Binvenidos! Bienvenue! Benvenuto! Willkommen! Aloha! Irashaimasu! ようこそ! Welkom! Selamat datang! ברוכים הבאים! Velkomen! Witajcie! वेलकम Bemvindo! Dobro pozhalovat'! Ласкаво просимо! Mabuhay! أهلا وسهلا! Maeva! Yin dee! Isibingelelo! Croeso! Bine ai venit! Witamy! 歡迎!Maligayang pagdating! Vítejte! ยินดีต้อนรับ Fáilte!
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 13, 2008

The Cancer Chronicles 32

Thursday – June 5

I arrive for surgery with bells on! Pretty much the same ole drill, check-in, get undressed, dress into hospital attire, start an IV, let’s roll! They keep telling me I won’t remember a thing because of the general anesthetic, but I don’t ever remember being wheeled into the OR under general anesthesia. I’m always out like a light before I get there. This time I remember going into the room, being transferred to a very comfortable operating table with lots of blue foam padding.

I was asked to snort up some nasal spray into each nostril, then breath deeply as an oxygen mask was lowered to my face with a very spongy/silicone like rim. As I looked around a bit nervous because I was still awake, I noticed 6, maybe 8 people in the room. More than I would have expected for a simple surgery.

As I was asked to continue to breath deep I heard one of the nurses say, “Mark it 10:13.” I could see the clock and it read 10:20. That was my last memory.

I awoke in the recovery room I think around 4 or 5 PM. I’m not sure of the exact time, I was groggy for awhile. I felt no pain at the time, just sleepy. I remember thinking, “Did I just come out of surgery or am I just going in?” My tongue still felt the same to me.

After about an hour of “recalled recovery” I now realized the surgery was indeed over. WOW that went fast…well fast for me, being passed out! I had a nurse help feed me using my new Mic-Key. He was very kind and helpful, most all of them are. As transportation waited to wheel me off to the observation room, my nurse hooked me up to a new bag of plasma.

I was transported to a private room for observation. When I arrived I had to pee badly. The nurse disconnected the plasma bag attached to a pole on the bed, so I could go to the bathroom. When I came back to my bed the plasma was gone and I never saw that nurse again.

It was 7 PM, shift change, the time communication breaks down amongst the nurses. This day was no different. I asked the new nurse where my plasma bag went. It was brand new. I hadn’t been on it 10 minutes. She did not offer any suggestions, just a simple, “I’ll check for you.”

I fell asleep until 9 PM. I awoke in great pain. I pressed the call button for the nurse and she arrived swiftly. I explained I needed my pain medicine and I enquired again about the plasma. She reviewed my chart and said, “I’ll have to order your pills from the pharmacy.” BUT I’M IN PAIN NOW! “What pills?” I ask. “Your pain medicine and your thyroid medicine.” She replied. “WHAT???? First of all, my pain meds were supposed to be liquid according to my doctor and what thyroid medicine are you talking about?? I don’t have a thyroid problem that I know of!” I snapped. She then said she’d check with the pharmacy and clear this up.

While she cleared it up and never returned, I broke out a bottle of Loratab (liquid Vicodin) that I had brought with me just in case there was a problem. Dr. Hanasano prescribed it for me to take home, but I filled it before my surgery. I had this happen to me on a previous visit and I anguished in pain for four hours while they worked out the problem. That’s criminal! So, I always maintain a back-up plan.

After taking my pain medicine, I fell asleep for a few hours. I woke up hungry, so I prepared my feed bag. As I threw out the empty cans, I found my bag of plasma... in the trash can! Now that just pissed me off! The nurse just threw it away…a FULL bag!

I couldn’t get to the call button fast enough! “I found the plasma!” I told the nurse. She said, “Oh yes the nurse threw it out. It was hep-locked.” HUH?? I don’t know what you’re talking about, but I do know I’m not paying for something that you threw away without any explanations. That’s crap! I really wonder about the training of some of these nurses. I know many are subcontracted. Perhaps that’s why I get the feeling some just don’t care.

How can they get so much wrong with such a simple observation? It turned out THEY needed to be observed. If it wasn’t for me paying attention, I would have been swallowing pills with a raw tongue, and given thyroid medicine for a problem I didn’t have! As it stood, I never got that bag of plasma replaced. It better not be on the bill! Should it be this difficult or am I just being a pain in the ass?

Friday – June 6

Early this morning I had an appointment to see Dr. Kim (Chemo) It was brief, my scans looked clear and my blood work was satisfactory. I'm still CANCER FREE after one year! Denise my dietitian stopped by to discuss changing my gruel formula. Apparently Pro Balance is being discontinued and we need to find a suitable replacement even if it will be short term. After this short day, I went back to my hotel room. Every muscle began to ache and I was thoroughly exhausted!

Saturday – June 7
I was able to sleep in late. I slept like a rock, over 10 hours! It’s so much easier not having that long feeding tube dangling around me all night, like a snake wiggling against my skin. After I awoke, I went down to check out and asked about hiring a cab. The desk clerk offered to call a limo service they use. The cost of a sedan was about the same as a taxi. OK sounds good.

