Quite a Year

We're back. Diane and I left Corpus Christi Sunday morning and after stops in Baton Rouge, LA; Memphis, TN; and Gillespie, IL, we arrived in Macomb Tuesday afternoon. Diane had not been home since May 27th, and we put 3300 miles on the car. It was a splendid trip. I much enjoyed my time with grandsons Luke and James plus newcomer Paul. While they wore me out, it is good wearing out.

After dinner on Fathers' Day in Baton Rouge, Diane presented me with a card and it really resonated. We tend to be note writers on our cards and this one hit home. Fathers' Day 2010 according to Diane found me at my weakest. I had just completed treatment on June 10th and was still in a downward spiral. Gordon and Ryan made it home that weekend, and I'm told they were quite concerned as I was down to 153 pounds and had no energy. I don't remember this but then I don't remember much of what happened on a daily basis during this period.

Now it is a year later and oh how things have changed. In her card, Diane posed a series of rhetorical questions: Who would have thought Gordon and Lisa would be in Austin, TX, because he got a big promotion? Who would have thought the Stevensons would have another baby? Who would have thought you (Gordy) would receive Western's Distinguished Alumni Award and the renaming of the James Grigsby Student Leadership Award to the Gordon A. Taylor Student Leadership Award?

None of these were on our radar. Add to this the wealth of good health news I have received lately, and it has been one heck of a year. I still itch but it is much better. In the last couple of weeks, I have noticed an improvement in both my ability to taste and an increase in appetite. My taste buds are certainly not what they were before all this happened but they are coming back!! As far as eating, for the first time in 16 months, I occasionally order an entree and not just soup and salad when dining out. Folks, in my world, this is BIG news. I also find myself able to get through the night with only a couple of sips of water because my mouth is so dry. I do remember waking up every half hour every night because my salivary glands were not working. Ahhhh progress.

I mentioned this in my last posting, but it bears repeating. I've talked to other cancer survivors and we share a common bond that comes with the territory. For lack of a better term, let's just call it "angst." You simply can't get away from the reality of the cancer experience. While it becomes less a part of your physical being, it clearly is in the back of your mind. I write this only because those of you fortunate enough not to have dealt with cancer on a personal basis need to know how your friends who have been afflicted have had their lives changed.

Cancer Roller Coaster

I know, it's been awhile but I was hoping to sort of have some good news to share on the first anniversary of the end of treatment (June 10, 2010). If this is a little incoherent or unclear, I apologize in advance as my editor (Diane) is in Texas helping Jen who had son #3, Paul Austin, on June 3rd.

When I visited with the ENT specialist in March we decided I probably did not need a Pet Scan on my one year anniversary--it just doesn't usually show much in cases like mine. Well, things change, don't they. A couple of weeks ago I started getting bites or something on my neck, back, and chest. I assumed it was a gnat infestation and got some Atarax to help stop the itching. Then the lymph nodes on my neck enlarged, and I quite frankly started to worry a bit.

Cancer folks tend to project when it comes to any little health issue. I was scheduled to see the Ear, Nose, and Throat doctor today but called yesterday, and they said they would squeeze me in so off I went to Burlington. Dr. Doug Henrich looked at me and said, "I think we have a number of things happening here. Your immune system has been compromised, your lymph nodes are indeed enlarged, you have had radiation and chemotherapy and you probably got bitten by something--simple as that." But" he continued, "in light of all this, let's go for a Pet Scan sooner rather than later." Now I am scheduled to go to Corpus Christi tomorrow (Thursday to Chicago and Friday to Texas) so time becomes an issue. Dr. H worked some magic and got me in this morning at 8 a..m so back I went to Burlington after another scratchy night.

Now, in case you haven't had a Pet Scan and my function is to inform you about how this works, here goes. No food, no exercise, lots of water as preparation for the procedure. You check into the hospital, go to a little room where they check your blood sugar and inject some radioactive "stuff" then put you in another room where you are to sit quietly for an hour. Are you having fun yet? Then you go in and out of a machine for 30 minutes that does the imaging so the whole process takes about 2 hours. I then went to Henrich's office and gave them my phone number and Diane's cell and asked them to call when results are available which should be tomorrow or Friday. So as I type this I wonder 1. will everything be fine and I just need to avoid bugs, 2. will results be inconclusive and more waiting or 3. will Doug say,"Do not get on the plane but rather I need to see you right away." I forgot a major point here (see, I told you my editor is busy elsewhere) and that is that Doug feels there is a 99% chance that this is all about nothing but he wants to make sure.

