Happy Days are Here Again!!!

DATELINE: Cancer Care Center, West Burlington, IA.

DATE: November 29, 2010

APPOINTMENTS: 10:00, 11:00, 12:30, 1:30

RESULTS: ALL GOOD.

Today is a day we will not soon forget. We think about what could have happened and didn't. Every visit to each doctor was excellent in terms of the results we received. The hot spot located near my upper breast bone is gone. The smaller one located near my vocal chords is there but no one seems to think it is cancerous. The Ear, Nose, and Throat doctor did a thorough visual scope/examination of my base of tongue, throat, and vocal chords and saw nothing.

Here is the prognosis: I am to see the ENT doctor at the end of March and there's probably no need to see the other doctors unless my situation changes for the worse. There are no guarantees here but we could not have gotten better news. We have kept our emotions pretty much in check until now as we type this and are overwhelmed with emotion. This has been quite a 9 month roller coaster ride. When one deals with cancer, I'm told, the prospect of recurrence is always there but for now the 800 pound gorilla has been sent back to Jane Goddall where he belongs.

There is more good news. As of Thursday morning at 8:45, PEG will become history. Don Patterson will then have to share center stage with me as one of two men in Macomb to have 2 navels. Diane sold the doctors on my ability to move on without PEG. She somehow convinced them that I'm disciplined, focused, and goal-oriented--go figure. I will now supplement my diet with Ensure Plus and Boost Plus. We both think this is doable which is a good thing as we plan to be in Chicago and Texas in December.

More reports will be forthcoming as this journey is not yet over but we do want to say from the bottom of our hearts: THANKS TO ALL OF YOU for the support that you have provided us these past 9 months. It's hard to believe that on March 1, 2010 our lives were pretty much as they had always been but on March 2nd, they changed forever. Diagnosis, PEG insertion, radiation, chemotherapy, 50 trips to Burlington, sickness, a stay in the hospital, substantial weight loss, and probably worst of all for me: the inability to speak for 2 weeks. You can all stop laughing at this point. And so it goes.....

Options

Lou Gehrig, Yankee Stadium

The PET-CT scan is in the books. Since my appointment was at 6:30 this morning, we spent the night at David and Gretchen Miller's home. This way we dodged the early morning deer and it made for a less stressful day. I was told to do nothing the day before the test except drink water, drink water, drink water. No walking. No working in the yard. No nothing. So I was a good boy did just that. We get the results on Monday, the 29th. At this point, I assume one of five things will happen. Of course even though I'm a doctor, I'm not the kind who can help anyone medically. Here's what I think could happen in descending order of desirability:

1. The "hot spots" are gone and the PET-CT scan is clear.

2. The "hot spots" are still there but too soon to do anything and they need to be watched and monitored.

3. The "hot spots" have grown since August 25th, and it is time for more radiation.

4. The "hot spots" have grown and neck dissection surgery is in order.

5. Call my son the lawyer and get my affairs in order.

If the way I feel is any indication, it will be option number 1 or 2. Gee, on Monday old friends Bob and Donna O'Toole drove from Downers Grove to Macomb, and we had a lovely visit. We went out for lunch and I had a cup of chicken noodle soup, some potato chips, a pickle, and some of Diane's chicken salad sandwich including the bread. Oh, and I forgot--12 glasses of water.

For me, November 29th is Thanksgiving, Christmas, 4th of July, Diane's birthday, my birthday, and the kids' birthdays all rolled into one in terms of its significance. We will do a blog post late Monday afternoon upon our return to Macomb after our doctors' appointments.

Regardless of the results, good or bad, I have remained steadfast in my appraisal of my situation. I'm borrowing here what Lou Gehrig, the famous Yankee baseball player, said it best after he had been diagnosed with ALS which is a disease that carries his name. In front of a full house at Yankee Stadium on July 4, 1939, Gehrig gave his farewell speech. He said, "Fans, for the past two weeks you have been reading about the bad break I got. Yet today, I consider myself the luckiest man on the face of the earth." I must admit that as I compose this, I am overwrought with emotion. I have much for which to be thankful. Happy Thanksgiving to all of you!!

Dinner Date, Discipline, New Friends

At the counter with James and Luke in October 2009
Part of Chris on the left.

I got a bright idea last week--an actual Friday night date with Diane. We hadn't been out together alone at night, and I thought it was time. I was wrong. Breakfast and lunch are fine. We dress casual, and we are in and out. At breakfast, I usually order an egg and water (now that's a visual) and then pirate some of Diane's pancake or whatever else is on her plate. Lunch is pretty much the same as I order soup and then help myself to whatever Diane has ordered. But a date is different.

