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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, June 19, 2009

The Cancer Chronicles 39

I'm In The Army Now!

As I ascended upon Houston Wednesday, my one goal was to have a fantastic dinner. It would be the only day I’m free to do so. Thursday and Friday are packed with appointments and travel. My very favorite Houston restaurant came to mind: Pappadeaux, with its own New Orleans French Quarter fla-va and hot jazz playing in the background to fill your tender ears. If you haven’t tried it, it is a must. Remember, this recommendation is coming from a man with ½ a tongue!

After arriving at the hotel and getting my bearings I found the nearest Pappadeaux, located at 2525 South Loop West, in Houston, only a short 4 block walk from the hotel. I called a cab! WHAT? You think I’m gonna walk that far?

It was 5 PM local time and the place was packed. I had a 20 minute wait that early in the evening. I’m not sure what their profit margin is, but the place looks like a gold mine to me! I’m a very picky connoisseur of restaurants having spent 20 years in the field. I know good food and good service! The General Manager is Zach, but tell the Night Manager, Brian (we’re everywhere!) that “Brian the tongueless cancer guy sent ya!”

I could already taste what I would savor for dinner. I shall begin with a bowl Lobster Bisque Soup, loaded with large dime size chunks of Lobster. Then bring on a Creole Crab Cake in a capered butter sauce swimming with New Orleans Crawfish. I know I had crab cake for lunch. Ya gotta problem with that? Not me! For dinner, ½ pound of freshly steamed King Crab resting over a bed of pasta. Accompanying the crab was a small candle lit Jacuzzi, filled with melted butter. Time for your bath boys! H-E-A-V-E-N!

With gas lights illuminating the packed house and soft jazz dancing in my ears, the meal was unforgettable. I didn’t finish until after 8 PM, because it takes so much longer for me to eat, but that didn’t stop me from enjoying each tasty "little" morsel. I was so full, I looked pregnant!

I had to get to bed. The morning would come quickly and I had a lot on my plate tomorrow. The kind of stuff you can’t eat! After such a relaxing flight and a jazz filled dining experience, I rolled into bed and mentally prepared for my 10 hour day of tests, scans, needles, and radioactive fillers.

BUZZZZZ and there’s the alarm! Off I go to MDA. Stay positive, stay strong, ah…stay awake! I’m so tired this morning. I catch the shuttle and arrive on time. First stop, blood draw. Last time this was done, they had trouble getting a good vein. The chemo tends to mess with them. Today I’m told I have good veins! Wow! That’s great news! Who ever thought I’d be excited about veins?


After a short wait I’m called for my X-Rays. Wonder if I have good lungs? Strip to your waist, don a hospital scrub and find an X-Ray machine to love. I’m sure many of you have been through this, but it always reminds me of elementary school when you finally get a girlfriend and your friends egg you on to hug and kiss her.

It’s awkward, as I hear the tech say, “Closer, chest flat to the screen…clo-ser. (He pushes me forward a bit, straightens out my hips.) Now reach around the back with your shoulders placed firmly against the machine and grab on to those handles. Place your chin in the space above.” This is getting pretty intimate…dude I didn’t bring any condoms!

APPLAUSE… now everyone reach for a cigarette! OK, I DO NOT condone smoking, but you get the idea.

I don’t have another exam until 4 o’clock. I figured I’d could go early and get the CT scans over with, but no, they would not take me early and suggested I have lunch. Got no problem with that one!!!

When you’re scheduled for CT scans, you’re instructed not to eat 3 hours prior. I’m closer to 4, so I’ll head to the MDA cafeteria. There is a great spread here. They have a Smoke House station with BBQ Chicken and Ribs, a Pizza station, an Asian stir-fry station, a Pasta station, a Home Cooked Meal station with meatloaf, mashed potatoes, and soups, a Grill station for the burger lover, a well stocked salad bar, sold by the pound, and a Chick-fil-A (Huh? What’s that doing here???)

Out of all to choose from, I thought a well dressed salad would be best after making a pig out of myself at Pappadeaux! I grab for the fresh baby spinach, add some romaine, red onions, black olives, carrots, broccoli, a helping of cheddar cheese, garnished with grilled chicken…Two all beef patties, special sauce, lettuce, cheese, pickles, onions, on a sesame bun! Just kidding…no bun.