All this leaves me a bit confused, a tad worried, impatient as usual, and still scratching!! The thought for now is to proceed with our original plan, and I shall be on the Amtrak to Chicago tomorrow and fly out of Midway on Friday morning and spend about 10 days in the Lone Star State before driving back to Macomb. That's right. The car is in Texas as Diane drove down alone and again receives Mother of the Year honor from her children and grandchildren. So there you have it, hopefully much ado about nothing but again our original purpose in starting the blog was to inform and that is what we are endeavoring to do, even when times get a little unpredictable, vague, or to be quite honest--scary. We shall keep you informed. It is the interminable waiting that drives us crazy!

We are on the top of the roller coaster ride once again. At 4:30 p.m. Dr. Henrich called me at home to say, “there are no signs of cancer, Gordy, and I’ll see you in three months.” WOW! Fantastic. Now I don’t know why my neck looks like Barry Bonds’s neck but thank God it is not because of cancerous lymph nodes. Diane tells me it is so hot and dry in southeast Texas that no bugs can survive.

The Conductor and the Idiot

Progress continues on most fronts. My weight is constant between 165 and 170--that is fine with me. I walk an hour a day, jog a mile 3 times a week, and lift weights when I'm in the mood which is not often enough. It is the little things that continue to remind me that I'm getting better. When I was driving to Chicago a couple of weeks ago to pick up Diane at Midway Airport, I passed another milestone and didn't even know it. I was on Interstate 80 listening to Leonard Bernstein's "West Side Story" when a truck driver drove by my car and gave me a funny look. It was then that I realized I WAS CONDUCTING AGAIN. I haven't done this since we drove to Florida in February 2010. I do this from time to time. I drive the car and "air conduct" an imaginary orchestra/symphony. I've been doing this for years, but this is the first time since my bout with cancer that I've allowed myself to forget for a moment and just get caught up in a different positive moment. It's another positive sign.

The sun is finally out which means I'm out in the yard where I'm happiest. I'm proud to report there are no weeds in my yard--not 10, not 5, but 0 as I write this. Not sure where this particular display of anal behavior emanates, but I did yard work to earn money for college.

As for the "Idiot" referred to in the title of this posting, I had a little incident last week that reminded me that I will probably always be recovering. Diane was visiting friends, and I had had a long productive day in the yard after which I came in, took a shower, and realized I was sore. It has been a couple of months since I tried taking an Advil and heck I can eat anything, so surely I can swallow a couple of Advils. It was 6 p.m., and I looked in the mirror, got a glass of water, got an Advil, told myself I can do this, and swallowed the Advil--not exactly.

I again looked in the mirror and this time, I could see the concern in my face. Now I am not going to die when this happens, and I'm not sure why as I can continue to breathe. However, it is a scary moment as my throat becomes constricted and nothing can get down where it is supposed to go. I tried to expectorate it--no go. Next, I hit myself in the back--no go. I got down on my hands and knees in front of the toilet and tried to throw up--no go. In a moment of desperation, I attempted to drink water but it wouldn't go anywhere as the damn Advil was blocking my throat passage. Therefore, the water simply ended up in the sink. What the hell was I going to do? The answer was simple--not much. I sat down on the bed and waited for the little pill to dissolve which it did. I had this experience a couple of months ago and assumed that by now I could swallow a damn pill but obviously, I was wrong. Sometimes we are our own worst enemy. Why idiot? Simple, I should have waited until Diane was in the house to give me a hard smack on the back which worked previously when this happened. Oh well, live and learn.