We both showered, put on reasonably nice clothes, used a little fragrance, and then savoured a glass of Sauvignon Blanc wine while listening to the old standards music like Sinatra, Julie London, and Peggy Lee. The evening began nicely and soon we were off for our 7:00 reservation. We were seated a nice table at Magnolia's and owner Lisa Ward was attentive to our every need. The three of us visited a bit and then we ordered. That's when it happened. After our salads arrived, we began eating and I made eye contact with Diane. After 42 years of marriage without saying a word, the eyes tell the story. Diane looked over and said, "Gord, you don't have to eat all of it." I took another bite or two and pushed it aside asking for a to go box for salad. Can you believe it? The entree was served and it was excellent. However, you could sense the sadness at our table as I looked at Diane and new immediately what was wrong. She reluctantly admitted that it broke her heart to watch me struggle to eat my dinner. I now realize with certainty that at the present time I no longer live to eat but rather eat to live. Going out for dinner used to be one of our small pleasures and entertainment but that will be on hold in the near future. The restaurant setting was fine, the company terrific, and the food excellent but the "magic" just wasn't there. As we drove home, Diane and I reminded ourselves that we are dealing with cancer and its aftermath. Our lives in many ways have evolved to the new normal and we take an awful lot for granted.

It's no secret; Gordy Taylor has a Type A personality who enjoys being active. I like routine, am a planner, and like to keep busy. For a while, my routine was to lay in bed, take medication, take product, and sleep. Now my life has some normalcy to it. I am convinced I have been well served and Diane would agree with this that my over zealous discipline has expedited my recovery. I have not yet missed a product feeding which means I get up in the middle of the night, have a drink of water, and hook up 2 cans of product through PEG. Currently, I ingest 4 cans of product per day, and a bottle of Ensure Plus and Boost Plus. I don't allow myself to miss a feeding. Walking an hour a day is part of my daily regimen, and I seldom skip a day. To my credit, I have done everything the doctors have instructed me to do, but then it doesn't take a rocket scientist to realize that following their directives is in my best interest.

We have been customers of Ford Hopkins Pharmacy on the Macomb Square for 40 years. We simply like to support local businesses. But things are different now as Ford Hopkins has become a daily stop for me. It is more than a little bit like Norm on Cheers. I walk in the front door and greeted by Roberta at the front counter. As I walk past the old time soda fountain, I call out to the smiling Chris "what does a guy have to do to get a vanilla malt to go?" She laughs; I laugh. Then I put $3.06 on the counter and proceed back to the pharmacy department where I exchange pleasantries with pharmacists Leslie and owner Rick Crossett. If I have a prescription to get, Marilyn is there behind the second counter to handle that process. These five wonderful folks have, for the time being, become part of my daily routine. Life in a small town--you can't beat it.

A Caretaker's View

Diane, James (2), Luke (6), Gordy

It has been a while since I penned an entry and with the impending PET-CT scan, my mind has been in overdrive swirling with many random thoughts. Like Gordy, I view the glass half full and not half empty. In fact, there's nothing "half" in our lives; it's always been full. We are blessed. Gord has written about his "c" journey, and I have had my own "c" travels except mine is not cancer but care giving. When I was fully engrossed in my Dr. Diane mode administering medicines including the all important doses and times, I was extremely organized and in command. "Product" feedings were also a part of my daily routine. Thankfully all of this has stopped. I was a "helicopter" hovering over my partner in life trying to do everything possible to keep him comfortable. The challenge for me has been to back off and let go.

Now about that 800 pound gorilla!! Yes, his presence is felt in our lives. However, since the PET-scan results on August 25th indicated 2 "hot spots" of activity which can mean cancer, we refuse to allow the gorilla to grow and become unmanageable. When we have family and friends visit, our minds focus on others and not on the gorilla. My brother Paul said, "when the family is around, the gorilla doesn't grow and disappears for a while which is good for you and Gordy." He's right. A high school classmate of Gordy's wrote that we need to send the gorilla back to Jane Goddall!! You are so right, Sharon!! Many friends have said it isn't fair that we've had to live in limbo since the end of August and maybe they are right. However, children suffering from cancer and other diseases isn't fair either.

Our home has always been fondly referred to as the Taylor B & B. We've always had people staying with us especially since Gordy had been the "alumni" guy. As far back as WIU's Homecoming 1970 when we lived at Southern Hills apartments as a new faculty prof and his wife, we had friends "crash" with us--am I dating myself? Since the end of April, the B & B for the most part has had a "no vacancy" sign out. As his caregiver, I have described myself as a bulldog guarding his welfare. I've had to limit his time with others because he was tired and weak. People called before they came over; this is a new one for us and fortunately is no longer the case. Friends and family have been so very understanding.

Worry seems to be my middle name. When Ryan was in college, he said, "Mom, if I ever talk to another student who is feeling like no one cares, I will tell them that my mom worries for everyone so don't feel alone." Gordon also had some very wise words for me when I was in extra worry mode: don't worry about it, pray about it. When Gordon and Ryan are around us, it seems like we have had role reversals. I try to recite the Serenity Prayer when worry comes to visit.

