Symbolism

I'd have a more specific title but I'm a little short of words on how to describe the above photos. When we first arrived at Fort Myers Beach in early February, I announced I was going to lose 10 pounds which as explained elsewhere here, I unfortunately did. On many days I would walk between 5 to 15 miles as the beach is long, unobstructed, and beautiful. I have always been an early morning riser so it was not uncommon for me to hit the beach at 6 a.m. when the moon was still out and the stars were in the sky, and I was the only person on the beach walking that early.

I walked north to Bowditch Park where I turned around and returned our house. This particular round trip was about 5 miles. At some point prior to my diagnosis, I came across a large piece of driftwood firmly implanted in the sand much like the barriers you see in those famous photos on Normandy on D-Day. At first, I smacked my hand on the driftwood just when I thought about it but later it became a ritual--one pat on the way down, another pat on the way back, and then after my diagnosis on March 4th, my little ritual somehow became symbolic of what lied ahead. Did I hit it because it was strong or because it was always there or because I could count on it or because it gave me strength to face the future. On one of our walks, Diane noticed my little ritual and asked me about it. I explained to the best of my ability and in that somehow inexplicable relationship that develops in a marriage, she took the above photo during high tide.

As our departure date from Florida moved closer, I gave more and more thought to my driftwood adventure. I had NO idea of what was in store for Diane and me in the months to come, but I pledged that someday, good, bad, or indifferent, Diane and I would return to revisit this poignant part of our world. I remain committed to this return visit but know that it is a long way from becoming a reality as I could no more walk from our little house to Bowditch Park than I could from Macomb to Chicago.

The intricacies of marriage are complicated and unique to each couple. I told everyone that we should low-key Fathers Day as I wouldn't be up for doing anything. Just having Gordon and Ryan home was plenty for me. At the conclusion of our Fathers Day festivities, Diane smiled and said, "a couple more things." What do you give a person who has everything they want and, of course, something they don't want. Before I opened package number one, I thought what could this be? Our house is full of photos and paintings and there's just nothing left to give me. Well, wasn't I surprised. Enclosed was a aerial photo of the north end of Fort Myers Beach which highlights Bowditch Park where I took one of my daily walks. On it were the words, "I'll walk with you forever." Under normal circumstances, that would be pretty emotional, but during the current state of affairs, it was nothing short of spectacular.

Package number two was also flat. Hmmmm--the original Gettysburg Address? the original Constitution? I simply was clueless. Photo number 1 took me to the edge. Photo number 2 took me over. It was a photo of MY DRIFTWOOD--Gordy Taylor's driftwood that is now a permanent reminder that after this is over, I will take that walk and I will return to our special place that thousands of people will pass every day and none except us will know of its true meaning.

Now I'm around the house a LOT these days making up for having been on the road for 30 plus years as the alumni guy. I'm serious here. With the exception to West Burlington's Cancer Care Center, I have not left Macomb since March 30th. While we are giving each other space, I do pass Diane frequently and say, "what's up?, what are you doing?" You get my point. How in the world was she able to orchestrate this magnificent surprise as it required the Fort Myers local photographer, Kim Hambor, to not only see a photo taken by Diane of my driftwood but also finding it and capturing its essence on a beautiful sunset beach. Diane is forever indebted to Kim for her graciousness and kindness and wants to share her website: http://www.kimhambor.com

I'm still weak but taking daily walks and slowly gaining strength. I drank a little more water today and am going to try apple juice tomorrow. That's all on the health beat but I thought it worthwhile to share my driftwood story as we never know what events will change our lives and the relationships therein.

Same Old, Same Old

Remember, I never promised this would be a coming of age Catcher in the Rye or how to capture the past as in The Great Gatsby. I can assure you that this will not go the road of Long Days Journey Into Night but right now I feel like I could write a treatise NOT on Jack Kerouac's On the Road but more like Gordy's Trip to Nowhere! Maybe I shouldn't compose these at night because at the end of the day, I'm tired, sore, dry, and a little out of sorts. Don Patterson's words of last week still hold true--it will take a while for things to turn around.

