Chapter 2

Chapter 2

04/2008 Tuesday

As you know from reading my last blog I know that I have what is known as Nasopharyngeal Carcinoma, (I'll call it NC from now on) a cancer that grows above the throat in the sinus cavities.

Dr. Highfield called me today at 1400 as I was driving on the PA Turn Pike heading west coming back home. He sounded a "little" guarded" as he spoke with me and what he told me was a little on the scary side.

He confirmed that I DO have NC and it's more advanced that he previously thought after viewing the CT Scan and from the results from the biopsy he took last Friday. It is about the size of a golf ball and has spread into the area above the throat and into my lymph system and top of the right lung. His recommendation is that surgery is out of the question as it could be to "damaging" to me so he says that chemotherapy and radiation treatments are how we will treat this invader. He has set me up for a PET scan this Friday and an appointment with another Doctor, and is still working on an appointment with an oncologist.

Dr. Highfield told me that the treatments will start with chemo and radiation to jump start the treatment and then I would be doing both over the course of 6 weeks. The radiation treatments will be 5 times a week and he was uncertain about how many more chemo's I would do.

I'm telling you, this is how I've always wanted to start a summer off, by being completely hairless and throwing up like I'm pregnant or out on a night on the town! I just hope the stupid hair that God strikes all men with in their later years falls out also but doesn't come back! And maybe my hair will come back like Tom Cruz's! Keep dreaming dude!

After talking to the Doctor, I called home to Barbara. We discussed those things we knew were about to happen. Mainly, me not being able to work, how we would pay bills, put food on the table for the boys, buy clothing for a rapidly growing son Jerry, who at 14 is now 5'8" and 150 pounds and not slowing at all! Buy meds for her and the meds we know I am about to start on!

After 15 minutes or so, Barb got to the point where it was to hard to talk about and started to get upset and cry. We said our good-byes then and I sat there and looked out the windshield for a few minutes in a kind of unbelieving trance of the immense burden I was about to put on my family.

15 years Barb and I have been married, never a single bounced check, never really wanting for anything as I did make a good living as a truck driver even though it does suck only seeing my family on weekends or MY weekend which is normally a Thursday and a Friday. Yes things had gotten a little tight the past year as it was with just about everyone else in America but this was going to be the death of a happy family!

I sat there thinking about the speal I would tell the bill collectors when they called, how I would be "Pissed off" at them and how I would have to deliver it to them!

Now it was time to call my sister Carol who lives north of Atlanta. She gave me a few tips I need to bring up with my insurance company and we talked for a few minutes until it was MY turn to let the tears flow. She and I both started and we had to hang up. It's hard to talk and cry on a cell phone.
The trees blooming, beautiful mountain views, I never saw them as my mind wasn't in the truck as I kept heading home.

I'm home now on a Wednesday night. I have a lot to do tomorrow, calling the insurance company, motorcycle title screw up and a few other loose ends and things to tie up and then see about Friday. Barbara and I have already started the arguing that goes with a high stress situation. I need to chill! The carpet can get stretched later if we can manage to keep the freakin house! Paint? Not in THIS lifetime that is turning out to be a 2 month year! Is THIS what makes normal humans go crazy? I better go back and read the ACS page about support groups!


05/01/2008 Thursday

I had a great day today just riding around on the bike. We went to Mitsubishi and traded the lease in on another as the new Lancer is cheaper than the Gallant, is brand new AND costs less on insurance than the Gallant! It also gets about 5 miles more on gas mileage than the Gallant also! Saved about $200.00 there so that helps out in the next 2 upcoming months where there won't be any pay coming in!
I also went to the bank that Pro Cycle had used MY paid off motorcycle in some kind of money laundering scheme and started the process of getting that stupid lien taken off! Can you believe that I've been riding my bike with the wrong VIN numbers on the pink slip for over 2 years! But it was better than sitting around worrying about what’s about to happen tomorrow! I hate a thief!

05/02/2008 Friday

I went to the hospital today for a PET scan. That was so freaking BORING! After they inject you with the radioactive isotope they have you lay there in a barely lighted room where you can't listen to music, read or knit a sweater! For some reason the cancer cells attract the molecules in the stuff like sugar and if you have a "stimulated" brain then it gives a false reading. So anyway, I lay there and even dozed off till the nurse came in and took me back to the PET/CT machine where she strapped me down, made sure my head wouldn't move and asked me what kind of music I liked! HUH? Oh, 80's rock will do, and she left, turned on the thing and away I go. But of course no music until the head and brain were done! Let us not stimulate that brain! As if it's NOT being stimulated! All of the questions and need to do's running around in between the ears should make it look like my brain is completely saturated with the little demon cancer cells!