There is a saying about how a doctor should not try to "heal thyself." I did a fine job as Gord's caregiver. People reminded me to take care of myself. I would quickly say, "oh sure, I'm okay." However, once we were in the throws of his treatment, I quit taking my hour walks, quit taking my vitamins, quit eating proper foods (Rice Krispies for dinner 3 times a week is not good), quit sleeping through the night, and had 2 sinus infections. I had an apt. with my internist for a general check-up with blood work. While in his office, he asked how I liked retirement with an easier schedule. I began to chuckle as I told him about my parents, their health challenges and changes in living arrangements. I also mentioned my new role as caregiver since the end of March. My blood pressure is a bit elevated from the usual 120. My LDL (lousy) cholesterol has increased. "You are living in a pressure cooker situation right now," Dr. Reem explained. For now, we are waiting until January to see if these things change. Yes, folks, chronic stress along with not taking care of yourself reaps unwanted health issues. Caregivers take care of yourselves.

Finally, a week does not go by that Gordy and I receive not only a card but a sincere note from Marilyn Johnson. The verse on the card this week is about the "c" words like crummy or cancer. Then it shifts focus onto good "c" words like courage, comfort, and caring. And of course Marilyn provides wonderful written words too. Gordy has shown tremendous courage. Friends and family have comforted us with their love and support. Thank you for caring about us.

Now where are Luke and James when I need a dose of hugs and kisses from my grandsons? They always bring smiles to our faces, love to our hearts, and laughter to our lives.

Health, Bucket List, and the "Dates"

HEALTH

It has become apparent to me that one of our greatest gifts is our health. We tend to take it for granted until we don't have it or until it is diminished. I obviously fall into the latter category. Wednesday I'm going to see a dermatologist in, of course West Burlington, as I am suddenly besieged with little dark itchy bumps on my upper torso. I started out with a couple and now I have a bunch. They need to be looked at by a specialist. My uninformed guess is that they are some kind of hives resulting from my unintended focus on the upcoming PET-scan. I don't intend to project about what lies ahead but human nature says otherwise.

There's some very good news to report. I'm better!! The progress is so slow that I hardly notice it until I think in the aggregate. Yesterday, in addition to "product" and Ensure, I had oatmeal in the morning; Uncle Steve's hot chili dip during the Bears game; a small portion of ham, potatoes, and applesauce for dinner; and ice cream for a night time treat. How about that!! Now, none of it tastes really good but I am eating. Comparing where I was 3 months ago struggling to have one drink of water, I have come a long way. My taste buds and salivary glands will be permanently compromised but it dawned on me that I clearly on the upswing. Hurray!

BUCKET LIST

Since seeing the movie with Jack Nicholson and Morgan Freeman, Diane and I have discussed our individual lists. I don't have much on my list. This is not because it doesn't exist, but I've lived a life where I've experienced pretty much everything I wanted to. About five years ago, I decided that a walk to the bottom of the Grand Canyon was in order. Fortunately for me, brother-in-law Steve Drew is an Eagle Scout and he coordinated everything. We left the rim early in the morning and arrived at the base of the Canyon by 3 p.m. My legs were fine but my shins bothered me. Steve arranged for lodging and food, and we walked out the next morning. Here's where it gets funny. We stopped in Kingman, AZ, on our drive back to Las Vegas after sitting in the car for about 3 hours. We opened the car doors and tried to get out. Steve and I could hardly walk. We stood in the parking lot bent over laughing at each other because we looked like a couple of 90 year old men. While painful, it was a hoot, and our walk into the restaurant to get a bite to eat took forever.

I tell this story to remind all of you, particularly those of you in the plus 60 set, to not wait "too long" to do those things that require physical stamina and good health. I was just shy of 60 when Steve and I made our trip, and it was fine though challenging. I'm glad I did it when I did because I couldn't do it today.

My next big bucket list item is Italy and France with Diane in September. We plan to go to Rome, Florence, Cortona, Sestri Levante, Cannes, and Paris. It's time for me to use some of my Marriott points. What am I waiting for?

THE DATES

No secret here. PET-Scan, November 24th, and follow-up doctors' appointments to find out results etc. on Monday, November 29th, which will determine the future. More to follow.....

Copland and Melancholy

American Composer Aaron Copland

We made another trip to the Chicago area. On Wednesday, Nov. 3rd, we had lunch with Bob and Jerry Lynn Cox in Geneva at the Little Owl which is a local restaurant with a lot of character. Bob has had a bout with multiple myeloma cancer so we compared notes. Robert Wayne Cox is a special person to me as he mentored me at Western when he was a resident assistant (R.A.) on Seal Hall Three, and he supported my pursuit of an R.A. job as well. That evening Diane and I had dinner with Mike and Judy Mason in Clarendon Hills. Mike and I are members of the Class of 1964 of Hinsdale Township (now Central) High School, and we always room together when a group of guys from our class get together for road trips.

