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For first time readers...my journey begins here: THE VERY FIRST BLOG POST (CC1)

Meaning of life

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

Friday, March 20, 2009

The Cancer Chronicles 34


part 3

After my long walk with nature, I grew so tired. I needed to return to the cottage for a nap. I think the walking had weakened my body, but the solitude of such a wondrous day filled my soul.

I napped on the couch for a bit when I felt a breeze kick up through the open screened door. A gentle rain shower began. Once again, like a calling card in my life, a rainbow appeared hovering over Lake Huron, I was to pay attention to. It rained briefly over the gloomy grey sky. The glorious sunshine of the day was gone and a new attitude was in the air.

Rainbow over Lake Huron seen from the cottage balcony, Harrisville, MI
Craig and Aaron returned and mentioned that they were going back to the camp ground to meet some fellow barbershoppers. So, that evening, as tired as I was, I prepared to make the gathering. Gloria would stay at the cottage to rest.

We set off to buy some wood for a campfire and drove to the park. The camp ground seemed completely full, even though all the events were a week away. We found Craig's friends, Pete and Sally Burns, in their 40 foot luxury motor home backed up to a wooded area. Down a short path, beyond the woods, you'd found yourself on the sandy beach of Lake Huron. It was one of the best locations in the park with its own fire pit. Now this is how camping should be! All the luxuries of home with all the benefits of nature.

After the introductions we sparked up the fire pit and began to talk. It wasn't long before food was being discussed. Hot dogs were on the menu. DAMN! I wanted one so bad! When I bowed out of the dog tally, I had to explain the reason why. As it turned out Sally was a breast cancer survivor, so we instantly bonded. Cancer is like a club and sometimes only other cancer survivors can fully understand. As more than one conversation dominated the fire pit, Sally and I exchanged war stories. She told me about "the girls" (her breasts) how they were re-built, and I told of my battled tongue and how they fashioned a new one out of my forearm.

She asked to see my tongue and I said, "Only if I can see the girls." In a serious tone I heard her husband say, "Go ahead honey, show him." I froze for a moment before I realized he was joking. I quickly changed the subject to singing. Both Sally and Pete are in quartets. Some people might think singing barbershop tags is only for men, but Sally is a member of the Sweet Adelines International Singers , a group for woman.

They broke out the dogs and I just wanted to devourer one. Aaron was a bit hesitant about having a hot dog cooked over an open fire. He had never had a weenie roast. The thought of skewering a hot dog and roasting it yourself over an open fire did not sound appetizing to him. After much prodding, he agreed to try one. I don't think he wanted to step out of his comfort zone. The flames danced before me as I watched those dogs smolder and char.

I was mesmerized by the flames and sadden by the fact that I could not partake in the ritual. I kept thinking, "I want one, just one bite with ketchup, mustard, and fresh diced onions!" But, I knew it would be too difficult to try in front of strangers. I'd probably embarrass myself or gross them out if I had to use my fingers to maneuver the food. So, when one of the first dogs out of the flames was offered to me, I gracefully declined with a tear. I'm sure that was the smoke from the fire that caused that...right??

I lived vicariously through Aaron that night. As he reluctantly took a bite into his first campfire dog, his face went from, "I'm not too sure about this," to "WOW! This is AWESOME!" He wolfed that dog down and fired up a second without hesitation. I think part of me was jealous. He didn't realize what a gift that was, but the enjoyment plastered on his face was worth watching. I hoped I would soon enjoy my first post cancer hot dog as he did that night. I only wish we could have shared the experience together.

The night air was fresh and crisp after the brief afternoon rain. Tiny drops of water sat silently on tree leaves that surrounded us. The campground grew dark and quiet, with bright stars dancing overhead. Only the flicker of flames and a light from the motor home lit up our surroundings.

As the evening went on, another group of friends walked by. The daughter of this couple, Diane was a Girl Scout. Not just any Girl Scout, but a Gold Award Winning Girl Scout, the highest honor given. So, when she offered to make everyone s'mores, I about packed it in! DAMMIT! I can't eat the hot dogs and now s'mores!!! Made by one of the highest ranking Girl Scouts on the planet!!! OK, I had my day at the beach and my rainbow. I guess I can't have my cake and eat it too.

I watched Diane exactingly build each s'more after carefully roasting her marshmallows to perfection. She stacked a honey graham cracker, a big square chunk of chocolate Hersey bar, the gooey, melting marshmallow, all topped off with another graham cracker, then squished to perfection! The aroma was heavenly as the chocolate square melted gently under the warmth of the roasted sweet white fluff. Everyone but me enjoyed Diane's spectacular treat. I now know how a dog feels when he begs at the table for food and doesn't get any!

Happy and full, the group began singing tags in four part A Capella harmony. Craig asked if I wanted to sing along and they would teach me a tag. But, just like the dogs and the s'mores, that was out of the question for me this evening. Craig and I were once in Choir together, rivals for first chair of the second tenor section, so he knew I could belt out a tune. But after being sliced, diced, micro-waved, and poisoned, my vocal prowess was not what it once was. I was beginning to realize how hard it will be to be in a social environment having had tongue cancer. I was not able to enjoy a simple evening the same way as the others. A part of me is lost, and I don't just mean my tongue.