This will be my only meal today. It turned out to be a one and a half pound salad after drenching it with Ken’s Ranch Dressing. The dressing is a little on the thin side, Hidden Valley is thicker and preferable to me. Not that I’m that picky at this stage in my cancer career! Maybe I’ll become a restaurant critic.

A peaceful resting place

After allowing my stomach some time off, I return for my CT scans. I’m mentally prepared. This scan isn’t the rough one. The MRI after the CT is the problem for me. If you read the post about my first MRI, you’d understand.

I fill out the paperwork answering all the standard background questions. The very last one: “Is there anything we could do to make this experience better for you?” LOL… I wrote, “Yes, find someone to take the exam for me!” Well??? They asked@! Besides, that's a dumb question to ask BEFORE your exam.

About 20 minutes before I’m called to have an IV line placed in my arm, my phone rings. It’s mom’s neighbor. “I’m not supposed to tell you, but…your mother’s levels are off and her room is too warm. The nurse thinks it affects her breathing.”

Oh my God! What levels? What’s wrong? Her doctor added another diuretic this week because she was retaining too much water. I was aware of that. What “Levels?” All I got was, “I’m not sure, just her levels are off.” Now what am I suppose to do with that information at this moment?

PEOPLE! If you are ever faced with calling a cancer patient regarding their mother, knowing they are having a battery of tests done that day…DO NOT CALL, unless it’s an absolute emergency and then, second guess yourself! There is NOTHING that can be done thousands of miles away with an IV stuck in my arm, but worry!

ZING!!!! SPLAT!!! SHIT!! STRESS! Up went the blood pressure. Of course I had to call mom. She explained, “Everything is fine, just having another bad day.” I ask, “Is your room too hot? You do know how to use the thermostat, right?” “Yes,” she replies, “I don’t like it too cold; it’s bad for my arthritis.”

This is nothing new for mom; she’s lived with bad days for years. Many elderly do. She has a nurse that comes to the house and a caregiver to bathe and do some housekeeping along with a machine that wakes her up every morning and makes her monitor her blood pressure, oxygen level (O2 sat.), and weight, checking for water retention due to her COPD and CHF (Congestive Heart Failure.) Then the machine asks a series of questions about how she feels and if her doctor has recently changed any of her meds. This information gets transmitted back to a nurse’s station daily and reviewed.

Mom is well monitored and cared for. The water gain might land her in the hospital, if the diuretic fails to accomplish its goal, but it’s not the first time. This is just another day in mom’s long history with her medical issues. To be fair to the neighbor, I love her dearly, and this obviously new to her, but when you’re as sick and old as mom is…well it’s just another day. She’s lived over 80 years and smoked for almost 70. This is her payment and she’s taking it very well, I think.

I called the nurse to be safe. I was told mom is having difficulty with water retention and breathing. Mom has a tendency to skip a few of the doctor ordered 4 a day breathing treatments. Another price paid for being lazy.

Now back to our regularly scheduled program...

I’m seated in a comfy chair as a kind nurse places an IV line into my right arm. Once again I hear, “You’ve got good veins.” Could it be because my blood pressure is up at the moment!?

Bio-weapon "ARMED" and ready, SIR!

I wait to be called in a room with others prepping for their exams, mostly consisting of the lower extremities. Not the cramming you’d do to pass a calc. exam. More like: drink this barium crap that tastes like chalky shit and wait for the 30 minutes, then drink some more! CHUG! CHUG! CHUG! I guess it’s more like a college drinking game in the fact that you’re not alone. The main difference is…nobody cares about winning this game. Just get it the hell over with!

Fortunately, my CT exam is of the head and neck and I only have to watch the drinking game. I feel lucky because I get the warm and fuzzy exam that makes you feel like you have happy sunshine running through your veins, just before you get the sensation you're about to wet your pants! (Read about my first MRI in  The Cancer Chronicles 2 and The Cancer Chronicles 3) The radioactive iodine used for contrast gives this feeling when injected. It’s primarily used to enhance and outline blood vessels or highlight soft tissues or organs in the body, so that they can be seen more easily.

A few hours after arriving to the college frat party, I’m off to the next, being the party animal that I am today. I’m still attired in my hospital scrubs with my IV line intact, ready for my next adventure. What a site…MRI’s here I come!

My MRI is scheduled in another building, still part of MD Anderson. This one is for my back and lower lumbar. As always, a wait. I check my mail and blog with a few friends to try to relax. I’m so nervous about this one. It’s like being placed in a coffin for two hours and forced to hear all kinds of loud, obnoxious sounds.

