The Cancer Chronicles 24

Day 2

Another 6:30 AM awakening. Off to meet Dr. Hanasano. I haven't seen him since last August. His assistant arrives with a surprised look on her face. Once again I'm told how great I'm looking. This could go to a mans head, but I realize the truth and put it all into perspective. She looks at my arm (where the flap came from) and then checks the tongue.

All looks great to her, but she wonders why I'm not on solid foods yet. I explain my reluctance to bite down due to the pain that comes if I bite the flap. THERE IS TOO MUCH SKIN IN MY MOUTH!!! She tells me to address this when Dr. Hanasano arrives.

When the Doc comes in he seems very happy with my progress and how much better I appear. Another comment of how great I'm looking. Even with my slow recovery he is pleased. He FINALLY agrees that we should adjust the flap by taking a 1 inch X 1 centimeter of slice of skin out. HURRAY!!!!

This should allow me to chew more comfortably and perhaps even better my speech. Although there is a possibility of it making the speech worse. That's the risk I must face, but I think I would rather eat at this point than continue on a feeding tube the rest of my life!

The timing is up to me as long as it has a minimum of a 6 week lead time. His only concern is for my healing after this surgery due to the amount of radiation that was received on that side of the mouth.

It's also suggested that while I'm here I see a speech pathologist that specifically deals with edema related issues (abnormal fluid buildup in tissue cells.) I still have an enlarged lower lip and swollen cheek. It seems like a good idea, if it will help the healing process.

I'm not excited about the actual surgery, but the prospect of eating real food is my motivation.
Motivation makes the world go round. Now go out and find something that motivates you.

Peace B

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The Cancer Chronicles 23

And We're Off!!!

Up at 6:30 AM. Blood draw early this morning along with a chest x-ray. Fun Fun Fun! Then on to my speech therapist. Not much news there. She just wants to see me ween myself off the feeding tube and can understand why I'm having trouble with solid foods because of the size of the tongue flap. Then onto see the always grinning Dr. Morrison. He seems to be opening up more. Always a man of few words, but he was much more social on this visit. He seems pleased with my progress.

I often wonder if it's hard for many of the people that work with cancer patients to get too close. There's always that chance the patient might not survive. Not only dealing with the loss, but maybe even a feeling of failure. I'm not sure I could do what they do. The emotional impact must be great knowing the odds of death associated with this disease.

This was an easy day and I feel really good about what has transpired thus far, but tomorrow will be another day.

Peace
B

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The Cancer Chronicles 22

LIVE
From MD Anderson Cancer Center

Once again I find myself here at MD Anderson. This time for a check up to see if my cancer has returned. Charlotte Daigle from the American Cancer Society (ACS) in Houston has found me very affordable accommodations. We became friends over the phone last year when she told me of her husbands battle with oral cancer. He actually had the very same team of doctors I have. Unfortunately he lost his battle with cancer.

This is my first day back in three months. It appears different to me. So many of the same faces. Not just the nurses and doctors, but the greeters, volunteers, and even some patients. Many have stopped me to tell me how great I look. It makes me feel really good, but then I have to ask myself...How bad did I look before???

Dr. Clayman, my surgeon, is not seeing me this visit. He doesn't want to see me until August. I guess that's a good sign. Unless I've been such a pain in the ass he just wants a break! He's still my hero!

Blood draw at 7 AM on Tuesday starts the day, followed by a chest x-ray and an appointment with my speech therapist. Then finally a quick visit with Dr. Morrison, my microwave (Radiology) doctor.

Wednesday I will meet with Dr. Hanasono, my plastic surgeon, to address my tongue flap. I still have a constant dull pain and I have said from day 1...THERE IS TOO MUCH SKIN IN MY MOUTH!!!

When I attempt to chew, I have a tendency to bite the flap which causes great pain and then I'm back on my pain meds again. Which is not necessarily a bad thing since many of my friends think I'm more agreeable while on drugs...go figure!

We will need to address when to remove the feeding tube. If there is an adjustment to be made to the tongue flap, I assume the tube will remain until after I heal from that surgery.

Thursday is the most important day, I have my CAT scan. This will show if the cancer has returned or if I'm still cancer free. This is the day I'm most nervous about. It's like reliving being diagnosed all over again. I'm feeling very confident there is nothing to worry about. This cancer messed with the wrong dude!!! I'm like a cockroach...look for me after the Holocaust!

Friday will end this trip with a visit to see Dr. Edward Kim, my Chemo therapist. Then I will head back home ready to enjoy another 3 months of peace.