The PET scan done I go home to try once again to get the title fixed on my bike, but that’s a goner because the bank didn't get it right on the lien release! I also have to go see my new bestest friend in the world, Dr. Kim. He'll be my radiologist for the rest of my life!

The first visit to St Johns Cancer Center here in Springfield, Mo. Is a little daunting, it’s a nice place to visit, but, I wouldn't want to live there as if I now have a choice!
Met a couple of nurses who will be on my "team" but ask me their names and I'll have to lie to you because I was to over whelmed by what was taking place.

Dr. Kim comes in asks a few questions and starts HIS exam. He starts with the usual feeling of the neck pokes around in the mouth a little then the fun part of squirting linolcane (?) (it’s just like the dentists uses when he pulls a tooth) in the nose and goes on safari with a nose probe! OMG! DOC! HEY! DUUUUDE! He's all the way past the tonsils and into the lung!
Ok Mr. Purdy say "E"
.... yer chitting me, right Doc?
EEEEEEEEEEEEEEEEEEEEEEEEEEEE
ok Mr. Purdy Puff your cheeks out
??????
OK, Now, just breathe naturally through your nose!
%$(()%@&@*@%*( KIDDIN!. I know he can tell what color underwear I’m wearing he’s got that scope so far down my throat!

That done we have "THE TALK"

Condensed, it's something like this. This is advanced Nasopharyngeal Carcinoma. Only about 2000 people in America get this cancer. I screwed up as I said before and didn't listen to my body! It's into the top of my throat. There is no surgery for this and the radiation and chemo therapy will be at least 6 weeks long. Because the radiation is being applied to my head I'll have to have a feeding tube and a CT port for the chemo inserted into my body. The first 2 or 3 weeks won't be to bad with the radiation as it is a cumulative thing and actually won't show any "bad" effects until that time when my body has adsorbed more of it.

I'll get to ride my bike, drink GALLONS of fluids, eat as much food as I can because, the feeding tube is because the radiation will be "destroying" my throat and swallowing will become difficult! It will start with food being creamed and blended; drinking it until I can't swallow anymore then it'll be syringe time! Right into the stomach!

When Dr. Kim told me I wouldn't be drinking any more coffee I was almost speechless! NO COFFEE? Hell Doc, just shoot me now! I don't know what will be worse, the effects of radiation poisoning or the headaches from caffeine withdrawal! But another reason for no caffeine products is that the caffeine keeps your bodies cells from retaining the moisture which I will need when I start my treatments.
I'll figure that out when the time comes! Now what was the name of that guy testing radio waves to kill tumors? (REALLY, let me know!)

Then the chemo is started! Apparently, I'm lucky here. It'll (as it stands right now) only be applied every 21 days. But I'll have lost all of my hair by then and be applying eye brow liner so it LOOKS like I have some left! He jokingly said I pretty much won't have to worry about ever having to shave around the neck (look at my pictures and tell me I'm a happy camper!)

Another bad thing with having radiation applied to the head and neck area is I will get to loose the REST of my teeth! I can expect my saliva glands to dry up and pretty much stop working for the rest of my life giving me "dry mouth" (yep, the same as a pot smoker gets, but without the munchies!) The only GOOD thing about that is COFFEE! (after treatments!) The bad thing about no saliva is it has something to do with keeping your teeth and gums moist and with out a certain amount, your teeth will decide to go bad along with the added effects of the radiation treatments doing wonderful things to the jawbone and it's almost best to have them removed before this happens as pulling teeth from "brittle" bones is NOT a good thing! Awww, whats a broken jawbone to not enjoying a good steak?
So that is my day for today. The GREAT thing is, I will be leaving tomorrow for another run to NYC and when I get back I go in for an MRI, an appointment with a dental hygienist and what ever else the doctors can come up with! I do know I'll wake up to another dawn in the morning.

I'll have time to myself to do a little crying (really needed now) figure out how to raise a 14 year old with no income, support a wife who's health is deteriorating, with no income, and help a 23 year old mentally handicapped step son get on with his life, again with no income.

Late night in bed

Barbara and I cry ourselves to sleep tonight, It's the first time we have gone to bed together in years and the first time in years that we actually held each other as we fell asleep. I'm sorry sweetheart that I'm letting both of us down and I pray that I'll be here in five years to keep holding you.