Within the hour a very dapper gentleman arrived, a man of class and distinction. He was dressed to the nines in a perfectly tailored suit, and sporting a very handsome chapeaux. I was still exhausted, even after all that sleep. As we traveled to the airport, the driver was unusually quiet. Then all of the sudden as he began to converse, the class of this man went right out the window at 70 mph!

He began to talk, and talk, and talk, but not chit chat. He ranted about how alcohol once ruled his life. How he would circle the liquor store every morning waiting for it to open because he couldn’t wait for his next drink. He liked Wild Turkey to start. TO START?? The TRUE man began to emerge. His language transformed to that of a street urchin: Mother F’n this, Mother F’n that. After he got his alcohol fix he would seek out for stronger fixes. He eluded to it as, "The good shit!" I assumed he meant drugs.

If he had early calls to pick up clients, he would answer the phone, utter something nasty, and hang up on them. He told me he used to have a lot of high profile clients, but they were all gone now. I WONDER WHY? It was evident: Clothes DO NOT make the man! Nor do they give him class, willpower, or an education! He dropped me by the curb at the airport with, “Have a good one brotha!” and disappeared in his Caddy down the highway of obscurity.

By the time I made it to the plane, I was out like a light. For some reason I just can’t keep my eyes open very long. I feel like I have the onset of narcolepsy. When the plane touched down I grabbed my luggage and made my way to the taxi stand for a ride home.

A nice woman driver pulled up, New Yorker… maybe Jersey. She asked where I had come in from. I explained the whole cancer thing. My head began to ache. I guess from all the exhaustion. Maybe I was traveling too soon after surgery. I was light headed. At that point she became my doctor, mother, and spiritual leader. She dolled out advice like she was a pro. None of it making and sense of course. She was another nut!

“You’re here for a reason Dear. You must go out and heal the others. I’ll stop at the drug store and pick you up some Maalox. It’s located along the bottom shelf in a blue bottle. It’s good for a lot of aliments.” She began. Gee $250,000 in doctor and hospital bills and all I needed was a $6 bottle of Maalox and maybe a little Wild Turkey! What was I thinking?

By now it was obvious; my life is turning out to be one big lesson in understanding the nature of the human specious and my own fortitude. Maybe I should be less engaging, then half this crap wouldn’t clutter my world, but then life wouldn’t be so entertaining.

There’s no place like home!

Peace B

Wednesday, June 4, 2008

The Cancer Chronicles 31


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.


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!

My Mic-Key Makeover


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

Tuesday, June 3, 2008

The Cancer Chronicles 30

One Mo Time!!!
Saturday - May 31

A stroll down Memory Lane...

It's one day before my departure and I need to stop at the store to pick up some items. This is something I dread doing! I used to love to grocery shop, but now that I can't have all the wonder foods it contains, I hate it! Shopping is the caveman's equivalent to hunting and gathering. It's innate, something you must do. Once an alpha shopper, now reduced to a miserable man with a barren cart that only wants to turn left. Pit-e-full!

I remember those smells, oh they smell so good! I only go shopping monthly, mostly for toiletries and cleaning supplies. I begin walking slowly, savoring every moment. I spot fresh pineapple. I hover a moment and take a deep breath. As I travel along the consumption highway I see, shrimp, pasta, and a 22 ounce porterhouse steak, OMG STEAK!!! So thick, so red, so juicy! So NOT happening! I can't explain the feeling. I just want to clear off every shelf in a raging orgasmic frenzy, with the Mayflower Moving Company standing by to take it all home! Has anybody ever gone "postal" in a grocery store? I guess it would be called "grostal" ???

As I hit the check-out with my contemptible catch, the young man asks me about my neck (I've had the area bandaged since the bee sting.) He helps me out to the car and asks if I had an accident. I told him, "I have cancer." He says, "For reals?? Dude, wow! Like, how do you get that?" (Our tax dollars hard at work)

He's probably 18 and acting like this is the first time he's ever heard of cancer...well, it probably is. I explain the removal of my tongue, why they cut my neck open, and show him my forearm where they took the skin to rebuild my tongue. His eyes were wide with disbelief. Then I explained the answer to his quandary. When I got to the part, smoking may cause cancer, (I never have) including second hand smoke, (mom smoked like a chimney) he was in shock. "I'm not hangin around any smokers from now on!" he quipped.

Sunday - June 1
I'm tired today, not much sleep last night thinking about the arduous week ahead. Three doctors, a new feeding tube, blood work, CT scans, and surgery to adjust my tongue flap...big week!

My friends at ACS hooked me up with a great rate on a hotel room in the medical center. This is such a big help since the bills keep adding up and up and UP!

I'm driven to the airport with a little time to relax before the flight. This trip has only just begun and I'm already exhausted! I'm carting two suite cases, one for clothes and a very heavy one containing an two cases of Pro Balance (my gruel,) enough for the whole week.