Living With Expectations and an Unexpected Honor

Jim and Dorothy Grigsby (circa 1975)

April 25, 2011

An Entry from Diane:

"Living with Expectations" was the title of Rev. Russ Smith's sermon at Wesley United Methodist Church where we have been members for years. Gordy and I attended the 11 a.m. traditional service that day to hear the wonderful Easter music and an extra special selection by the choir singing Handel's "Messiah"--it was magnificent. As Gordy and I drove home, I commented about how our cancer journey as patient and caregiver had been anything but living with daily expectations. When healthy people wake up, they generally have a daily routine--eat breakfast, maybe exercise, go to work, read, talk and visit others, run errands, have lunch, watch tv, fix and eat dinner, and repeat these activities the next day with minor variations.

Healthy individuals are at "ease" with this predictable routine. For eight months, our lives were basically devoid of predictable expectations. We never knew what was around the corner from one day to the next. How would he respond to each successive dose of radiation and chemotherapy, how could we get nutrients into his body, how could I keep him comfortable, when would either of us feel some sense of control in our lives again.Today that sense of normalcy is returning. Make no mistake, this journey is not over. While visiting friends last week in San Francisco, Gord had one mild choking incident and on two occasions suggested he go back to the hotel to rest for a while. He would never have done that before all this happened.

When the body has a disease, the ease goes out the window. It did for both of us. For two people who prefer an organized existence, we certainly were not at ease but coped as best we could with the new normal. He had middle of the night feedings through the feeding tube, no normal meals, copious meds at different intervals, unusual sleeping patterns, lessened levels of concentration, and the cloud of uncertainty living with cancer. We are grateful that in bits and pieces our lives are again approaching some sense of normalcy.

An Unexpected Honor

Every year through the Office of Student Activities Western Illinois University, various student leadership awards are given to well-deserving individuals. Gordy received a letter informing him that the James M. Grigsby Student Leadership Award was being renamed the Gordon A. Taylor Student Leadership Award. This is truly an honor that will live on for decades. Gordy not only was given an opportunity to speak at the awards ceremony on April 25th but also gave out plaques to 5 students who were nominated by faculty, administrators, and/or peers. Both of us knew Vice President Grigsby as students in the late 60s and then as faculty/administrators. Like Jim, Gordy has a profound loyalty and love for WIU.

Here is what is written in the program:
The Gordon A. Taylor Student Leadership Award recognizes outstanding leadership and accomplishments within recognized student organizations and clubs. This award, formerly known as the James M. Grigsby Student Leadership Award, is awarded to five graduating seniors who have made a substantial contributions to their respective organization by not only holding a leadership position but by stepping above the minimum requirements of their position. Gordy Taylor served Western Illinois University for over 35 years, serving as the director of Western's award-winning program for 28 of those years. During his tenure, WIU received numerous awards from the Council for Advancement and Support of Education (CASE). The awards included recognition for student involvement programs, specific alumni awards and the grand gold award for overall alumni programs in 1994. In addition, Gordy also initiated the WIN (Western Illinois Now) alumni fundraising program. Although Gordy retired in 2006, he still continues to serve WIU as well as the Macomb community. Gordy still conducts interviews with people from the surrounding area on WIUTV3, Western's student-run television station, and also does motivational speaking. Additionally, he continues to put in countless hours into making Western Illinois University a better institution and Macomb a better place to live through various community service and charity events.

We are thrilled with this unexpected honor and as Gord says, "Diane, I am really humbled by this. Jim Grigsby was a man I always respected and admired. He was a straight shooter and man of great integrity. Jim was also a friend of the student." It was a memorable night!

Reflections and Transitions

Lisa and Gordon, Steppenwolf Red and White Ball, Chicago, April 2011

Gordy and Tulips, April 2011

Today is Easter Sunday. I awoke at 4:30 a.m. and by 5:30, I was out the door for a tranquil walk around campus. I had a purpose this morning. It has been a year since my personal odyssey began, and I wanted to take some time to think about both my good fortune and where I had traveled the past twelve months. I realized within the first five minutes that I had much for which to be thankful. After all, I am writing this. It has been a year that included the now famous sore throat and ear ache, a life changing biopsy, countless visits with specialists, the mask, radiation, chemotherapy, product, PEG, 50 round trips to Burlington, painkillers, hurling, going down to 153 pounds, inability to eat or swallow for eight months, choking, learning patience, the new normal, and gradual, painstakingly slow recovery, but recovery it is.

