30 January 2000 :x
Woke up feeling better, but today was a chore. Between all the nausea.... and the prune juice..... ‘Superbowl Sunday’ took on new meaning. These are going to be the ‘dog’ days I’m told and so far so true.... but guess what ... I’m getting closer to home each time I feel ill too - so I don’t even care........ ‘cause it means that time is passing..... yeah!
I got a call from Marv, but I was on one of the only two walks that I took today..... (swerving maybe - and I was hugging the curb)... and my Mom took the message... would you believe it - he faxed me a letter to let me know I was in his thoughts! What a sweet hearted man he is. I know I’ve mentioned it before, but please as you are reading this... please just stop for a moment and say a prayer to God that Marv gets all better too...... Prayers are the best medicine in the world and since we’re both fighting cancer, he and I can use all prayers you can spare!.... Thank you.. really.
Ya gotta hear this.... I was chatting with my good friend Scrumb, and I had mentioned that Ian and I were going to go out later and look for alligators.. (saw ‘Lake Placid’).. a local kid who was fly fishing near the water told us that they are not really thirty feet long, “..only seven or eight feet long... you’re not from ‘round here are ya?” Well anyway we were talking about how folks are so casual about them here in Florida and Scrumb suggested that Ian and I print up some mock ads and cap them ‘round that say, “LOST .. Our eight foot pet Alligator..... answers to the name of ‘Fluffy’”... is that GREAT... or what? :)
29 January 2000 :/
wOooOOoZzy..... almost all day, the Platinum is really strong stuff and I was nauseous most of the morning. Tried to eat more of the fruit and stuff, but so far the chemo's holding things up.... so to speak. Walked two miles..... really tired though. Slept most of today away. Thank God for drugs!
People do come into our lives for lots of reasons, sometimes we know why right away and sometimes it’s not so clear. Some make a world of difference, touching more lives than they can even guess and ask for nothing in return but the purity of friendship. That is who Bernadette is. :)
Felt better later and I went out with Ian to a nearby mall...... got Mom a tee shirt that say’s , “I got bald in Florida” ..... hehe
28 January 2000 :p
Whewww... it’s been a long five days, boy and girls. The effects of the chemo are accumulative and brother... right now I am knuckles to the ground... if-ya-know-what-I -mean. Funny thing is they determined that the gravity fed pump, (the baby bottle one) is not the best for me.... seems that it has not been dispensing the full amount.... said the ‘Porte’ was ‘positional sensitive’ and is messing it up. So starting Monday they are putting me on the battery operated one. The Doctor said that I have to get more fiber into my diet, so I bought the fruit.... mixed, and the Metamucil and the prune juice like he suggested.
In Radiation I got my tattoos... that’s right - permanent tattoos, (weenie dots really) that they use to line me up for the *phzzzzzzzittttttt* part of the treatment. Still think it makes me smell funny... sorta burned smelling..... *cough*
Ian is still unsure about what’s up with taking off for Spokane, I can see the wheels moving and his worries, I ‘m a little lost as to how to help him.... but I’m trying.
Are you ready for this? While we were away at the hospital (for six hours) Mom and Aunt Toni-Ann had a spa day.... and now the family resemblance is even more pronounced. After Mom read about the rest of the site... from “The Nancy Show”... all about Bret .... she did it.... she had Aunt Toni-Ann buzz all her hair off. As we all were sitting around the table, she took off her hat to show me and said that she was so sorry for that day and the sadness it caused. I told her how touched I was and how much it meant to me that she did such a thing... she smiled warmly, lovingly .... then I added sorta casually... “but I’m not gonna write about it“...... we all glanced at her face which had instantly changed and we all had to laugh.