The lady at the baggage check puts an unusually large tag with red and white stripes on my bag. The cans of nutrition clink and clank as the bag is thrown onto the conveyor belt. I'm sure she thinks there might be some kind of bomb in there. I'm waiting for a security guard to appear out of nowhere and whisk me off for interrogation. Nope, looks like I'm free to fly...so far anyway.

I couldn't get that tag out of my mind. None of the other bags being placed on the belt had that tag. It's a flag for something. As I went through security, I was waiting to be pulled aside. Nothing...humm...white, middle aged, 120 pound, frail male=no threat. Good call!!! Hell, the little 3 year old seated in 2A could take me at this point!

The plane ride was uneventful. I couldn't find Mr. Fu's business card, (do you remember Fu? I know I do!) So I had to take a cab. I asked FIVE cabbies if they would accept credit cards. All said no but one. Guess which one I took? Miss you too Fu!

My hotel room is very nice for the price. A newly renovated Holiday Inn. Even though everything is new the first thing I do is remove the bedspread and sanitize the TV remote! Have you seen those black light reports on TV showing all the germs in hotel rooms? It freaked me out.

My buddy Herb is constantly traveling. He stopped in for a short visit with one of those portable black lights. After looking over my own home with it, I was ready to break out the bleach and scrub brush. I maintain a very clean home and I was still freaked! Sometimes too much information is not always a good thing!

When I settled into my new hotel home for the week, I opened up the suitcase containing my food. Sure enough, security inspection tape was sealing the boxes. I'm just glad they didn't take it out on the tarmac and blow it up. It's easier to consume this way.

Monday - June 2
Up early at 5:30 AM to shower and catch the shuttle to the hospital. I am without energy. My back is killing me. Seems that I'm the first one to grace the head and neck center this morning. It's 7 AM!

At check-in I review my schedule for the week. I notice that Wednesday is going to be impossible! I have only one appointment today and tomorrow. They have me scheduled from 6:45 AM to 11:30 PM on Wednesday! A 17 hour day with surgery scheduled the following morning??? WTF?? Doesn't anybody have a clue? They've had 4 months to schedule me! The sweet girl at the desk TOTALLY understands and tells me she'll work on it while I'm seeing Dr. Clayman this morning.

I'm ushered into the office, vitals taken, and then placed into a room waiting for The Man! When Dr. Clayman arrives he's full of smiles. We have a quick chat about why I'm seeing him, since he didn't want to see me until August. I explain it was at the request of Dr. Hanasano as a precautionary measure before my surgery. As he looks into my mouth he tells his assistant to order a prescription of Diflucan.

He explains thrush is developing in my mouth. I ask if it's at all a serious problem. He said intelligently, "No not at all. It's your basic yeast infection...just like the vaginal type that women get." WHAT???? That's a graphic I didn't need at 8 AM in the morning, comparing my mouth to a woman's vagina. Maybe that's where the phase "sour puss" comes from?? And don't even ask what I've been eating lately, you all know the answer to that one!!!

I started to laugh out loud and ask, "Why would you put it that way?" He looked me square in the eye and said, as only a serious doctor would, "Well it is the same type of infection." After I pointed out my side of the "picture," he understood how what he said was perceived and we both burst out in laughter as I made my exit.

Back to the front desk to check my schedule. The scheduler has moved some appointments around. I can do my blood work and x-rays today. That will shave a few hours off Wednesday. As it stands, I still have a 12 hour day ahead of me. Nothing else could be changed. (INSERT YOUR FAVORITE CURSE WORD HERE)

I drop off my script for my vaginal infection at the pharmacy and head down for blood and x-rays. That's always fun. I have to admit it's one of the best production line systems I've ever witnessed ...on its good days.

From there I make my way to the business office to scrutinize and pay some of my bills. Always know what you're being charged for and ask questions before you pay. Remember my first feeding tube? Insurance wouldn't pay for it because the hospital coded it as a "supply" instead of a "prosthetic." It took several months to clear up that $300 mistake!

The hospital offers a hair salon free for cancer patients. My hair was cut in February on my last visit here. I figured I'd take advantage of it again. I'm now $700 lighter after visiting the business office. I've used the services before with fairly good results. With the chair faced away from the mirror I explain, "Don't touch the top, leave it long, but shorten and thin the sides and back. I assumed she was listening after she acknowledged what I said with, "Got it. No problem."

I should have known something was about to go wrong when she fired up her electric shaver instead of grabbing for the scissors. I watched four inch long strands of hair float like a feathers, ever so softly to the floor, in slow motion. C'est la vie!

Long story short..hair story short, oh hell...IT'S SHORT! I've seen more hair on Chemo patients! Do they take cancer patients in the military? She then asked if I wanted my eyebrows trimmed. TRIMMED??? Why?? Because there is now more hair on my brow than my on entire head???? HELL NO! I have a yeast infection not head lice!

CAVEAT EMPTOR BABY!!! Hey, it was free. Well...it should be grown out by Fall, if I'm lucky.

I'm outta here!!! More to come...stay tuned. I'm here all week!

Peace B

Words To Live By:

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