Thursday was a long but enjoyable day. Somehow when I was in junior high I got hooked on the music of the great American composer of Aaron Copland. I probably have about every piece of music he composed. It is not unusual for people to see me on I-88 arms in motion conducting my own imaginary Aaron Copland concert. I'm sure people are alarmed when they see me, but in my mind, I'm really pretty good! During radiation, patients are encouraged to bring their own CD's to play during treatment. Coach Patterson listened to Neil Diamond for all 35 treatments; and I drove the radiation staff crazy listening to endless Copland compositions.

Several months ago good friends Judy and Roger Miller who regularly attend the Chicago Symphony called and said, "Guess what, Copland's 'Appalachian Spring' is being performed November 4th, and you and Diane are going with us!" Little did we know back then what the past few months would bring our way. It was truly a game day decision, but we decided a trip out of Macomb would be good for me. Even though I still have PEG, I left Macomb without "product" and relied on Ensure and Boost Plus.

I rested for a couple of hours at Millers that afternoon since I knew I would be up late. We had a great evening. For two glorious uninterrupted hours, I was oblivious to my situation and just sat back and enjoyed the beautiful music. Thanks Judy and Roger!!

Friday morning, Diane drove me to LaGrange in order catch the train to Macomb while she sent a lovely weekend with her family in Zion. Diane's dad continues to get deeper into his vascular dementia but still smiles when he sees her. Her mom is active and content at the assisted living complex. Diane came home and said she had a great time, especially with her mom. It was a nice change of pace for Diane.

That brings me to melancholy. I get a little better every day with an emphasis on the word "little." I am reluctantly coming to the realization that the "new normal" will not be the old normal. Resting for two hours before going out at night is simply not part of my make-up, but it is now. It's the little things that get to me. When I sneeze or cough, my head hurts. When I work in the yard, I can only do so for about two hours then I'm done for the day. The "old normal" allowed me to work outside all day. The dry mouth is a constant reminder of my condition. I have a hard time remembering to take water every where I go. Loss of taste buds has really been a bummer. I do so love the taste of food, and I have good fortune of being married to an excellent cook. It is very difficult to eat when nothing has much taste at all, but reality is I need to do so if I ever hope to free myself from PEG. All of these things contribute to my melancholy mood at times.

I am no longer in control of my body. Every time I get an ache or a pain, I wonder is this something to worry about? Is this connected to my treatment? Is this to be expected? Is this another form of cancer? Sunday morning, I took an early walk and suddenly and inexplicably got a bloody nose. What the heck is this? And then I remember the words of Mike Mason who said, "Yeah, Gord, you are recovering from cancer but we are also 64 years old, and it is difficult to determine what is health related and what is old age."

It has always been my intent to be completely honest with what I write here, and I must confess I have some ambivalence about this experience with cancer. I have much to be thankful for as I do feel pretty good! I miss the old Gordy; however, I'm getting used to the new Gordy.

Tick Tock Tick Tock

I don't know why for sure but I've always been a big fan of Peter Pan. I suppose it's because his motto is "I won't grow up." Of course, cancer has a way of no longer making that phrase work real well but still James, Luke, Diane, and I enjoyed sitting in front of the TV watching the Disney Classic from beginning to end. When the crocodile is chasing Captain Hook, because of the fact that he swallowed an alarm clock, he goes "tick tock tick tock" and Captain Hook knows when he is the vicinity. Can't you just see Hook's eyebrows go up and down with each tick of the clock--priceless!!

As we wait for the PET scan hopefully at the end of this month, Diane and I can't help but hear the tick tock of expected results impacting out lives. I try not to think about it. Diane tries not to think about it. But the closer we get to this date when we find out if the "hot spots" are gone, we can't help but wonder what the results will be. We try not to project. However, it is possible that we will be getting what amounts to life or death feedback.

I thought that this had not affected me all that much until yesterday when I looked in the mirror, really looked in the mirror. I've been told over the years that I look youthful but yesterday was a bit of a wake up call. Who the hell is that old guy with the gaunt expression looking back at me? Oh my God, it's me! For the first time I realized that this cancer trip has taken a bit of a toll on youthful Gord. I mentioned that I think I've aged a bit to Diane as we walked around the Rec Center track and to my amazement she said nothing. Good God, she didn't disagree with me. Her silence spoke volumes. Oh well. This too shall pass.

Until we get the results the first week of December, Diane and I will continue to live with the 800-pound gorilla in our house, our car, on our walks, in our bed, and every where else we go. Such fun.