27 January 2000 :/
In the middle of the night I started to get really queasy. My Dad came and sat with me, he held me and we talked for a little while and I told him that I had taken the nausea medicine already and could not take more for a while. He said that I could sleep without worry and that he would wake me when I could take the medicine. I fell asleep and - sure enough - woke at 5:20am and took the medicine...... and I didn’t get sick. Dad is a real Angel, he died in 1984, just before two of his three grandsons came. Today while I was at the hospital, I called the house and my Mom asked if I knew that Dad was with me? I sure did.
A best friend told me a happy secret that kept me happy all day long.
My precious Ian, my heart broke for him today... his Aunt Madge who lived in Spokane, Washington passed away today. His Mother is just beside herself and here we are so damn far from home..... He want’s to be there for his Mom..... I want him to follow his heart and we both know that it’s important for him to go..... *sigh* ..... I’ll just have to be extra Ok so that my Best Buddy doesn’t have to worry about me.
Earlier when I was getting the three hour Chemo today, Ian and I were playing a card game. I was just looking at him fumbling with the cards in his hand. When suddenly I was so touched that ..... of all the people in the world who can say they know this great man...... I can. Or how amazing it is to be able to call him a buddy...... and I can. Then I thought how lucky I was to love him so deeply...... and I do. But when I realized how blessed I am to be loved BY him..... which I really am.... tears started to roll down my cheeks. Before I could wipe them away he looked up and his face was full of concern and he asked me what was wrong? I told him to "lay down a card already..... I have cancer.... I hav'ta plan!"
He recognized the quote from “Golden Girl’s“... and we laughed..... like we always do... and I told him what I‘ve just shared with you.... he was touched and then he won the game... *dabastard* :)
26 January 2000 :(
Wowzer.. last night was a rough one. Didn’t get much sleep.... seems the radiation and Platinum chemo are building up and my esophagus is getting ‘microwaved’ or whatever it is. But it’s working - I can swallow food and all. Hey, come on... cancer can’t all be fun and games otherwise everybody would be doing it!
I told Andy, the radiation Doctor, (a.k.a. The Zapper) and he gave me some special stuff to take the pain away... said next week may be harder ‘cause the effects tend to build up...... yea!
Gets better...... I gained five more pounds - I weigh 223 pounds..... at the hospital they are all really happy..... meanwhile all I think about is that scene from ‘Willie Wonka And The Chocolate Factory’ when that girl eats a blueberry..... *POP*
On a great note - I am getting some dried sweet Italian sausage shipped from my favorite deli (Dallieo’s) in Poughkeepsie, New York - my man Vinnie said I should have them by tomorrow..... yeah! I realize this means nothing to most of you.... I’m the one whose been combing the Florida country side looking - with no luck.
25 January 2000 :p
I gotta warn ya that a funny thing happens to some folks when they know that you're really ill. Sometimes they can’t handle it in the way that you might want them too. That happens. Some just can’t deal with it as well and they may not call or try to stop over, but you can’t take it to heart. This kind of disease effects everybody around you.... everybody... and some just find it too hard... that's all.
Chemo is going great, and I have been tape training and visualizing using the Zig Zigler tapes everyday - and meditating every night... it’s a must!
I just got off the phone with Kristopher, my eldest son. He told me that they are getting even more snow up there, “big flakes”. It must look like magic, I really miss the snow back home, but they aren’t the only ones that have ‘big flakes’ - check this out, (wish I had my camera at the time... damn-it). A couple of days ago Ian and I were coming back from the hospital.... and there on the side of the road, walking against the traffic, was no one other than Jesus Christ. Don’t ask me. He had on a white robe, and a rope belt, sandals and longhair with a crown of thorns. If that didn’t tell you who he was, then the huge twelve foot crucifix he was schlepping over his right shoulder was a dead give away. The only modest innovation was a five inch wheel he had affixed too the part that was originally dragging on the ground. With his free hand.... no joke... he was waving to the traffic, as if he was Barney or somethin’. I just thought it was kind cool to meet my maker and keep on truckin’. And yeah..... I waved back..... gotta cover ALL the bases.... ya-know-what-I-mean?
24 January 2000 :)
What a beautiful day, no kiddin'.