The last time I had an MRI, I was in the process of first being diagnosed and it was a grueling procedure. The only thing that made it bearable was the music from the headphones. Some people opt for a sedative, which if you’re claustrophobic, I suggest. But, if you are alone they won’t administer one. So, I'm SOL. Until the phone call, I was doing well with my stress. Now…not so good.

The enemy's lair - CLASSIFIED TOP SECRET!

I hear my name and rise to the occasion. They check my IV line, make sure I’m stripped of all metallic objects, and whisk me in to meet my new best friend. Keep your friends close and, your enemies closer! I’ll be in my tomb for two hours. This is no picnic. Small problem, where are my headphones?

“Oh, we don’t have headphones, Sir.”

WHAT?? I SAID…WHAT??? ONE MORE TIME…WHAT??? Big problem! Crap! You expect me to be sentenced to lie still for two hours encased in a tube you can’t budge in and be subjected to the obscene noises it belts out without the distraction of music?

The sweat beads off my brow. Not only am I leaking, it’s hot in here or maybe I’m still flush from the radioactive iodine still swimming in my veins from the last E-Ticket ride. Anybody remember what an E-Ticket is? HINT…Think Disney.

I cannot believe a hospital such as MD Anderson, with their reputation, and money (some of it mine!) can’t take a simple measure to help ensure a patient remain stress free. TWO HOURS! SHIT! Remember the question BEFORE the exam: “Is there anything we could do to make this experience better for you?” HA!

I lay flat, my IV again checked, carefully shrouded in a blanket as if being prepared for my funeral and slowly I enter what will be TWO HOURS OF HELL without music! For me, music has always helped me leave a currently bad situation, and place myself on a beach somewhere having a cocktail with Jimmy Buffett in Margaretville. But not today, there will be no cocktail hour.

As I enter the coffin of doom, the room is warm, I’m told not to move. FOR TWO HOURS! Less than an inch from my nose is the sarcophagus from hell. I’m hot, and oh so tired. I fall asleep for the first half. I awake to a friendly voice, “Now, don’t move. I’m going to inject the dye for the second half of your exam. Don’t move, please!”

Move? Did I move? Is it over? Did we just start? OH, we are half way through it, not so bad.

Fifteen minutes into the second hour, I begin to sweat profusely. Still shrouded in my burial blanket and I can’t move. I feel an eyelash or something ticking at my left eye. My left leg flinches uncontrollably. DON’T MOVE BRIAN! I’m fine! I’m fine! Just turn up the music. I’m fine. SHIT, NO MUSIC! Aw crap! More sweat.

The sounds of my enemy become louder. Bumping and grinding, ratta-tat-tat, machine gun fire, jack hammers. Buzzing…I swear I hear the NBC theme tune, Ding-Dong-Ding. AK-47’s, tank fire, rockets, ratta-tat-tat, BANG! Now, a washing machine out of balance? SMACK! Ding-Dong-Ding (NBC calling.) Ratta-tat-tat!

Legions of little green men army men approach in full force. Mortar fire! "INCOMING!" More bumping! More grinding! BANG!

"Shall we return fire, Sir?" My leg flinches.
"Stay still! Do not move!" More sweat, my nose itches! When the hell is this going to be over?

Dead silence. Thank God! With each silent pause, the technician utters the length of the next scan. “Six minutes, Sir.” Rapid machine gun fire! "Fire in the Hole!@ Run for your lives!" Don’t move Brian! OMG!

Silence...Is it over? “Twelve more minutes, Sir” SHIT! Something about the word “more” sends a quiver down my spine under inspection. I don’t think I can last…PLEASE! Release the bio-weapon!

Silence…Is it over? Check for casualties!
“We are all done, Sir.” What’s with the “we” shit? You just pushed buttons. I won the fucking war!

I emerge from my containment, victorious! Overheated and soaking wet, I bolt like a caged animal, staying long enough to allow the IV to be removed.

It’s now 11 PM. I’ve been here for twelve hours and all the hotel shuttles have stopped running hours ago. Don’t these blood suckers at MDA ever sleep? In the lobby, a very nice security guard calls the Campus Police to take me home, as if I was drinking and driving. Which at this point I think my drinking buddies at the CT had a better party than I.