I tried to swallow some water last night, and it really set me back as I couldn't get control of my desire to throw up. How can it come to this? The prospect of drinking a glass of water makes me want to vomit. I know I'm looking for big steps when little ones are all I can expect, but all my life it has seemed so simple: work hard--reward, word hard--recognition, work hard--good things happen and now for the first time I'm powerless to make good things happen on my terms. I almost feel I shouldn't write this but will anyway so that when the day comes and I can look back at this as just a painful memory, I'll know that there really were a few serious bumps in the road, and I didn't just imagine this.

On the positive side and there is indeed a positive side, on my appointment on Tuesday, Dr. El-Khoury thought my mouth looked better and my sores had diminished (hey, he gets the big bucks for looking in there). We are also decreasing the potency of some of my meds and eliminating others so that I don't become Frank Sinatra in Man With the Golden Arm. Don't ask me where I get this stuff, it just pops into my mind.

Let me try to put this in perspective: after two weeks from my final radiation treatment on June 10th, my hair is still falling out, and I spend 18 to 20 hours a day in bed--most of it resting in one form or another. My attention span is somewhere between 3 and 4 seconds.

This coming weekend is Heritage Days in Macomb. Generally this would find me on the Square waving to people who are actually in the local parade. However, today I made an executive decision. I make lots of those these days though none of them are of any consequence. I'm going to watch the festivities on the local access tv channel while hooked up to my breakfast, lunch, dessert, or dinner on my electric pump "product" dispenser. Yum, yum. For someone who normally enjoys a funnel cake and lemonade shake-up, visiting friends and former colleagues, this says a lot about my current state in terms of energy level. Okay, enough of this.

The Cubs won today in 13 innings and the Sox winning streak is now at 9. This weekend I will amuse myself with the Subway Series between the Cubs and the Sox.

One last thing: I'm learning to appreciate the little things. I always thought I did but in reality I rather assumed that everyone could take a walk and everyone could sit on their deck and enjoy a quiet moment with nature. I'm coming to realize that not everyone can enjoy a walk or even take one if they aren't healthy. The same goes for enjoying a cold glass of water--this is a pleasure I will never again take for granted.

What's That Slop You're Eating?

I concluded my last entry with a reference to the Honeymooners or at least Jackie Gleason in general so why not continue. Gleason was a Saturday night staple at the Taylor Family home in the late 1950s or whenever the show was popular. One night Ralph Kramden walks in and says to his ole buddy Ed Norton who is hovering over a bowl of soup "what's that slop you're eating?" It reminds me of my daily regimen of "product." Once Diane told me it had already been partially digested which is suppose to help my nausea, the slop analogy is always with me. This stuff is awful but it also is breakfast, lunch, dinner, cocktails, snacks, and dessert. I am not losing any more weight and ingest about 6 cans every 24 hours.

I have been waiting to write until I had some sort of break through but one has been slow coming. While the phlebitis has cleared up, I have substituted sores in the front of my tongue which are like chancre surrounding the tongue. We did manage to get some medicine (diflucan) and it has finally kicked in and I have some relief from the pain. My biggest challenges of late are mouth dryness and taste buds that have been destroyed and make nothing sound good. Darn it. I had hoped to by-pass this little issue but a quick call to Coach P let me know that "Gordy, now this is when it gets tough. People think because treatment has been completed you are feeling better and simply will not be the case for a number of weeks. This will all be very incremental--don't forget that." I sort of needed that wake-up call and have to remember to take things one day at a time.

On a positive note, I do feel better today. I took a 40-minute walk at 6:30 this morning and then around noon worked in the yard for 90 minutes. Diane was not pleased and in retrospect, I may have overdone it a little bit but all of this will involve daily adjustments.

Over the last weekend, Van Pogue and his lovely wife Lisa stopped by. They live in northern California and they were in town on some family business. Van is a Macomb native and always wanted to be like me when he grew up but instead he is a very handsome 6'2"--some guys get all the luck.

Gordon and Ryan have arrived for the weekend. And conveniently for them, the lawn had just been mowed. NO--not by me.

We see Dr. El-Khoury on Tuesday morning in Burlington. I guess he and his staff miss me. Or maybe they miss Diane.