I had my very first Platinum treatment today... so far it's great. Every day, (Monday through Friday I get Chemo (5FU) - 24 hours a day via a pump and Radiation.... now that's every day.... but in addition to that I get this other chemo (Platinum a.k.a. 'Kick Ass Stuff') for three hours on Monday through Friday once every three weeks. This is the stuff that ends up saving you all that time you used to spend with a hair brush and I am told that it tries to get you to part with anything you've eaten.... since birth..... *blech*. (It’s 11:00pm and I still have not gotten queasy once.... yeah!)
Three hours later when that was all done, (Ian and I were playing cards and cracken up the whole time) I went and got my radiation.
My Aunt Rusty flew down and came to see me on her way to Key West. That was really nice ‘cause she loves me too and was so worried. She told me that she was trying to gain weight too so I turned her onto Ensure Plus - I gained 21 pounds in less than five weeks... I’m 218 pounds. Funny thing... always fantasized about being told to “you have to gain weight - eat anything you want” .... and now that it’s here...... heh.
Sourabh called from my Manhattan office to bring me up to speed, gosh did he have me laughing. He is a fantastic friend and it was wild to hear him go on about trades and investments and meetings and stuff.... all fast paced.... Wall Street Chic.... *Snap*. It’s funny ‘cause it’s another part of my world that I miss... it just seemed sorta foreign, in a way, like he was in a limo pulling away from the curb and I was running along the side trying to keep up.... just strange not to be there.
I have such great friends and such a loving family.... I really am a most lucky guy. I also want to share it - if anyone knows of anyone that is going through cancer - tell ‘em to e-mail me. I would love to do what ever I could to help and guide and just be there for them just like so many angels are here for me. After all, that is what it’s really all about..... loving each other. And when you think about it - strangers are just folks who just haven’t met ... yet
23 January 2000 :)
Talked to Ricky and Jilly today. They told me that they are getting an amazing ice storm in Atlanta and it sounds beautiful, (Ian is sunbathing by the pool).... heh. Jilly was tell me stuff and making me laugh, she always does; say’s it’s her job. :)
Marv called today, God is that guy a fighter too. They tried to tell him that he only had so long to live and he just will have no part of it!! That IS the spirit..... it’s the only way to be unless you want to just give up.... go gently into that ‘goodnight’ .... Not Marv and not me; FUCK THAT. It’s a mindset.
I also spoke with Ross, He told Ian not to worry about the treatments taking away too much of my energy... said they would probably just bring my energy level to where everybody else is. He told me that he really likes the way I write..... I started to feel all puffed up, (see, the cancer hasn't spread to my ego... hrm.) He said that others could get something from it too..... I sure hope so.... be kinda nice if somebody did.
Things at home are going along as usual.... Seems that Mariann went out to dinner with Robbie and left the boys at home, ‘cause they didn’t want to go.... ordered them pizza instead. When the pizza arrived the boys put it on the kitchen table and went off to finish their Nintendo game. When they came back they found two contented dogs. Yup... seems 'Scruffy’ and ‘Buddy’ had taken the pizza.... eaten the cheese and the sauce, torn the crust to shreds and scattered the pieces all over the place. Shawn was furious - when I had called he and Trever were in the midst of trying to clean the kitchen before Mari got back..... and neither one of them had dinner yet.
Shawn said that I "gotta get better and come home." Seems the other day his Mom (Who is staying in the house while I’m here in Tampa getting treatments) had made my bed with fresh bedding.... “...and you know Dad” Shawn said, “she doesn’t let Scruffy sleep in your room while she sleeps here, ya know how she is with dogs. No sooner is she done than your dog hops on the bed... Mom was telling him nicely, “Do you belong there - get down” - and he just looked at her and peed on the spot, hopped down and walked out of the room. Next thing ya know Mom’s chasin’ him all over the house. So ya gotta get better fast Dad” I don’t know what that all sounds like to anyone else.... but that is MY world.... and it never sounded so good.
