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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

Wednesday, June 4, 2008

The Cancer Chronicles 31

LIVE FROM MD ANDERSON
I'M GOING TO DISNEY WORLD!!!

Tuesday - June 3

With only one appointment today, it should be a breeze. I get (another) new feeding tube! Well it's actually a button. After fighting with a second appendage for over a year, it will be banished from my body!

Up again at 5:30 AM to make the shuttle to the hospital for my 7:00 AM appointment in the Diagnostic Imaging Department. I'm excited at the prospect of the new button. I've read up about the Mic-Key Button on the Internet and also some blogs as to their use. One woman had a very detailed website for her young son who has a Mic-Key Button. She's very informed.

With an IV in place for fluids, they roll me into the OR. This time an anesthetic is necessary as the hole they need will be a bit bigger than the original. Just a local shot of Lanacain...well 4 actually to numb the pain. They hurt! Why does giving someone something to ease the pain hurt??? What's up wit dat?

The doctors performed their magic. It was very uncomfortable. Lots of pressure on the abdomen, but fortunately it went fast. When they were finished, I asked about maintenance of the button. I got a generic "No problem, people have these for years."

The button has a balloon that inflates when injected with saline, after it's placed in the stomach. This balloon holds the button in place. I read on that woman's blog that the saline needs to be checked weekly to insure it doesn't leak or fail. The doctor reassured me that would not be necessary and he was unfamiliar with such a procedure. OK sounds good to me.

I also asked why this button was not more widely used at the hospital and was told it was mostly used in pediatrics and they preferred the G tube because "it was easier to place." Hummm easier to place...let me think. An extra 5-10 minutes of work for the doctor for a years worth of freedom and feeling more normal. So, it's easier to place a tube that makes the patient miserable. Lame answer Doc!

The attending doctor handed me a kit containing 2 tubes used to connect to the button for feeding. One tube for a bolus feed (feeding by syringe) and one for gravity feeding (using a bag with an IV pole.) Then I was sent into recovery with a pamphlet for care and usage of my new toy.

As I read, I come across the EXACT same description of how to check the balloon weekly as I had read on the blog for the young boy. WEEKLY the saline solution should be checked using your 6 ml syringe contained in your kit. Hummm I don't have one of those and the doctor said it wasn't necessary. Who do I believe the manufacturer or the doctor? Think Brian, think!

Nurse! Call the doctor from the OR, I have a question! Why don't I have a syringe in my kit and why was I told not to worry about checking the fluid level of the balloon when it says right here in the book to do so??? PEOPLE ALWAYS READ YOUR MATERIAL!!!

I explain what I had read and he seemed a bit perplexed. So...where is my 6 ml syringe? "Oh I threw that out in the operating room," he said. "Well can you get me another one?" I asked.

"You can pick one up at the drug store. I think." he replied. You think? LOL RIGHT. "You threw out my syringe, so you owe me one. Why should I have to buy one?" Realizing the mistake he said, "You're right. I'm sorry." He was VERY apologetic and quickly found me 4 replacements.

I LOVE MY MIC-KEY!!!

PRESS PLAY on the music player below and EVERYBODY SING!
Oh, Mic-Key you're so fine, you're so fine you blow my mind. Hey Mic-Key!


My new BFF - Mr. Mic-Key!
Mic-Key Rocks! Smaller than a dime, this low profile button rests flat on the stomach. It's very comfortable so far. It's freedom for sure. I think the other should be outlawed!!! My dietitian, Denise called to set up an appointment for Friday and I told her how happy I was with my new toy and thanked her for slipping me a Mic-Key!

I'M GOING TO DISNEY WORLD!!!
My Mic-Key Makeover
BEFORE

AFTER

Wednesday - June 4
I was able to sleep in until 7:30 AM! I'm in Dr. Hanasano's office by 9:15 AM to discuss my surgery tomorrow. After he reduces the tongue flap, I might actually be able to eat again! OMG FOOD! I'm foaming at the mouth just thinking of it! Just like Homer Simpson with those spinning eyes..."DONUTS!" Maybe that dear old Mic-Key will just be for looks! Belly jewelry. More or less a conversation piece. I'll point to it and say, " I used to eat with my Mic-Key until Dr. Hanasano invented the tongue."

It seems we agree on everything. He will remove approximate a 1 inch by 1/4 inch sliver of flap that is resting uncomfortably against my molars. He doesn't want to take too much at one time, so if this procedure fails to meet the objective, we still have the option to remove more. He always has such a wonderful staff surrounding him. I'm given a handful of scripts for pain, infection, and to cleanse my mouth after surgery, then released. Great, more co-pays!

Next... to my anesthesia consult to prepare for the surgery. I'm required to have an EKG because it's been over 6 months since my last one. Yep still ticking! Just not lickin!
My blood work looks good. In fact he said, "It's perfect!" We go over the plan for tomorrow, discussing how I will be sedated, what will be done, and what might need to be done due to unforeseen complications. Look...if I die on that table after all this, within days of eating real food again...I will haunt you and everyone in this hospital until you join me for all eternity! And trust me..I'll bring friends! I know lots of dead people! This really should be a simple procedure, only about an hour. I won't go "Thiller" anytime soon.

I have a few hours to break before my CT Scans so back to the hotel to rest. I'm pretending I'm not exhausted! I'm not very good at make-believe anymore.

The rest was too short and I'm now back at the hospital being stuck by a nurse trying to put in a IV line for my CT scan iodine. I have a pretty high tolerance for pain, so when I say "It hurts!" It really does. She's being gentle, but she badly wants this one vein. Like she's ready to cross the finish line. The needle is only 1/4 of the way in and I'm in pain, but she already sees blood flow, so she wants that vein. "It's a good one!' she boasts. She's intent on placing it right in the fold of the elbow, high on the forearm. Too sensitive an area and right at the bend.

"Honey, that hurts." I grunt, teeth clenched. "I'm almost in." she says. "AHH that hurts!" I screamed. I went from being very relaxed and reserved to Linda Blair in the Exorcist. "GET THAT NEEDLE OUT! NOOOOWWW!" The only thing missing was the spinning head. Thirty seconds more and I would have gotten that part down too! A second nurse came to my rescue and we all picked a vein together. Not even a sweat with this one. Damn I need a vacation!

After the horror movie, I went in for my scan. Same as last February. You can read about that in the archives. RECAP: Bed/flat. Donut/UMM donuts. Contrast dye/warm and fuzzy. Same thing as before, only this time it seemed much faster. I guess I'm just getting used to this shit!

I'M EXCITED ABOUT TOMORROW!!! There sure are a lot of highs and lows with cancer. Too extreme! It's 1 AM now and I have to be at the hospital by 8 AM for my new tongue. Wish me luck!

Peace B

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Words To Live By:

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