Wish Me Luck!
B

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The Cancer Chronicles 21

THE GREAT DEPRESSION

Well it sure has been awhile since you last heard from me. I just haven't felt up to writing. Actually I haven't felt like doing much of anything. December was a very hard month for me. I have to say I went into a deep depression. Not the crying, feeling sorry for myself depression, the I don't care, go away and leave me alone kind.

I stayed in bed most of the month, honestly not giving a shit. I guess it was just everything washing over me at once. I was still fighting with the hospital over bills. The debt has mounted. Even with a 30% co-pay, my share of the over $200,000 bill so far, is hard to fathom. The anniversary of my father's death is in December. My step father also died in December. My birthday is in December making me another year older and my mother was once again in the hospital in December. I had plenty of things to think about and reflect upon. Hummm December sucks!

One year ago mom and I were having the time of our lives on a cruise ship with Rosie O'Donnell. (check the archives for that story) I wasn't 100% sure I had cancer at that time. Then January 2007 was my turning point. Nothing would ever be the same again. Cancer, drugs, surgery, radiation, chemotherapy, more drugs, yea drugs... and having to make the decision that I was no longer able to take care of my failing mother. In 2007 mom would grace the hospital 4 times with 2 long term rehab stays. All while I tried to cope with my own health issues.

So, December was not at all a good month. By mid January 2008 the Christmas cards lay on the kitchen table unopened. Mom was once again in rehab. Loving Christmas and birthday greetings overflowed on my answering machine. My email box stopped annoying me with, "You've got mail!" and started demanding "Get off your ass and answer this shit!" Hundreds of unanswered emails from all over the world. Many of whom have kept up with this blog...and Maureen, my girl who's always there. Thank you!!!

I can't account for the 6 weeks they just seem not to exist. So I guess it's time to get back into the game again. I just gotta breath and move.

So, I humbly say to those of you, Thank You for your kind and loving thoughts. I will be headed back to MD Anderson once more for another series of check ups. Wish me luck!!!

Peace B

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Ha Ha Ha! Ho Ho Ho!

The Cancer Chronicles 20

Cancer Free and Now I Can SEE!!

Well I've finished my two weeks in Houston for my base line study and cataract surgery. All my scans show no sign of cancer! It appears I’m no longer dying …well not of cancer anyway!

The eye surgery went well and I can’t believe how well I can see! I can see the hair on an ant’s ass a mile away! Or is that the hair on an aunt’s ass a mile wide??? Anyway…I can see things I must have been missing for years. I’m like a child with a new toy. Only this one is hard to break and even harder to misplace!

When I went in for my barium swallow test with my speech therapist, Deince Perez, (I just love her and yes that's how she spells her name) I had to change into a gown in the bathroom. I have been in this bathroom many times and never really paid attention to my surroundings. On the wall I spot a coin operated machine made of stainless steal that accepted quarters. I’ve seen it before, but this time I noticed two symbols on the machine and slot for coins next to each symbol. One appeared to be for a tampon, but the other I was unfamiliar with. Not to say that I am very familiar with tampons mind you!

I was thinking it might be condoms, but that would be silly to have a condom machine in the hospital, right? Well, I had to ask Denice what it was. This new eyesight has me looking at the world through a child’s eyes. I called Denice to the door and pointed at the box on the wall. “What’s that for?” Poor girl turned 6 shades of red, maybe even a little purple. She said, “Nobody’s ever asked me a question like that before! It’s for tampons.”

I had to laugh at her embarrassment, “I got the tampon one, what about the other one?” As her red turned neon she replies, “I’m going to say… maxi pads.” OK, so as a guy I have no idea, but now that I can see clearly again, I just had to ask!

The barium swallow test was set up because every morning I wake up I’m unable to swallow properly. The liquid does not want to go down, instead I become a sprinkler as it proceeds to squirt out my nose! After some use by midday I can swallow with some normality again. Dr. Clayman recommended for me to stick my fingers down my throat and stretch it out. Well I will say it helps but it sure ain’t pleasant!

The swallow test showed something a bit odd. Par for the course…when have I EVER been normal? I’m only swallowing down the left side of my throat. The odd thing about this is…it’s where they sutured the tongue flap and that side is the side that has more of a tendency to atrophy. My good side, the side untouched by surgery, was not allowing the liquid to go down. No explanation was given.

Denice wants to try to wean me off the feeding tube by beginning a diet that will be processed in a blender. So I’ve been given a cook book on how to make my meals. No fuckin way am I making pizza in a blender…and yes there is a recipe for that! I have been making shakes for some time and adding protein powder to aid in the healing process, but something about Lasagna from a blender just isn’t normal! As everything else with this experience, I’ll take it one day at a time!