22 January 2000 :)
Had an OK day.... sleepy and a bit queasy at times, (no problem, I can take it). Dan’s brother Bill told me about Tarpon Springs so we went. It’s a really pretty place, lots of Greek stuff, it’s along the coast with boats and little shops with signs that boast they sell “unique” gift items - and they all carry the same stuff. Sorta neat though. The food was good and get this - I ate shrimp and didn’t choke - haven’t done that in a while... have no idea why.
Oh and an interesting thing - Yesterday I think that I wrote that I smelled differently - but I don’t. Everybody says I am the same. But I do smell different TO ME.... my sense of smell is wacked - I’m told that happens when you’re on chemo. That’s one of the reasons that folks goin’ through this lose weight too.
I mudded for two hours last night - Wow is that a tough game. I am determined to get the hang of it though.
21 January 2000 :)
I slept through the night for the first time since I was told that I had cancer, (the 14th of December).
As soon as they hooked the chemo up I felt like the Calvery had arrived.... I wasn’t just fighting this alone - I have a killing machine on board!. In the office I go to in my mind... to meditate... I have a big WELCOME banner for the soldiers. I visualize them looking like the creatures in the Steven Spielberg movie, “Longoliers”. Like psychotic packmen like things that have rotating razor blades for teeth and they only eat cancer.... yeah.... chow down boys! They took off the pump today after the radiation treatment..... phzzzzzzzzttt. :( I can’t wait ‘til Monday... that’s when I’m gonna get hooked up again. I don’t sweat it though - it lasts for 48 hours in my system anyway.... so there cancer!.
Yup... drugs are my life these days. I don’t care about the tiredness, or the occasional nausea, or that my breath and skin has an odd smell... I just don’t smell like me... I smell like new clothes or something.... like when you put on a new shirt without washing it first, THAT sort of smell.... Not offensive just odd. (Now there’s the story of my life condensed into four words - Not offensive just odd.)... hehe.
I’m another day closer to getting home and being with my boys, playing with my dog, seeing my friends in New York, going to work, riding the train, shoveling snow in 25 degrees below zero weather, dealing with taxi drivers, fighting the crowds and enjoying the chaos that I call my life... only from now on and forever it will always look sweeter and I will savor all of it and never just fast look over something.
I’m another day closer to kissing my twins goodnight.
20 January 2000 :)
TADA.... Did my first chemo, (called 5FU). It was EASY! The nurse put the needle in the Porte cath spot - didn’t really hurt at all. That was it. The ‘pump’ really looks like a baby’s bottle in a way and there is a long thin hose that goes to the needle that’s stuck in the Porte cath. So far I’m still in the , “Gee this is interesting.” stage..... hehe... might as well enjoy it as long as I can...eh? The nurse explained stuff me. Seems that all my body fluids are now toxic... (that defiantly provides a warm fuzzy). She told me that sex was OK as long as I wore condoms - I told her I’m already seeing someone. (she didn’t get it right away... chuckled later)..... and it went on from there.
When that was all done I went to radiation and got zapppppppped -- what a piece of cake that is. Hey - they even have a picture of “a piece of cake” on the ceiling.... heh.
I feel SO MUCH BETTER IN MY MIND - ‘cause now I have some real kick ass stuff going all through my body to destroy the cancer.... YEAH! We all went shopping after we left the hospital to celebrate... (retail therapy)... If this place has nothing - it has malls!
19 January 2000 :/
The last day before I start my treatments. Once I begin, it is suggested that I stay away from public places so I don’t get germs. Or I am told I can wear a mask over my nose and mouth..... yeah - that’s an option..... not even if Jean Paul Gaultier came out with them - OK?