I never thought the day would come but I do have trouble speaking--very thick. Actually, this is the point of contention between Mr. and Mrs. Taylor. I look at her and say "damn it, listen to me. How many times do I have to repeat myself." To which Diane replies, "try to articulate a little more--slow down."

Nagasaki East No More & Confessions of a Caregiver

Nagasaki East No More

The above photos show the before, in progress, and after photos of our new kitchen. I absolutely love it. We ordered the cabinets and worked with Winnie Nixa from West Side Lumber/Ace Hardware in Macomb back in January B.C. (before cancer). I was ready to say wait on the kitchen but Gordy talked with our neighbor on Indian Trail, Greg Mason, who is a firefighter and runs a construction business, when we returned from Florida and said, "let's go with the project." I don't think Gordy knew what this was going to entail at the time. However, Greg, Eric, and Jeff worked speedily and efficiently knowing that Gordy was about to begin treatment on April 22nd. When we returned from our first all-day chemo/radiation combination on Friday, April 23rd, the kitchen was complete. We also had other things done to the family room including new carpeting and painting. When people who worked on the project said things would get done, they were completed. Everyone was fantastic and helpful.

It is now my "go to" place. As Frank Costanza said in a Seinfeld episode, "Serenity Now." Gordy basically is upstairs hooked up to his electric pump/feeding apparatus and is trying to regain strength and get rid of his pain. The first floor is calming for me. I've set up my laptop on the kitchen table because we don't share meals at this time. I look out my window and see the lush green trees and grass. When I relax in the family room, the pots of flowers and my blue hydrangea plant bloom near the deck. The photo above is just one of the beautiful blue flowers. A deer regularly crosses our yard to get to the woods north of us. All of these things are comforting. So many things are out of our control but I feel a bit of serenity at my home.

Confessions of a Caregiver
Dairy Queen: my brother Paul and his wife Marsha gave Gordy a gift certificate to the Dairy Queen. At one point, this was one of the only things Gordy liked eating. My confession? I am now using the certificate.

Ugly cry: for the most part, I am pretty stoic and steadfast during Gord's treatment. However, I had about an hour of what I call an ugly cry Saturday night. Thanks, Monill, for listening.

Relaxation: my children and friends have given me bubble bath, lotions, cremes, and French soap and taking a luxurious and long bath is wonderful during these stressful times.

Iowa: I calculated that I drove Gordy and me to Burlington around 25 times. I had about 4 different routes over the countryside. The corn, calves, colts grew over the 7 weeks. Beautiful flowers bloomed along the routes. Even though we are relieved not to drive five days a week, it served a purpose every morning. I had to concentrate on my driving and getting there. It kept my mind off of the immediate issue--Gordy's cancer.

Vitamins: I always took my vitamins and I've been so engrossed in Gordy's meds that I have forgotten too many times. I am reminded to maintain my physical health.

Soup: dear friends made delicious soups for Gordy when he was going through his "I can only eat soup" phase before treatment. Quite a few containers are in my freezer. Gord cannot eat them now but I'm not waiting for him to taste them. I'm confessing: I am eating his soup.

Gordy's help: I've always known that Gord has been a tremendous help around the house and our yard. Now I know for sure all that he did because I'm trying to pick up the slack. I appreciate all that he did more than ever.

Tired: I go to bed almost as early as he does. Yes, we are both in our "rooms" watching our own tvs, but I can safely say that I'm upstairs pretty darn early. The mental strain and stress contribute to my physical tiredness. Bedtime at our house is 9 p.m.

Wine: Drink the good stuff! I'm not exactly a discriminating wine drinker but we visited the Napa Valley in September and after tasting white wine at one vineyard, I really liked it. But it is more expensive than my usual purchases. Now I open the wine and treat myself to the "good stuff." It is from V Sattui Winery and it called Semillon which is a lighter version of Savignon Blanc which is also very good! It has to be ordered but well worth it.


The Bible: I asked our associate pastor about specific passages in the Bible that may address what we are experiencing. Pastor Becky brought over a book that has helped. Under a heading called Trials and Tribulations a quote from the book of James (our two-year old grandson's name), it says "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." I have always liked the Parable of the Good Samaritan which is found in the book of Luke (our six-year old grandson's name). Reading the book of Luke has been comforting.

