to the hospital.

2. Why did you go to the Cancer Care Center in West Burlington, IA, instead of Northwestern Memorial Hospital?

This was a difficult decision but in the end, sleeping in my own bed every night was a major factor and turned out to be a good idea. Dr. Pelzer at Northwestern also concurred with the diagnosis with the other 2 ENT specialists we saw. He said that as long as the radiation oncologist is experienced in head and neck cancers, you are fine to stay close to home.

3. Did Diane get tired of the drive?

Here's Diane's response: No, not really. At the beginning, Gordy even drove himself to just the radiation treatments. I always went with him on Wednesdays which were doctor appointment days and Fridays were all day chemo times. I wasn't stuck in traffic, no one-lane construction projects, and it was only one hour over and then back. There was something peaceful about farmers planting their corn and Gordy and I getting to watch it grow. Now I'm an expert in 4 different routes and in some ways, it was calming. It became a part of our routine.

4. Were you ever scared?

Of course I was and a part of me still is. As was said previously in the blog, being confronted with the "c" word really gets one's attention. I was particularly concerned the night when I couldn't get my head out of the toilet and sat there in the bathroom honestly wondering if I was going to die that evening. I also a little scared during my hospital stay.

5. What's been the toughest?

Losing control of my life as I knew it and as Sue Sever Goetz said, "adjusting to my new normal." Not feeling 100% when I've always been healthy as been a major adjustment.

6. Who do you talk to about this illness?

Other than my doctors and Diane, my go to people have been Don and Lisa Patterson, Maury and Sandi Coats, and Phyllis Walters. These folks have walked in our shoes and consequently, while it has not been fun, there have been no real surprises.

7. How do you feel?

I get stronger every day, but the progress is maddeningly slow, and there's nothing I can do about it. I become less dependent on product with each passing month. I still need PEG which impedes my ability to have autonomy in my life. All in all I feel pretty good and am able to take an hour walk every day.

8. What frustrates you the most?

The whole "c" situation is very frustrating, but it could be much, much worse. Waiting to improve has been a challenge. As I venture into the world of food consumption again, it is extremely challenging to eat. The reason is simple, with every bite of food I need a large gulp of water--try it sometime. Secondly, everything taste like cardboard. Digest that one for a while--pun intended. This should improve over time but I will never have all salivary glands or taste buds again.

9. Was there really a time when you couldn't talk?

Yes, pretty much so for about 3 weeks, I whispered at best and restricted my conversations to Diane and the kids.

10. How has this affected your kids and Diane?

I believe my kids thought I would go on forever and they always kid me about being the energizer bunny "Go Go Gordy." Those days are over and my children have seen their father in a diminished capacity for the first time in their lives. Clearly they are now aware how precious life is and that mortality is inevitable. Each of them has been supportive in their own way, but I know that when I weighed 153 pounds, they were very worried. As for Diane, she has had to assume roles she never needed to assume before with me. She fed me product, gave me medications, drove me everywhere, consoled me, comforted me, and did whatever it took to get her previously healthy husband back on his feet. She also got a reminder of all the things her spouse did to help out, and that's fine. However, if the shoe were on the other foot, we would both starve to death.

11. Do you look at the world differently?

Absolutely. Life is precious. I take nothing for granted.

12. When do you get rid of the feeding tube (PEG)?

I believe it could be soon except for that 800 pound gorilla that will be with us until Thanksgiving when I have my next PET scan. If the two hot spots do not disappear and are cause for concern, heaven forbid I would need PEG if I were to have surgery or additional radiation. I really don't feel this is going to happen, but I need to check with the doctors prior to making a decision about removing PEG.

13. What's in your future?

For the first time in our lives, the planners and organizers called Gordy and Diane are unable to plan. Our plan is no plan. I am constantly reminded that after radiation and chemo, it takes a year before people return to any semblance of normal. I am told that in a rather perverse manner is that radiation is the gift that keeps on giving in terms of after effects. I am at the six-month mark from diagnosis so here's that famous word again: PATIENCE. There really is not much we can plan on until the next PET scan. If the hot spots are gone, we hope to take a trip or two. If they are not, then we will do what we have always done which is to confront whatever comes are way.

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.