Part 1
Well it’s been awhile since I’ve posted. I guess we need to play catch-up. I just wanted some time to myself, to pretend life was once again normal without bringing cancer up everyday.
In August my mother was going to be released from yet another rehab visit. If you remember, she had fallen and broken a few bones. I haven’t seen her since my operation, over a year and a half ago.
I’ve been feeling stronger, so I figured I’d try to make a trip. I thought it would be fun to surprise her when she was released and take her home personally. So I booked a flight and planned a 3 week visit. I knew it wasn’t going to be easy, but I haven’t been home to Michigan in many years. I was excited at the prospect of seeing my family and friends.
I shocked the heck out of my mom when I entered her dreary, two person, hospital style, rehab cell. I thought she would be in bad shape, from everything I’ve been told, but she really looked good. When she arrived to her home, she went straight to bed. She slept a lot, but seemed to become weaker by the day.
My longtime friend Craig (remember the California vacation?) asked if I wanted to come over for dinner and visit. Venison stew made in a crock pot was on the menu that evening. OMG! MEAT! Sadly I hooked up my feed bag and filled it with my liquid gruel. This would be my meal, as I sat at the end of the table while the rest of the family was served the heavenly scented stew.
I so appreciated how unaffected Craig’s family was when I pulled out my feeding supplies. Nobody blinked an eye. It was like all their house guests brought feed bags and plugged a tube into their bellies. I’ve always asked all my friends to just treat me like they always have and not treat me like I had any illness at all. This night the love was apparent. We’ve always had that unconditional type of friendship and Craig has taught those values to his sons. Craig’s mom, Gloria is the same way and so was his dad. Just good people!
While Craig and Jill (his wife) served dinner, I asked for a piece of meat and a bit of potato. Craig looked at me funny and said, “You can eat that?” I said, “I’m not really sure, but it smells SO good I have to give it a try!” I had to chuckle to myself and think, “Nobody says a word as I connect a feeding tube to my belly, but the minute I ask for a piece of meat on a plate, I get questioned with a strange look.”
There in front of me sat a half dollar size of perfectly seasoned, tenderly cooked venison accompanied by a chunk of potato. As the nutritional gruel sluggishly dripped into my belly via feeding tube, I lifted knife and fork for the first time in a year and a half. The utensils felt foreign in my hands. I cut a small piece off the meaty medallion, gently piercing it with the fork and slowly lifting it to my mouth. This could not have been a more sacred moment. Craig and his family chatted away like any other night at the dinner table while I felt an out of body experience approaching. I was going to eat meat for the first time since my tongue had been surgically severed from its God given location.
The meat slowly entered my mouth, delivered by and instrument that hadn’t crossed my lips in an equal amount of time. This was truly a religious experience for me. Can I do it? Is this really going to happen? Will I have to spit it out? What if I choke? What will it taste like?
A heavenly calm fell over me as the salty sensation graced what remained of my tongue and its foreign replacement. It was out of this world! Extremely difficult to maneuver, but with each slow, grinding chew I felt the flavorful juices flow across my pallet and down my throat. My eyes rolled to the back of head. I began to tear and moan to proclaim how amazing the meat was as I squirmed in an orgasmic motion at the dinner table. It was actually better than an orgasmic experience; it was (indescribable)
As Craig’s boys looked oddly at me, Craig said, “You’re witnessing history here.” And history it was, my history! Screw “One small step for man, one giant leap for mankind” I’m eating meat! It took 30 minutes to complete because I found it to be very difficult to manipulate and chew or maybe I just wanted to savor every last heavenly bite. No matter how I explain the experience, there are no words to describe it. It was so emotionally gratifying with a hint of relief.
If This Were You...
I mean think about it, if this were you, you’ve lost your tongue to cancer. You’ve had your lips ripped apart to stuff your forearm into your mouth in true Frankenstein fashion. You might never speak again. You’ve now been sliced, diced, micro-waved, and poisoned with chemotherapy. You’re destined to have liquid dinners delivered via feeding tube in your belly for the rest of your life. Anything you can taste is altered due to the amount of taste buds that have been ripped from your mouth. Exhaustion looms around every corner. You’ve given up hope and you learn to live with your fate. Over time your speech gets better only due to your extreme hard work and therapy. You’re grateful that you can now communicate better, but you give into the fact that a real meal, other than soups and shakes, will never come to pass. Cancer has stolen your life as you know it. You angrily submit. Depression pounds at your door!
You continue to complain to your doctor that there is too much skin in your mouth from the rebuilding of the tongue flap. Your forearm doesn’t belong in your mouth! Your doctor explains the swelling will eventually go down. You don’t believe that will ever happen. Your depression deepens. The stabbing pain rears its vicious head as you blindly reach for yet another dose of Vicodin, your new best friend, a drug addict in the making. All hope is lost.
A year after surgery you still complain there is too much skin in your mouth due to the reconstruction. FINALLY your doctor concurs there MIGHT be too much skin, but any additional surgery is not without risk. It might make your already garbled speech even worse. DO IT! JUST DO IT! The emotions are unexplainable! Anything has got to be better than this! You don’t care anymore. Fuck it!