Cereal: I do like cereal. Anyone else have it for dinner? It is quick and easy and tastes pretty good. I bet other caregivers have had interesting and unusual foods for dinner.

Norm from Cheers: Remember when Norm entered Cheers and everyone would shout out his name and say Hi? Now when I walk into Ford Hopkins Pharmacy to pick up the many, many prescriptions for Gordy, everyone calls out my name because I'm there so much! You gotta love a small town.

When I confessed to my sister about having the ugly cry Saturday night and also the frustration I have with Gordy still feeling intense pain and the inability to talk clearly (hey, I may regret the talk wish) and his overall very slow recovery at this time, she sent me the following the quote:

The will of God will never take you where the Grace of God will not protect you.

I'll close for now and soon you'll be reading another blog entry from Gordy. Time for my bubble bath!

Melancholy with a Capital M

Today was indeed the end of formal treatments as number 35 of radiation in seven weeks is in the books. I have resigned myself to riding in the backseat the past couple of weeks in order to minimize my nausea. Coach Patterson took me over on Tuesday in a driving rain storm. We looked like a couple of old grizzled combat veterans on a "mission" to Burlington. I thought today would be different,sort of like euphoria surrounding my persona, but that was not to be the case. When I entered the radiation room for the last time, I actually thought I might heave but somehow I kept things under control. I have a little phlebitis on my two forearms from the IV insertions when I was in the hospital. Dr. El-Khoury said not to worry and that I was on target. I treat them, or should I say Diane, with warm moist compresses four times a day--add this to our list of activities and meds Diane keeps track of daily.

At the end of our visit with Dr. El-Khoury, he mentioned the PET-scan will be done in about 12-14 weeks. At that time, we will find out if there are any active cancer cells in my body.

As the photos above show, upon our departure we were met by David and Gretchen Miller who have been there from the beginning in Florida. I felt horrible but as they were hugging Diane and giving her a bottle of champagne for consumption when I am better, I found myself hiding behind cars attempting to throw up when I had nothing to throw up. These are embarrassing moments but they come with the territory. From the fine folks at the Cancer Center, they gave me "my mask" and a "comfort blanket" for the journey ahead.

I have been warned throughout that the worst is yet to come over the next couple of weeks in terms of fatigue and general malaise. Folks, that time has arrived. My attitude remains positive but I just have no zip. And damn it, my throat HURTS. This all will pass, and I look forward to waking up tomorrow without a trip to Burlington. Hopefully, I can begin to ingest a bit more "product" in order to gain weight and strength. Within the next 10 days or so, my goal is to actually take in something orally.

There's no doubt about it. I'm losing some of my hair--mostly in the back where the radiation was directed. Not sure if it will grow back. Taste buds are shot now but may come back in 4-6 weeks--the same with salivary glands. So now the time has come to recover, and that will be done in baby steps, but let us assure you it will be done as this is no way to live one's life. As I've said from the onset, the diagnosis sucks, treatment is difficult, but the prognosis is bright. Today marks a new beginning. And as Jackie Gleason would say, "and a way we go."

The Home Stretch/The Countdown Begins

The snappy white leggings are to prevent blood clots while in hospital beds. The "crew" of 4 are taking me to the radiation treatment. Thanks to Diane's sister, Ruthie, who told her how to download photos from her cell.

On Wednesday it was decided that I needed to stay another night in the hospital. This was a no-brainer as I could ill afford to get to Macomb and begin the vomiting cycle again plus the antibiotics had not worked completely as yet. Radiation treatments continued.

Let me change formats here as there is more good news to report than bad.

BAD:

1. I continue to be "on the edge" of vomiting but have not done so since Thursday morning. This was pretty scary as I had completed radiation, then dismissed from the hospital, and was literally on my way out the door when I had to throw up. Unfortunately for me or fortunately as the case may be, staffers saw my plight and told me I was going nowhere except to see Dr. El-Khoury. I just didn't want to stay in the hospital another night, and this wave of nausea passed quickly so we were off to Macomb.

2. I wake up in the morning and there is a 20-minute period where I have to get myself psychologically prepared not to throw up. Today is Monday--so far so good.