Went to Disney World, (after my own home it’s my favorite place in the world) I was happy and sad to be there..... see.... it’s always been a magical place for me..... always. When I came as a child, I fell in love with it and I’ve never stopped. I come here often. I marked my growth here.... Dad took me all over the Magic Kingdom as a boy.... he’s not alive anymore..... from cancer. I’ve taken my kids all over too. When Ian and I married we came here for our honeymoon. My sons all know that they will find me there when they dream - so we can all play. I even have it written in my Last Will that when I die I want to be cremated and the majority of my ashes be spread over Disney World.... around the castle.
But this was the first time that I had been there with cancer. It just brought that whole - ‘Eternity’ thing too close.... I mean, with God's help it will be well after I hold my great grandson.... And even if it is that far away I understood emotionally..... There will be other crowds ... of other people and I will be flying around and cutting the lines and having a magical time and all... but now it all seemed too real... too near .... I found myself turning around, looking at all the buildings that were always like magical friends to me, and silently asking, begging them really, to please help me, that I needed their help now.... to use some of their magic that children give them, by loving them so much, to help make me better.
I’m very homesick right now......
Funny thing is after you cry you feel stronger..... crazy huh? I’m OK now and ready to do my walk and go to sleep and go see what radiation and chemo really mean.... and yup... I’m scared too..... be a liar if I said otherwise..... but I’ll do it and I’ll do it well 'cause.... well, I just will!
18 January 2000 :)
Well, today I went to get the sites and markings that they needed to get the radiation going.... all done... ready for Thursday. Ian and I went all by ourselves - that was sorta fun..... in a let’s go to the hospital all by ourselves sorta way..... hrm... might just be time to revisit the “Definitions of Fun” handbook again.
We might go to Disney World tomorrow after all.
All day long I could not stop thinking about what my friend Bret did.... Just take a look at his photo.... (A Warning: not everyone gets to look this good bald... God’s knows I don’t.)
17 January 2000 Scrumb, My Scrumb :)
The most amazing thing happened early this morning around 3:00. (The pain medicine must have a codeine base and seems to give me more power than Super Man)
Anyway... I was playing around on the computer and found Bret was on too. We talked for hours and he casually mentioned that he had thought of me today. Then he told me to check out his website (Hey I practically live in Scrumb’s Domain, his website)... so I did. He had done something so beautiful that when read it I started to cry...... really and truly cry.
You see... after all the sadness that I had to handle earlier today ... here I was reading about how Bret, a seventeen year old - strikingly handsome - talented writer, who lives in Canada's British Columbia.... a guy I’ve never even met, mind you .... had shaved most of his head today with me in mind.... so selfless and supportive - is that a beautiful thing or what!!! He even made a link to my site at Scrumb.Com - Which is an honor all in it’s own...
It’s really one of the kindest things that anyone has ever done for me and I will never ever EVER forget it. I’m gonna be Bret’s friend for the rest of my life! :)
16 January 2000 :(
Whew.... what a fucked up day this one was. Began with me talking to Marv Hecker, my friend who is going through this too. We were talking about how important family support was in helping us get through this. Then came ”The Nancy Show.”
It started off with me enjoying Ricky and Jill .... then I went inside..... the girls were swimming...... Everybody was out by the pool..... Aunt Toni-Ann was talking to Jill and I saw Mom (Nancy) sitting ... ten feet away ... smoking a cigarette. I was angry - I opened the sliding door and told her to, “put the cigarette out or go to the front of the house - NOW.” And a long exhausting emotional odyssey (that I shall always remember and refer to as ‘The Nancy Show’ ensued)
I was furious that she could be so insensitive - (the smell scares me - just does - she knew that) we already had that discussion.... And she’s read this journal. I was also profoundly hurt that she didn’t give a damn about what I was feeling and going through..... I expected her to do what ever she could do to ‘protect me’..... Meanwhile .... She was ticked that I had ‘told’ her and not ‘asked’ her. LONG STORY SHORT: At one point the star of our show had a reservation on the 10:10 heading back to New York...... by the end of the evening we were playing a game of Gin-Rummy...... aren’t parent /child relationships fun?..... “schizophrenia and you - great together!”