05/03/2008 Saturday

It's kind of like a reprieve. I get maybe 2 more weeks of work in before this dance starts! I really hate it that I did buy tickets for it. Hate the fact that the music sucks big time and REALLY hate the fact that someone went and locked the freaking doors to the dance hall so I'm stuck dancing with the ugly lady and I have to keep dancing until the music stops!

I'm making another run to NYC, and I'll be stopping in Williamsburg Monday evening for another night at my "home away from home" for another good dinner at a restaurant that I haven't decided on yet! I'm thinking Sea off of Bedford Avenue on I think N7 or N6. Maybe I can talk someone in joining me! I really hate to eat alone these days and to tell the truth I hate being alone even in the truck! I never got along being stuck in a closet with anyone except for Jerry my son when he was younger, and today I actually had to put the cell on charge as I had a lot of incoming calls and I think I went about 45 minutes before I would call someone else! Not to mention all of the text messages! You know texting really drains a battery! I don't know how this will work on weekdays when minutes aren't free! Maybe all of my friends and family will get on Sprint. Or maybe they'll all chip in and get me a free cell! LOL. Oh that’s right, I have the CB! Oh well drivers, the ratchet jaw rides again! LOL!

Well it's late and I've made the bunk in the truck one more time. Let’s see if I can go to sleep without having weird dreams, crying, or having more of those night sweats that have been plaguing me lately! At least I KNOW I'll wake up!

On a different note before drifting off, I'm wondering if any of you might know a tattoo artist that can come up with a tat of me about 6-8" high, standing in front of my bike, The grim Reaper in a pile at my feet (like Beetle Bailey after the Sarge has stomped all over him) with me breaking Reapers Scythe over my knee and the caption going 3/4 circle around the picture saying "What part of "NO!" did you NOT understand?" I have 2 more I want for when I have beaten this crap and I'll put them in later!

See ya'll tomorrow!

05/06/2008 Tuesday
I had a really nice day yesterday, I got my deliveries off drove over to where I like to park on Meeker Ave between N6 and N7, went on a “walk about” trying to decide on where I wanted to eat. After hitting Bedford Ave I finally decided on S&B a Polish place with good cooking and veggies! I was thinking about Sea but I guess I just wanted to watch everyone walking and so I sat in the front, looking out the windows people watching as I ate my beef stroganoff, spinach, and green beans, with of course, COFFEE! It's a different world now that you know you're not the indestructible person you thought you were!

It's funny when you watch a movie and one of the characters is dying and they talk about the colors being so much better or the look of a leaf, and it's true! You DO look at everything in a different light. Colors, shapes, textures and even people! The feelings that pass through you as you try to take it all in and the smiles that come to your lips as you remember things in your past. The thought that your life passes in front of you before you die is so much different when you've been given 5 years and then "we'll see" because you now get the chance to actually look at EVERYTHING you've done back through the years and analyzed every freaking detail! Why, why, why did you do some of the things you've done, and why, why, why, didn't you do this differently and that differently or why didn't you say this then instead of that? I guess the old phrase about horses and barn doors, huh. That’s life as the song goes.

There are so many things going thru my mind now, sitting here in Wheeling, West by God Virginia that I can't find words for or where to start to put them to words.

I'm heading home and I know this is my last run for a while. Thursday I have an MRI. Friday, the Dietitian and Dental Hygienist. Monday I get a CT port put in to a vein, fitted for a mask, I think on Tuesday, Wednesday I go in for surgery for a feeding tube and might get to stay the night there, OH Whoppie do da day! I hope I get to ride my bike after the tube is in as I know that the hard stuff is about to start. I KNOW I want a little alone time Sunday, and I pray for a beautiful sunny, warm day!

And to the idiot trucker who came on the CB while I was talking to another driver who had gone thru chemo asking why I didn't save HIM and the rest of the healthy the expense of running up HIS insurance and commit suicide. I told you on the CB and now. Kiss my royal red ass! I've got way to many people in the world I haven't pissed off yet with you being just one of them so I won't get off the merry go round just to make your silly ass happy! I'm keeping all of my toys in this playground just to make you miserable! I'll take them home when I'm ready, AND to piss you off! You and those who think like you can all take a dive off the high dive into the shallow end of life! As I've said and will keep on saying "The dance has started and they locked me in the dance hall!" This has become an exercise of mind over matter. I don't mind because you don't really don’t matter! To bad you weren't man enough to come up and introduce yourself as I really wanted to see what a moron really looked like! Coward behind the microphone of the CB! Thank you for giving me another in a long list of reasons to fight this thing that has turned mine and so many others lives upside down!

I'm hungry and the truck stop has, well, passably decent food, a shower and bed. G’Night all. :)