3. My throat stills burns but get this--it is better. Pain is at a 6 or 7 and no longer a 9 out of 10.

4. My weight is 159 and dropping like a rock as I can only consume 4 cans of product a day which is now being done through an electronic drip machine. I actually use it while sleeping at night.

5. I sleep in the car on the way over and back to Burlington. All of these little steps backwards are irritating but to be expected because in the aggregate things are much improved.

6. Deny it as I might, my shower drain is somehow full of hair every time I shower. I do not know how long or severe this situation will endure.

7. I rarely speak these days. I will not comment further on this predicament as the breadth of reactions to my situation from those reading this blog is probably pretty wide. Truth be told: Diane wishes I could speak more clearly as even she finds it difficult to understand me.


GOOD:

1. I am sleeping through the night. This is good on every level. I'm sure it is a combination of the morphine patch, vicidin, phenergan, and attavan but this treatment should be short-lived. As soon as possible, Dr. Diane will need to wean me of these drugs one at a time.

2. While mentioned above, it is worth writing again. I have not thrown up since Thursday at 10 a.m.

3. My last three radiation treatments are this Tuesday, Wednesday, and Thursday. That means to date, I've had 5 chemo days and completed 32 radiation blasts.

4. While every day presents new challenges, we are learning how to cope with them as they come our way.

5. Both boys visited this weekend. It is good for Diane as she gets to have some quality time with her sons and I get to visit with a couple of my best buddies.

6. A common theme of the messages I receive from you is that you are encouraged by what happens between life partners during a time like this in terms of the support they provide one another. This is absolutely correct. Everyone I've talked to who has been through a similar challenge says they couldn't have done it without the love and support of those who care about them. Rough around the edges Gordy Taylor would concur. I am indeed blessed.

7. GO BLACKHAWKS!!! I've always loved hockey and the Hawks. When I was in high school, I had season tickets in 1963-64. I can tell you the name and number of every player on that team. If pressed, I could also tell you how many teeth each of those guys has left. Tucked away in the basement, I have my ticket stubs. Chicago Stadium, 16,666 every night. Oh my God, an epiphany, here's where I got this damn cancer--as a poor high school student, I could only afford seats in the second balcony which by the third period was surrounded by a thick cloud of smoke rising up from the expensive seats below. A mystery solved.

We are off to West Burlington tomorrow morning. And so it goes......

Back in the Hospital (Saddle) Again

Monday night vomiting resulted in a second hospital admission. I was not happy about this but it was clearly necessary as I was again dehydrated, my white cell count was low, and I had a temperature of 101.5. It appeared that there was an infection somewhere so I had two cultures through blood work up to find the location. Because of possible contamination, I was in semi-isolation which means everyone coming into my room had to wear a mask and yellow gown.

After radiation, I was wheeled over to the hospital and admitted at noon. Unfortunately, I received no medications until 4 p.m. I had the IV needle but no meds. This was the first time Diane and I got a little abrupt and fluids started flowing at 4:05. Diane left about 5 p.m., and I had another long night which while are no fun but this is par for the course. I had a rather surreal moment. In my dream, long-time and I mean long-time friends Ted Mowery and Dan Ross came to visit me separately in my room about how I lived my life. Oh my God, I thought, is this the end? Is this my Scrooge moment? And then I woke up. Oh yea, I was in a deep sweat.

Dr. El-Khoury and I visited at 7:30 a.m. today, and he decided no more chemo for me. My mouth is shot. I cannot begin to describe the pain in my throat so I won't even try. Diane arrived at 8:30 and it was radiation at 9:45. The staff wheeled me to the Cancer Care Center which is at the other end of this complex. It was quite a site because I had to have all the bags for the IV with me. Diane took a photo--hopefully in the future I'll post it here. Dr. McGinnis said he would not stop radiation treatment unless I was literally on my death bed. As he said, "there is no turning back now. This is one chance to take care of this so we have to press forward in spite of the adversity." I did manage with Diane's help to take a shower, and I am now resting comfortably in bed.

Great River Medical Center has wireless capability. Diane brought her laptop yesterday so she is sitting next to my hospital bed typing this while I try to whisper the words for the blog. Hopefully we will head to Macomb after radiation tomorrow morning at 9:30.