I don’t think I’ll forget the hell that I had to deal with today.... unless I get a brain tumor or something.
15 January 2000 :)
Well today I acted like a big jerk. My brother Ricky and Jill came all the way from Atlanta to see me. Before he came he asked me if I had wanted to see the girls, (he has three little ones) I said no, please.... absolutely not. For one I didn’t want them to get scared by seeing Uncle Gino all scary looking and tired and secondly I didn’t think I’d have the necessary energy to play with them, or be up to the rambunctiousness that is a child.. (plus I was sore).
Well when he showed up this morning it was with kids and all. He told me to just go into the bedroom while they say hello to ‘Grandma’ ‘cause then they were going with Jill to go out for the day. After the children left I went up one side of poor Rick and down the other. He was great... waited for me to purge all my frustrations then asked for coffee. We went out for a walk and talked... (did six miles today) He told me that I should reconsider and see them.... that it would not scare them as much as not seeing that I was OK.... hrmm... Made sense. He told me that he knew I would ‘get over it’ - and I did. He is one hell of a great brother - I’m lucky to have him! I apologized to him repeatedly for being such a schmuck.
Best part: Picture this - He and I are facing each other and he asks me if Ian and I want to have supper out all together. (Just then Olivia comes behind me doing cartwheels... I can see her peripherally) ... Ricky’s looking right at her, but just stares calmly at me (he thinks I don’t see her)... As I gaze down at the floor and answer his question with, “Nah, I think I’d rather stay here and enjoy the peace and quite... you understand ... don’t you?” I look up and I catch him, for a split second... his face is contorted in an exaggerated, desperate manner he’s begging her to “STOP” (She must not have seen him ‘cause she’s still doing cartwheels) But when he notices me looking he instantly looks calm again.... I busted out laughing... muahahahahaha
14 January 2000 :)
Wow. Today marks the first full month that I’ve known about the cancer. Hummm.... what’s the right gift when one is celebrating their first month - is it plastic or chemo? Must be plastic ‘cause I got a brand new Porte Catheter today. (For those who don’t know what that is... it’s like... OK, you know the top of the glass bottle that they stick the needles in and draw from? Well, it’s like that... rubber and all... only it’s about an inch round and goes under your skin and has a tube that goes into a vein... or something. When I get the chemo they can stick the needle in that instead of having to start an I.V. all the time.... cool huh?) It was a wild operation too. They brought me in on a stretcher all prepped for the surgery and put me on the operating table. It was kinda neat to be in an Operating Room again... See, I worked as an orderly in the OR through college.... this was a real sharp room too. I was instantly brought back to those days and the fun of working with such a tight group. Sorta like a family... they where great times for me and I cherish them.
They gave me the stuff to dope me up... only it didn’t. What ever they were using had the sort of opposite effect. yup yup yup... I was ready to assist already. With two very notable moments that were extremely painful... and I mean Extremely... the rest was a piece of cake. I was totally aware of everything and was talking with crew. I mentioned to Richard Karl the main surgeon that a mirror would be neat so that I could watch... he said that would be a bad idea ‘cause then I would know how to do it on my own. I laughed. The other surgeon asked me what I did.... I told him... and he asked me about the about the pros and cons of his investments - Government Bonds! He’s too young! I told him that if he really had the percentage that he had mentioned in Government Bonds for his retirement... then he could be in worse shape than he thought I was in. The whole room cracked up. Richard kept telling the anesthesiologist to give me more stuff, “..he’s a big guy - and he’s wide a wake” he said three times or so. The anesthesiologist would only reply, “I’ve given him all that I can - I don’t know what to tell you”. If the guys I work with only knew that I was talking about investments with the surgeon.... literally while he was operating .... they would laugh their asses off.
I really miss the gang at the office.... they really are such a fantastic bunch.... each a character in their own way, aren’t we all... I thought of the them while I was in there ‘cause I realized how lucky I was... that I still get to work with a tight group that’s like a family... Sorta like my days in the OR only now. I cannot wait to see them.