Fourteen months after the initial surgery that stole tongue and your soul, a portion of skin is removed from the tongue flap (forearm skin) and you go home to convalesce. You pray the operation did not make things worse as you robotically reach for your best friend to sooth the discomfort. The stabbing pain is diminished and speech becomes a bit clearer in just a few days. (This is the short version of where I’m at emotionally.)
Now, one month after this operation, I sit at the dinner table with one of my best friends from childhood and his family. I’m over my shyness and embarrassment of using my feeding tube and bag in front of others. I’ve given into my new norm and I know this is how I will live for the rest of my life. Then Craig begins to dish out meat and potatoes and I coyly ask for a small bite. Does this give you a slight indication of what my emotions were as that meat danced upon my pallet that night?
As the table was cleared, Craig asked what I wanted to do, and for no reason I can think of I said, “Let’s go bowling!” WHAT WAS I THINKING??? I guess I was so excited and high from spending 30 minutes being able to eat a medallion size piece of meat, I wanted to celebrate and do something out of the ordinary. Mind you I haven’t bowled since I was 17 and I wasn’t good at it then! It never really dawned on me where I would get the energy or the stamina to bowl.
Craig’s son Wayne (20) already had plans that night, a young man with a very active social life. Without any prodding from his parents, he canceled his plans to go bowling with Uncle Brian. I was surprised and it genuinely meant a lot to me. As Craig, Jill, Wayne, and Aaron loaded up the van, I knew I was in trouble when they all brought their own bowling balls and shoes. Now I’m thinking, “What have I done! I can’t bowl! It took all my energy just to finish dinner!”
Playing With My Balls
The bowling alley had a special, a buck a game! So, we paid for a few games and some shoes for me. I searched for a ball as the family settled on which lanes to pick. I started laughing at myself. I couldn’t pick up any of the balls. I was too weak. When I finally found a ball I could lift, the finger holes were too small. They were probably balls for young kids! I settled on one I think was 15 pounds. It was really too heavy (STOP LAUGHING!!!) but, it was the lightest one my fingers would fit into, yet way too heavy for me!
I found the family and we split into two teams. I was very impressed to learn that Aaron (15) had been taking lessons with a bowling coach. I didn’t really care about the scores or winning I was just grateful to be able to get out and feel normal for a change.
It was my turn. This would be the first time I had thrown a ball down the lane in over 30 years. I felt dizzy, weak, and wondered if this really was a good idea. As I made my approach, readying myself to plunge my ball down the narrow path of highly polished wood, I began to worry, “What if I fall down or pass out?”
With that thought, to my right and two lanes over a group of young college age kids began hysterically laughing. My first thought was, “Stop laughing at me!” Then I noticed a big 6 foot, broad shouldered jock of a boy throw his ball and land flat on his ass! God I needed that.
All of my worries faded as I thought, “If he can be a healthy, strong, 20 something jock and still fall on his ass, I have nothing to feel bad about if I do the same thing.” Down the alley I sent my first ball and it slowly found its way into that thing they call…the gutter. The ball returned and history repeated itself as if that’s how the game was played. I just smiled as Jill made fun of me. At least I didn’t fall flat on my ass!
My second round proved to be just as successful as the first, gutter, gutter. Hey, I’m consistent! I was beginning to feel dizzy and was afraid I just might pass out. This really was more than I should be doing, but hey, it was a celebration! I ate meat!! Take that Neil Armstrong!
I hadn’t noticed that while we were playing, Wayne disappeared. He reappeared with a bowling ball in his grasp and presented to me by saying, “Here, try this one, it might be better for you.”
For the second time that night a tear came to my eye. This kid took it upon himself to see my problem, understand it, and make a decision, on his own mind you, and find another ball just to make my night a little easier. He just quietly disappeared and made the presentation without making a big deal. I can’t tell you how much that little gesture meant to me. What an awesome kid. I’m so proud to be his adopted Uncle.
Once again my turn, I prepared myself to maintain my lucky streak and continue with the gutter ball tradition. I picked up the new ball Wayne had presented me with. It was significantly lighter and the finger holes were perfect. I approached the lane and sailed that sucker down the alley expecting the normal resolve, but no, this time I got something they call a strike! That’s right dammit, a strike, and not the last one mind you! All thanks to Wayne and his kind and loving gesture! It wasn’t me after all, it was the ball! (I'm sticking with that) I ended that game with a 98 and the second game with 111. I was pretty happy with that given the fact I haven’t bowled in 30 years and I just jumped off the operating table one month prior battling cancer.
It was a great night, spent with loving family friends. I began to wonder, “If one little piece of meat could lift my spirits that much, what would a whole herd of deer do for me? When is hunting season anyway? I wonder if Caribou Barbie would teach me how to shoot!”
Tune in next time to find out: Why mom ends up back in the hospital, how Brian ends up in a cabin with Gloria the day of HER chemotherapy, and Aaron has his first Weenie roast while Brian meets yet ANOTHER breast cancer survivor at the bonfire.