For those of you lucky enough never to have had to face the fear, pain, anxiety, and mental distress that comes with a potentially terminal illness, I pray that none of you ever does. To those of you who have preceded me on your own similar journey, I wish you continued good health. And to those of you who may face your own crucible in the future, know that the Taylors are only a phone call away.

Ground Hogs Day and Prepare for Change

After getting the electric-powered gravity feeding machine on Friday afternoon thanks to the medical support staff, we both felt that this was the answer to the nausea and vomiting. The slow drip of liquid product into PEG would possibly deter the full feeling. Friday night beginning around 7 p.m., we started the machine with a gravity plastic bag filled with four cans of a new type of product. Each can is 250 ml for a total of 1000 ml over 12 hours. Sounded like a plan--anything to help.

I am trying to walk in Gordy's shoes right now. I still can't even get my mind wrapped around the concept, and I'm living with him. Probably Coach Patterson and Maury Coats know exactly how Gordy is doing physically and mentally. Maury also had base of tongue cancer and is a survivor. Even though we've never met him, Gordy has talked to him and they exchange emails. He is friends with a couple in Macomb.

Even though it is June 1st, Gordy and I feel like we are participants in the film Ground Hogs Day. Every day now is the same. We usually love structure and schedules. Now we have to follow one for Gordy's survival. People ask me what I'm doing for myself. Right now--my purpose is to help Gordy through this. I may have an hour or two, but I don't feel comfortable leaving him. His situation is too tenuous.

Because we're dealing with so many meds, I started a weekend schedule I follow as his caregiver. Give or take 30 minutes or so, the following is what transpires on days we are not travelling to CCC:

6 a.m. Machine beep sounds, the all-night feeding/drip ends
6:30 Gordy rinses mouth/tries to clear throat of saliva and yellow mucous
7:00 2 tsp. of liquid Vicodin through PEG--falls back to sleep
8:45 Lorazepam concentrate through dropper in PEG, water flush before and after all meds through PEG. Phenergan suppository for nausea and vomiting--these two meds are refrigerated.
9:15 Sleep/Rest
10:00 Shower
noon Vicodin and 2 cans of 300 calories each of product. 500 ml total through the electric pump at 100 ml per hour. The pump is plugged in--no batteries--so Gordy basically is in bed during this time.
1:45 Tries to use "Magic Mouthwash" prescription which contains Lydocaine. This is somewhat a touch and go procedure because of the nausea.
2:45 Suppository and Lorazepam
4:00 Vicodin through PEG
5:00 End of two cans of "product" through the machine, rests for a while
7:00 Another try of Magic Mouthwash. Set up 4 cans of product for all-night drip feeding. This time we set it for 80 ml per hour. Gordy is in bed for the night at this time.
9:00 Tries to sleep for the night. Vicodin, Phenergan, and Lorazepan are given one last time.

Gord also has a morphine patch on his chest which must be changed every 72 hours. His world has gotten a lot smaller since last Wednesday. I usually retreat to the first floor but check on him almost every hour. If he needs me, he rings a bell someone had given me when I was recovering from surgery years ago. I'm so glad I kept it!!

We both felt pretty darn good about our Ground Hog Day existence until last night. Yep, the vomiting began which is horrible. He's hooked up through PEG to the machine but needs to make it out of bed to get to the bathroom. We are both depressed that this is happening.

I'm driving Gordy this morning to Iowa and hopefully will get some answers or directions concerning what our next steps are to help him through the treatment. This is not for the faint hearted. This is not for wimps. This demands strength, tenacity, and fortitude. We are not backing down even though it is frustrating and depressing about the return of vomiting. We continue to hang on to the fact that the prognosis is good for base of tongue cancer. Dr. McGinnis explained to us before treatment began that through radiation and chemotherapy in 7 weeks, "we will push you towards the edge of a cliff--you may not think you can go on--and then we will slowly pull you back from that edge." Well, folks, I believe we are at the edge.

Keep those blog comments, letters, emails, cards, notes, and calls coming. You lift us up with your support. Some have inquired about how to post on the blog. I believe you sign up through Google which is located above the followers' photos on the first page--not sure about this. Please keep praying and thinking good thoughts for Team Taylor.