Ian and I treated the entire OR and the Recovery Room Staff to lunch (we had 15 pizzas and soda delivered).
As Ian and I were getting ready to head to the lobby the fire alarm went off - we both looked at each other and said, “Mom?” then we laughed having pictured my Mom sneaking a cigarette and tripping the detectors.... we were still laughing as we came upon her and Aunt Toni-Ann sitting in the lobby - they were laughing too - ‘cause they knew what we were thinking... hrmm.
Ricky and Jilly are in town to see me from Atlanta - how cool is that? I’ll get to see them tomorrow.
13 January 2000 :)
Woke up today feeling good and full of fight..... errrrrrrr.... look out. I went to bed last night and worked in this ‘office’ (turned command post) that’s in my mind... sort of a meditation like place... go there every night... have for years. That’s where I organize all the stuff to do the next day. Somebody came up with a plan to distract the cancer cells with a musical number...... it’s dark then suddenly there is a giant spot on the Supremes who start singing ... “STOP"... (While the army attacks from the rear.) And I’m not even on medication yet....hehe.
Got to the hospital and waited to see the surgeon.... and waited.... and waited.. (Hospital time). My Mom taught me so many things that were now starting to ring through my ears, “If you don’t open your mouth you’ll never get fed.” and “The squeaky wheel gets the oil” - and I was ready. I was prepared not to like this doctor when I met him and was really considering to just get my stuff and go back to New York. When I finally met the guy - I liked him right away. He lived in New York too - he was born and raised in the Bronx and we hit it off. I told him of my concerns about the procedures taking too long and a great thing happened.... He told me that someone had canceled for tomorrow morning for the same ‘Porte cath’ surgery - could I take his place? Cool! That’s when I knew I could stay here.... That’s when shit started to move - He had me taken personally to the blood lab... and there was no wait - they took blood. Then to the Pre-Op and they got things set up for tomorrow.. on the spot. Turns out Dr. Richard Karl is the Chief of Surgery..... very cool. :)
I took charge... I went from there to see Gloria in radiation - told her the update on tomorrow’s scheduled operation and got her to organize the date for the ‘marking’ and ‘CT’ for the radiation - Tuesday!..... Great.... Now lets schedule the day to begin radiation - Thursday - Good!..... Then I went to see Valerie, who was supposed to have coordinated all the stuff that I had just pushed through..... heh.... I told her what I had done and asked for the date that Chemo was going to start - she paused and stammered that “Dr. Kvols would have to set an appointment with you to discuss the effects of the chemo. And we might want to set that up sometime next week after the “markings’ are done” I told her WE did not want to wait at all - WE want the appointment to discuss ‘whatever’ RIGHT NOW! She was hedging when I spotted Dr. Kvols leaving by another door and cut her off and ‘cat-called’ to him -- “Hey Larry - could’ya come here a minute” and I preceded to tell him ‘right where the bear shit in the buckwheat.’ - - - I have the appointment tomorrow - Chemo will begin Thursday too.... heh .... Thank you Mom!
I listen to Zig Zigler’s motivational tapes... tape training... I love the guy. On the way back we passed the window with Mother Mary again... it’s on the way to the house. I am excited ‘cause I know that I’m gonna beat this thing.
12 January 2000 :(
You wanna know when tap water looks really good.... when it’s morning and you’re ‘NPO’ since midnight - that’s when! Catscan time. (Not, of course, to be confused with that popular restaurant Mag “The Gourmands Guide to Chinatown” ....eewwww was that bad... hey - it’s early OK?
It felt like it took forever to get me started... see I’m still in that New York business think mode ..... gotta change gears and slow it down, relax. From what I can tell there is ‘real time’ and then there’s ‘hospital time’. Trust me when I tell you that there is absolutely no similarity. Since I had the time to wait I paced... I read... I played a GameBoy Aunt Pam had lent to me... and I talked with a woman.