I’m never really hungry. I have some taste, but since I can’t chew there’s not much enjoyment. When I do attempt to chew, a small portion of the tongue flap pops it’s way between my molars. Think of a balloon half full of air and when you apply pressure to the middle, it bulges on the side. This bulge then gets caught between my teeth and causes great pain.

Pain?? Yes…during the operation the plastic surgeon attached a rogue nerve to the flap. I can’t seem to feel hot or cold, but I sure as hell know I’ve bitten it! I might need to have a second operation to make “adjustments” to the flap. It was explained that this could interfere with my speech, but if it allows me to eat regularly I’m all for it.

While I was in Houston, a life long friend, Pom (Pomeroy) made a quick visit to see me… and I do mean quick. He traveled from Dallas to Houston in 17 minutes. Yes that’s right 17 minutes! How you ask? A US Air Force F-18 Fighter Jet. Yes, he is my very own Pom Pilot. He arrived in his flight suit, we drove over to Starbucks for some coffee then back to Dallas he flew. He is always there when I need him, one of my true friends.

I seem to run into so many people who have been touched by cancer. On my way home I sat next to a young man. We began to converse. Then the question he asks, “What brought you to Houston?” I explain, “Cancer.”

He tells me his story. He is a cancer survivor. His cancer was of the stomach. Our war stories are similar. He shares with me that both his parents died of cancer and he wasn’t suppose to survive. He’s been cancer free for 10 years. A happy ending!

I hail a cab to take me home from the airport, a 30 minute ride. During the ride I make small talk with the cabbie. As we pull into the driveway he asks, where I had gone. I tell him I was in Houston being treated for cancer. Forty Five minutes pass as we sit in the drive discussing cancer. He is a cancer survivor. He had cancer of the esophagus and went through similar head and neck therapy as I had. He has been cancer free for over 15 years. A happy ending!

I hope it's time for my happy ending...until next time!

PEACE

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HAPPY THANKSGIVING!

This is truly a day for me to give thanks. May you all have a wonderful holiday....Peace B

The Cancer Chronicles 19

LIVE From MD Anderson Cancer Center

WE SHALL SEE... IN THREE D

Yes folks I'm back in the saddle again!

I've arrived for a weeks worth of tests and a surgery. I can't explain how tired I still am. So exhausted!

Over the last month I have had some very strange things happen. The likes of which the doctors can't explain. They say bad news comes in threes. What about triplets, 3-3-3?

For three days I've experienced pain in my arm pits! When my biceps rubbed against my chest I was in a lot of pain, causing me to walk around with my arms up like Popeye. Then I had a stabbing pain in the back of my neck for three days, as if someone were driving in a nail, but only in a very small spot, not at all like a headache. Then I experienced what I can only liken to arthritis in EVERY bone in my body for three days. You name a bone...it was stiff and hurt so badly when moved I stayed in bed the whole three days! After all that I was normal...oh wait normal by my standards!

So here I am back at MD Anderson Cancer Center. On Monday, I had a CT Scan and chest x-rays as a baseline study to use as a comparison for future evaluations. After which, I saw Dr. Clayman. He was extremely happy with the scans. So happy in fact, that he doesn't want to see me until next August, which is a bit rare. They usually want to see a patient every two months for the first year to see if the cancer returns. So, I either kicked cancer's ass or I'm so much of a pain in the ass that they don't want me back! Stop laughing. I hear you!!!

While I was in Dr. Clayman's office I mentioned that I still didn't have a resolve on my fluoride dental trays and with one wave of his famous magic scalpel he summoned the head manager of all the nurses and we talked about some problems for almost 40 minutes. She actually listened, interpreted, gave her own views, and took action. WOW!

When we finished she took me directly to the dentist office, no appointment, no waiting, no problem, and no excuses! The dentist was waiting, apologized for the inconvenience and presented me my fluoride trays explaining the charge would be removed from my bill. We talked, he listened and explained his side. FINALLY a two way conversation, with two people in one day! Too many times I have felt I have not been heard. Can you believe that??? Me not being heard???? Now I'm laughing!

The hospital appears more organized to me this trip. More staff, many in training and it seemed there are a lot less patients here than before.

As I write this I am in the hospital again for an overnight observation due to eye surgery. Remember today I had my cataract removed. I LOVE MY EYE SURGEON!!! What a doll! Dr. Stella Kim. A small woman with delicate features and delicate hands.

I arrived at 9 AM for a 9:30 appointment. I was checked in, vitals were taken and I was told to wait in the lobby. About 9:20 I was reading on my laptop in the lobby when I felt a quick tap on my shoulder as a breeze blew past me. It reminded me of playing tag as a child. As I looked up, walking with a quick pace, never stopping, I spot Dr. Kim's sweet smiling face. She beamed ear to ear and said, "See you soon." Then she disappeared down the hall.