While I wait for the pokey-man, the security guard introduces himself. He is from India and moved to Houston 25 years ago. He hands me his business card for his second job: “Srinvas Koumounduri – Sitarist” He’s only the second person I’ve ever met that plays a sitar professionally.

As the police arrive, Srinvas opens the door of the van with a slight bow, hands pressed together, palms touching, fingers pointed upwards in front of his chest, and with peaceful respect he whispers, “Namaste.” I reply in traditional fashion, “Namaste.” A fitting end, to a rather stressful day.

Namaste, my friends.

**The origins of “Namaste” are derived from Hinduism and in Nepal. It has multi-religious and cultural meanings:

1. I bow to you.

2. I respect that divinity within you that is also within me.

3. I honor the place in you in which the entire Universe dwells, I honor the place in you which is of Love, of Integrity, of Wisdom and of Peace.

4. All that is best and highest in me greets/salutes all that is best and highest in you.

Wednesday, June 17, 2009

The Cancer Chronicles 38

Fly Me To The Moon!

From the mind of a cancer patient.
Well here we go again. It’s back to MD Anderson for my semi-annual check-up. Any cancer patient will tell you this can be extremely stressful, knowing you’re feeling well, yet tests might prove otherwise.

I always enjoy flying, being among the clouds. It gives me a feeling of invincibility, that “King of the World” feeling. I sit and watch the clouds wisp by, fixated upon the landscape below and the world doesn’t seem so big anymore.

Today, butterflies fill my stomach as I eagerly pray my cancer is still in remission and that I’m still winning this battle.

While in the airport terminal, I await my chariot. I have time enough for lunch. LUNCH! OMG! LUNCH! What a concept: To sit down and enjoy ones self over a meal and relax. There was a time I didn't give this a second thought. But now, having lost my tongue to cancer and not eating for two years, this is a triumph! For lunch: a single Crab Cake with Rémoulade Sauce and ice tea. Just perfect! I am humbled and appreciate every bite. I only wish I could lick the plate!

As I board the plane, I get that feeling like you do when the roller coaster hits its peak and it's about to plummet. “Here we go.” I think to myself. This time, will the cancer be back or will yet another victory be won?

Once in the air, the soft billowy clouds bring peace. A few hours and I’ll be in Houston to bring my worries to a close. Soft drinks are being dispensed and I'm handed pretzels. A little bag of teeny tiny sticks dashed with salt. My heart stops. My breath tightens. "Can I eat these?" I ask myself.

I haven't had pretzels in years. In fact, I really don't like them. So you're probably thinking..he put them down and didn't give them a second thought. BULLSHIT! I snapped open that microscopic bag and proceeded to eat them one little one inch stick at a time. Had they been any bigger, I would have had a problem because they just sucked up my saliva like a sponge!

With a smile on my face, I washed down each stick individually with a swish of water. I felt a tear form in the corner of my right eye. As it slithered down my cheek, the flight attendant asked if I was alright. "Life couldn't be any better right now," I said with a wink, wiping the wetness from my face.

I plugged in my headphones and on pops some of my favorite music pouring into my ears. It’s the big band swing era. The days when huge orchestras and big brass sections concurred the airwaves.

I drift off to a half way place. Not awake, yet not asleep. It begins…more like a hallucination: The music soothes, I’m Singing in the Rain. I’m dressed in a trench coat, proper chapeau, umbrella, and splashing my way down the street kicking at the puddles with my graceful stride. You know, like that famous scene with Gene Kelly.

I’m singing in the rain
Just singing in the rain
What a glorious feeling

I’m happy again
I’m laughing at clouds
So dark up above
‘Cause the sun’s in my heart

And I’m ready for love!

Without a hesitation “I’m Up A Lazy River” feet dangling in the cool refreshing water, fish nibbling at my toes, sun drenched in a bathing suit.

Up the lazy river by the old mill run,
The Lazy, lazy river in the noonday sun,
Linger in the shad of a kind old tree,
Throw away your troubles, dream a dream with me.

YEAH BABY! Sock it to me mama!

From that lazy river I slip into my tuxedo with Frank, the Chairman of the Board. I’m transported weightless, drifting effortlessly, as I sing among the stars. I rest upon a cloud while being drenched in a massive lunar light:

Fly me to the moon
Let me play among the stars
Let me see what spring is like On Jupiter and Mars
In other words, hold my hand
In other words, darling, kiss me

I drift off to sleep on a billowy white cloud, while a little cricket whispers secrets in my ear:
When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind.
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

I'm jolted back to consciousness...