On this day, I thought about all the people who were there for Diane and me with cards, emails, blog comments, letters, notes, prayers, phone calls, rides, personal visits, and of course, those unsolicited hugs on what became my daily walk. I am truly blessed and have the good sense to realize that. There is progress yet to be made, but many positive things have happened since I started treatment on April 22, 2010. The journey continues.

I am a man. My children are just that, children or so I thought. As we age, things happen that force us to come to grips with the reality that a new order has arrived. It seems like last week but it was 1991. I was beating Gordon III in “driveway basketball.” You know what I mean. You defeat your children year after year playing one-on-one at the hoop you put up in the driveway to prove that you still have it. I never lost to Gordon Taylor III. I was bigger and stronger. I was a man; he was a boy. Even if he was the ace three-point shooter on the Macomb High varsity basketball team, I could psyche him out when the game was on the line.

Then it happened. I stood in the driveway prepared for our usual mortal combat and something changed. I was the same, 46 years of sinewy muscle and raw talent ready for my annual triumph. What was different was Gordon Taylor III. I looked toward the front door and out he loped—all 6’3’’ 160 pounds of him. He looked different. He was relaxed, confident, poised, and self-assured. The rest is history. It was ugly, painful, and degrading FOR ME!! After his triumph, Gordon led me to the front porch, sat me down, patted me on the head, and proudly announced, “The King is dead, long live the King.” I knew then that young Gordon was becoming a man and our roles were going to change in the years ahead.

This evolving of our children took a new step this week. While Diane and I are proud of the accomplishments of all three Taylor siblings, Gordon gets top billing today. As I type this, he is pulling into to Austin, Texas, where starting tomorrow, he is the new Director of Sales at the Austin Hyatt Regency. Gordon has been preparing himself to make such a move for the past twelve years as he has gained valuable experience with both Marriott and Hyatt. This is a terrific promotion, and Diane and I are very proud of Gordon today. He is confident, self-assured, and ready.

Lisa and he will adjust quickly to the challenges that lie ahead and surely thrive in their new environment. I told Gordon this is the nature of things. Mom and I had our careers and now it is your turn. I relayed to Gordon how Diane and I at ages 22 and 20 left Hinsdale in a 1961 Chevy with 100,000 miles for Gainesville, Florida, where I was to begin graduate school. It was 1968, we were newlyweds, the war was raging in Vietnam, I did not have a deferment, Diane did not have a job, and we had $700. It was scary, and we did a lot of growing up but we did it. There was no turning back and the same is true for the next generation of Taylors. They will do what they need to do and someday look back, as Diane and I do, and wonder just how they did it but they will.

My tulips are blooming thanks to the generosity of Lynn and Linda Sordel who sent me a new supply last fall and, of course, to the labor of grandsons Luke and James Stevenson who helped me plant them. Happy Easter.

Hot Dogs, Doctors, and a Door

It’s been a busy couple of weeks for the Taylors. Diane went to Texas and saw the Stevenson family which includes grandsons Luke and James. Jennifer is in her 32nd week and due with son #3 in early June--all very exciting. Ruth, Diane’s sister, flew from Denver to Corpus to surprise the Stevensons. From all reports, they had a blast. After Texas, Diane flew into Midway where I picked her up, and we spent a delightful weekend visiting her parents, Paul and Marsha, and then sons Ryan and Gordon and daughter-in-law Lisa--lots of laughs and stories when this group gets together.

While Diane was on her travels, I kept busy as well. I mentioned in an earlier blog that I went to a hockey game in Peoria but failed to mention that I ate a hot dog, bun and all. That may not seem like much to you, but to me it was a VERY big deal. I love hot dogs in spite of what is in them, and it had been over a year since I could even think about consuming one, but I did it. Now, it wasn’t pretty, but mission accomplished.

I am hopefully done with doctors for a while. Within the past two weeks I started out with a complete physical and blood workup and everything looks good--low cholesterol, high HDL, low LDL, and low prostate score (important to men). Diane left town so I got the bright idea to schedule a stress test and colonoscopy ON THE SAME DAY. It was recommended that I do both, but on the same day and with Diane in Texas was a bit bold. Of course, with the Gordy Taylor School of Questionable Reasoning, it made perfect sense. They wanted me to fast before the stress test, and we all know what needs to be done before they look into your colon so Sunday evening the 10th of April my activities were rather restricted. Monday the 11th went well. I passed the stress test with flying colors and colonoscopy clear except one small insignificant polyp so I am clear for 10 years.