At 10:40 AM, my nose still buried in my laptop I hear a stern women say, "What are you still doing here?" As I look up I see sweet Dr. Kim, only this time her face is a bit stern. I explain I was told to wait. She went back into the office and the whole staff stood to attention. This little Asian doll has balls! "Someones going to hear about this," she let's them know she is not happy about the error.

Well you guessed it. I was ushered in immediately. Cap, gown, compression socks, booties, handed to me with speed. The process begins. Anesthesia, drip,drip,drip, I get comfortable as if having a few drinks, but not totally out. Does that come in Jack Daniels? Drops to the eye for numbing and to prevent infection, then I'm almost ready.

Into the O.R. we go. There's that smiling face again, so kind, loving, and honest. Dr. Kim holds my hand and says, "I'll take good care of you." Of that I have no doubt. I trust her wholeheartedly.

They numb the eye with more drops, place an oxygen tube in my mouth, then place a device to keep my eye open as she works.

The procedure is called Phacoemulsification (fak-o-e-mul-sih-fih-KA-shun). During this procedure, the surgeon removes the cataract but leaves most of the outer layer (lens capsule) in place. During phacoemulsification, the surgeon makes a small incision — about 1/8 inch or 3 millimeters (mm) long — where the cornea meets the conjunctiva and inserts a needle-thin probe. The surgeon then uses the probe, which transmits ultrasound waves, to break up (emulsify) the cataract and suction out the fragments. The lens capsule remains in place to provide support for the lens implant.

Once the cataract has been removed, a clear artificial lens is implanted into the empty lens capsule. This implant, known as an intraocular lens (IOL), is made of plastic, acrylic or silicone. It requires no care and becomes a permanent part of your eye. You'll likely need reading glasses after cataract surgery.

Some IOLs are rigid plastic and implanted through an incision that requires several stitches (sutures) to close. However, many IOLs are flexible, allowing a smaller incision that requires no stitches. The surgeon can fold this type of lens and insert it into the empty capsule where the natural lens used to be. Once in place the lens unfolds to about 1/4 inch (6 mm) in diameter.

Recent advances in IOLs include lenses that filter out ultraviolet light — also known as blue-blocking lenses. This was the type I was fitted with. Other types of IOLs provide multifocal vision — being able to see things both near and at a distance. Multifocal lenses offer reasonably good near and distance vision. However, vision at the intermediate range is sometimes less than satisfactory. Glare is reportedly a problem with multifocal lenses, but design improvements are ongoing.

My new lens now in place, I find myself in a familiar hospital room arguing with room service about getting something to eat. I am still on my feeding tube. I can eat things like yogurt, ice cream, and puddings, but my chart says "CLEAR liquid diet." They won't let me order. I have to bargain with my nurse to get it changed to "soft food."

I feel like an attorney presenting a case. Eye surgery...HELLO!!!??? How does that affect diet? Does everybody that has eye surgery get water or juice for dinner? I know I have a feeding tube, but I want a banana smoothie, chicken soup, and pudding. Why is this a problem? Is it hazardous to look at food with a new implant? Are you afraid the eyeball will fall out during dinner, making more difficult to retrieve from chocolate pudding than say, Ice Tea?

For the third time in three days..humm again with the threes, a conversation takes place were someone listens, interprets, gives their view, and takes action. My nurse grants permission to change my chart to "soft food." She was outwitted. I've had plenty of rest!

To add to today's excitement, I checked my phone messages: My mom is back in the hospital, in Michigan, with severe breathing problems again, her second time in less than a week. Big surprise...SHE'S SMOKING AGAIN! I received a call from a neighbor asking if I was alright due to the fact that a fire truck and EMS squad were in front of my home. WHAT????

Yupper, apparently the house medic alert button went off and the alarm company dispatched even though my cousin, who is on their call list, told them it had to be a false alarm. I find it odd that on the same day and approximately the same time both mom and I are admitted to hospitals in different states, the medic alarm goes off at the house, in yet a another state. How odd, three states, another THREE occurrences.

I'm now fed, well...felt like I was anyway. I know I still need the feeding tube gruel for my health and nutrition. I long for the day to chew real food again! Now one of the youngest members of the ocular implant club, I can rest from another long day. With all this experience I'll be a doctor in no time. There's more than one way to get a degree. Would you consider this "street smarts" or "book learning?"

Now I lay me down to sleep.
I pray the Lord my soul to keep.
God bless everyone!

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