"Ladies and Gentleman, please return your tray tables and seat backs to their full upright position. We will be landing in the Houston area momentarily. Flight attendants, prepare for arrival and cross check."

WOW! What a rush that was…but we just left the ground? I feel like I’ve slept for a week with a song in my heart and a spring in my step!

Tomorrow's the big day!


Wednesday, June 3, 2009

The Cancer Chronicles 37

This Is The Moment!
April marked my two year anniversary of losing my tongue to cancer. My, how time flies when you’re having fun! Since then, I was relying on a feeding tube for all my nutrition. If you are not a regular reader, you will find how grueling it is to live with and the anguish it causes in The Cancer Chronicles archives.

By December 2008, I began eating more solid foods. I returned to MD Anderson for a check up and everything went well. My scans were clean, no sign of the cancer’s return and my doctors were happy with my progress. My speech was becoming clearer and I had an appetite like never before.

In April 2009, TWO YEARS after losing my tongue to cancer, I was able to eat again without the aid of my feeding tube. Foods I was never able to eat post cancer were now being chewed with caution.

I guess you could say, this is my "new normal." I really hate that term. So many cancer patients use it. Nothing in my life has ever been "normal." Besides, what measure do you use to determine normal? THERE IS NO NORMAL! It just is what it is. Life evolves. This is MY evolution. It's not always easy. I still become exhausted. I still have a lot of jaw pain associated with eating. Side effects courtesy of the radiation, I assume. Some foods are still too much work and not worth the effort. What I can eat, I savor every moment!

One evening I was famished. I needed a soft variety of foods. I thought seafood would fit the bill. Ummm...that sounds perfect! It was time to go public with this voracious appetite! I treated myself to Red Lobster and consumed “The Ultimate Feast” consisting of: Fried Shrimp with Tartar Sauce, Snow Crab Legs drenched in butter, Shrimp Scampi swimming in garlic butter, and a Lobster Tail, yes slathered with MORE butter, along with a LOADED baked potato...OK MORE butter, DOUBLE BUTTER DAMMIT, and a salad with a ton of Ranch Dressing, no butter. It took forever to finish.

Just because I can eat again, doesn't mean it's not difficult. I felt like a fat cow and when I finally returned home, I buried my face into TWO pieces of Carrot Cake. I was on a roll and ready to try more difficult foods!

THE ULTIMATE FEAST: I can't believe I ate the whole thing!
My first bowl of popcorn!
I even ate my nuts! I devoured an entire ONE POUND can of Macadamia Nuts in one sitting!

Now, the big question… When does the feeding tube (Mic-Key Button) come out? I asked my doctors in December, but they felt it was too soon. At that time I was still relying on it about 25% of the time. Today, I can eat a full meal that sometimes needs to be modified. There are still difficulties and there probably always will be. Pain and the lack of saliva are my two biggest issues at the moment.

As months passed, with each new food: My first popcorn, my first pizza, my first steak, my first lobster, came a celebration unto itself, a major victory! These milestones I can only liken to a child's first step or first spoken word.
On March 26, I contacted Dr. Clayman’s assistant, Rolando, asking when I could have the tube removed. He was a bit surprised that I still had it, given my progress. Jokingly I said, “I’d take it out myself if I could.” Then seriously he said that it’s not that difficult and if I was not squeamish about it, I could manage it myself.

I knew it wasn’t hard to remove the Mic-Key Button. Parents exchange them for their children that have them, regularly. I just wasn’t sure what you do when you take it out for good. Rolando explained, after it’s removed the hole will slowly close on its own and to keep it clean and covered for a week.

That was all I needed. My Mic-Key has been very good to me, but it was time for it to go! This would be my final victory! That night, I deflated the balloon that held the button in place and removed it from my belly. I can't begin to express the jubilation! If my life were a musical this is the song I would sing at this moment!

I have a complete photo shoot of me removing my tube, but after reviewing it, I thought maybe it wasn’t such a good thing to post. Although a few of my readers have requested to see the removal process, I think showing the final outcome is best.

Immediately after removing the tube, it looks more like a bullet wound!
VICTORY IS MINE!For the moment anyway…

PS Since removing the feeding tube I have gained 11 pounds!!! Go Junk Food!!!


Words To Live By:

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