That, my friends, leads us to “the door.” A little strange humor has returned to our lives. It was a year ago that I got my tube, and I started treatment on the 22nd of April so it has been quite a 12 months. I have survived, I feel good, I’m getting stronger, life is good, but things happen. On the night prior to Diane’s departure for Corpus Christi, I was talking on the cell phone when I turned the corner and entered our bedroom NOT noticing that the door was open. I walked smack into the corner of it and as I proceeded to the bathroom to “check damages,” I felt warmth come across my face. I looked in the mirror and was bleeding like a “stuck pig” with a one-inch gash on my forehead. I started laughing to which Diane exclaimed, “What’s so funny, you could bleed to death” to which I replied, “How could I endure all the challenges of the last year and then have this happen?” It was surreal and oddly humorous to me. I told Dr. Diane that the bleeding would stop but the good doctor insisted we go to the emergency room where they literally glued my forehead back together. How could I be so stupid? I’ve heard of people who can’t walk and chew gum at the same time, but I am the first person I know who is clearly unable to talk on the phone and not walk into things at the same time.

My humorous travails manifested themselves again yesterday on our return to Macomb from Chicago. We stopped to see our friend in the Dixon Correctional Center, and I treated to lunch which means using a prepaid card to access a variety of vending machines adjacent to the visiting area. Diane opted for Doritos and a Dove bar, our friend had a steak sandwich and Klondike bar and Mr. Hot Dog chose, naturally, that. I walked up to the machine that dispenses food and proudly pushed a couple of buttons. Out came my very own Jalapeno Polish Sausage instead of a plain hot dog. I couldn’t believe it, but not to be deterred, after 9 packages of catsup the JPS was consumed along with copious amounts of water.

I continue to improve daily and am proud to announce that in a very small way, I can actually taste some things. I even jogged two miles outside last week--slow and not very graceful, but I did it. We are at the ten-month point into recovery, so we shall see where the next couple of months take us. The adventure continues. I shall attempt to exit the room now without hitting my head.

The Patient Thief

It has been an interesting couple of weeks. The weather here has been such that outside activities have been quite limited--just a little too cold for me to get out in the yard. This hasn't happened for a couple of years, but Gordy Taylor officially has cabin fever. I find myself walking around the house looking for things to occupy my time. Soon the weather will change and all will be well with the world.

During my daily walks when I'm alone (meaning Diane is not with me), I have a chance to think. I constantly remind myself of my good fortune, and as a matter of fact, in church today Rev. Russ Smith talked about the miracle of recovery from a potentially terminal illness. Why do some of us survive and others do not? As I make progress, and that is happening, I realize that cancer is always there lurking in the background. Like others who are currently "cancer free," we wonder what tomorrow will bring. Cancer is cunning, mean, unforgiving, baffling, powerful, life-changing, and patient. Oh, so patient.

I wonder daily about my health. Every new ache or pain or physical change has the potential to change my life. I try not to let these things bother me, but it is difficult not to wonder. After all, this journey started over lunch with a sore throat followed by a couple days later an earache. Cancer shakes one's self-confidence, diminishes health, and has caused me to lose a bit of my "devil may care" attitude about the world in which I live. The innocence I once had about life and death is no more as I am now acutely aware of the fragility of life.

The past couple of weeks have been difficult for Diane and me as we have lost 6 people ranging in age from 9 months to 68. For some, the time had simply come, for another cancer was the culprit, for a young man an auto accident, and for the baby a sudden and tragic ending. It's been a bit of roller coaster--here today and gone tomorrow. No doubt the fact that I'm aging explains part of this but not all of it.

I am reminded of the sage advice I received while walking on the beach in Florida 1990. A woman I ran into on my morning walk said, "remember, always remember, every day above ground is a great day." She is absolutely correct. I intend to enjoy each day for the gift it is because we are not invincible and some day will indeed be our last day. Believe me, I am fine, life is good, but sometimes it is good for us to pause and reflect on the temporary nature of our existence.