Was this the way it would be for the rest of my life? With that thought, the harmony was interrupted by security, asking us to keep it down. The loud talking, laughing, and singing was disturbing the other campers. What??? Are we the only ones that know how to have a good time??? Old Farts!

As entertaining as it was, I felt a bit depressed. Just another revelation; an understanding that there are such major highs and lows when you have cancer. How can a tongue affect so much of one's life? Even when everything seems perfect to the outside world, life as I know it has changed. After all, how could anyone NOT have a good time on an evening like this, right??? If you could only get inside my head you'd understand. I did enjoy myself very much, but I knew it could be so much better if I was able to eat, speak clearer, and sing along with the gang. I kept my game face on and enjoyed the evening the best I could, but sadness loomed inside my head.

The singing ceased and the talking softened with only spikes of laughter. The embers before us glowed softly as the night was coming to an end. It was getting late and after security had to issue us a second warning, the evening lost it's momentum. We said our good-byes and I gave my new cancer buddy a deep hug. Sally was living well after having both breasts removed and that was the lesson I would take with me. Cancer did not stop her from living and it won't stop me!

We drove back to the cottage to sleep and sleep hard I did. When morning ...ah afternoon came, I called my Aunt and Uncle to see if they would be up for company. Yep, I'm in town and I'll be there in a hour!

I gave Gloria a deep hug and jumped in the car for the short drive. Gloria is another cancer warrior. She just keeps going with such a great attitude. I really respect the way she lives with her cancer! More positive reinforcement that you just gotta keep livin!

When I reached East Tawas, it was beautiful. My aunt and uncle live near the Marina across the street from the lake. I had planned on only staying a few hours, but with my late start it seemed best to spend the night so we would have more time to catch up. My Aunt and Uncle also both had cancer. It seemed to be a theme for this trip.

I called my mom to check on her. She was doing well and sounded great. I asked if she needed me because I wanted to spend the night in East Tawas. Mom said she was fine and that she'd see me tomorrow afternoon. After all, she had a team of nurses and caregivers in and out of the house daily.

I broke out my feed bag, which is always a bit of a shock for new people being exposed to a man hooked up to a IV pole with a bag of liquid for dinner. They so graciously acted as if this was normal and the conversation went on late into the night.

Morning came again quickly. I wasn't up 15 minutes when my cell phone rang. It was my mom's neighbor. They had taken her to the hospital. She had fallen sometime during the night, flipped over her potty chair around 3 AM and laid on the floor until 10 AM. When my cousins came by for a visit and couldn't get mom to answer the door, they knew something was wrong.

Well a hurried good-bye ensued and I hit the road, driving directly to the hospital, ridden with guilt. I should have driven home last night! When I found out she was fine, just bruised up a bit, I was relieved. Then when she told me she had gotten up to go to the bathroom with only the aid of a small nightlight. She apparently either tripped over her oxygen cord or misjudged the portable commode as she sat down. Mom found the whole thing funny, as she described the ordeal with the commode flying through the air and landing upside down as she fell flat on the floor and laid there for seven hours or more. Again, I blame all the pain meds and her lack of judgement by not turning on a light! I wasn't amused.

She wasn't hurt badly, but the doctors suggested more rehab as they thought it would help her gain more strength in her legs. They also wanted to work on some physical therapy for the arm she fractured months ago that put her in the hospital the last time.

So much for coming to help mom, she would be in rehab for several months so, I planned my trip home and registered the event under...F&*#! I still think all those pain meds played a key factor. I know she needs some, but not all that she was taking. I'm not a doctor, but I know when someone is stoned!

This whole trip had taken every ounce of my energy. Mom was only home five days before she ended back in the hospital. I think they released her from rehab way too soon! On the long plane ride home I tried to sleep. Too much on my mind. So many people living with illness, but all warriors to me. I had pushed myself past my limit. Upon returning home, I stayed in bed for three weeks trying to regain my energy. I couldn't lift my head off the pillow. Now you know why it took so long to finish this post.

Life isn't always a pic-a-nic basket, eh Boo Boo?


Sharifahsya said...

Hello Dr. Swill,

I can sure understand your feeling about not being able to gobble on that hot dog. I am also a tongue cancer survivor and had a total glossectomy last year. I am now surviving on liquid food also taken through a stomach tube.

Hope you are feeling better now.


Anonymous said...

Dr Swill, This is Bob from "The Latest from Brandon" blog and also a tongue cancer survivor. I've read with interest how you've articulated the thought of "losing more than a tongue". So true and insightful....understand that all too well!!

Thanks for your recent comment and posting on the Erbitux drug. I'm participating in a trial with 500 mg every two weeks....so far I have a Level I reaction and very manageable...(the other half of the trial are on 750 mg every two weeks).

Are you taking any food orally? Or everything by tube? I can use protein whey shakes which provide 1000 calories. If you're able to drink I recommend them....I add canned fruit or bananas to the different flavors available. Still rely on 2 cans of Nutrin a day to "round out" the diet.

Thanks for the insight.


Bob Pemberton

Words To Live By:

"The best way to find yourself is to lose yourself in the service to others." -Mahatma Gandhi