She had great big eyes and no hair (just peach fuzz) and her face had a soft beauty that came , not from any makeup, but from somewhere inside, maybe from the courage it took for her to be there, with no hair, and no makeup. Anyway, I had overheard her mention that she was hungry and offered her some candy. We started talking and she asked me why I was here... I told her. She puffed up her chest and told me that she had breast cancer and that this was her first checkup - that her radiation was all done. After a long conversation they called for her. I asked her hurriedly if there was any tricks that she could share... she nodded and told me something that I will never forget ever and then she smiled lovingly at me as she walked into the back... the mysterious area that all of us were waiting to see..
After an eternity someone said my name and I was brought back to meet with the Radiologist. He talked with me about the things that I could expect... the burns and the lethargy and all. I asked him what he thought my chances were from a purely medical perspective and he said he thought I had a 30% chance of surviving it...... huh?....... I stopped breathing for a second.... had to play that one back for a second. He must have known that ‘cause he totally stopped talking... at least I didn’t’t hear much for a couple seconds all I could hear was my heart beating in my ears. (hrmmm uh 100 take away 30 equals... no wait... um ... 100...) When I heard him again he was saying that they were going to begin treatment, “..not this coming week because of Monday being a holiday but the next week”. I got a bit angry now and let him know that, “It’s been one fucking holiday after another”. He was a little taken aback and said something about the cancer having been there a while.... That’s when I stopped him short and let him know that I was tired of hearing that - someone else had said that too.. “It may have been there for years” I said, “but I only learned about it a month ago - and ‘it’ doesn’t take ‘holidays’” He softened, and reassured me that they don’t want to make any mistakes, that it’s better to be steady and sure then to hurry up and make a mistake. I tried to relax and I remembered what the woman with the big eyes told me before she disappeared: “It’s a decision. You will decide to live or not to live. I am going to keep you in my prayers - I’m going to pray that you decide to live.”
It is a roller-coaster ride friends... probably why everybody pukes.... as for me..... I just gonna kick it’s ass and then some!
11 January 2000 :)
Ian and I went out and explored Tampa at night. That was great fun - we were out ‘till 3am. Two Wildboyz out in the wild..*growl*...heh.
Got up at 8. Pacing back and forth..... waiting until 9 so that I can call the hospital ... again. Gotta get this show on the freakin road already. Finally got a call back by 11:00 and have a catscan scheduled for 8:00 am tomorrow morning. I will feel less anxious when this is in full swing.
Didn’t go to Disney, but had fun driving all around Florida. Me and Ian, Mom and Aunt Toni-Ann (the Fab-Four) doing silly shit and laughing at goofy stuff. Aunt Toni-Ann is thinking of doing a radio talk show.... good idea.
By the way - my hair is growing back and Ian asked me to leave a goatee - with long thin-line sideburns. Now I sorta look like a wrestler ... just not so big ... yet.
Ian said that he would have to be away from me for about two weeks if he took the Halston job.... we’ve only been apart one night in five years.. (which was hell). He said that he doesn’t want to mess me up if I’d be so sad and “to hell with Halston” .... that’s really good news for me ‘cause I'm afraid that I really would be morose with out my Buddy by my side. (and he heard the phrase, 'needy bastard' echo through his mind.) ....yeah :)
My friend Vince told me something that is so important. He reminded me that "Prayers and good intentions by good people works Magic." ... so true. There are so many good people who are pulling for me and I am forever grateful... geeze am I a lucky guy.... in a 'despite me having cancer' kinda way.... hmmm. :)
10 January 2000 :/
We did go out...at 2:00 in the morning - drove around with nowhere to go - trying to see - whatever. We talked a lot. Ian is getting frustrated and bored....me too. He said he might have to go back to New York to handle the Halston fashion show. They really liked the way he did the Bill Blass shows and are after him. I just don’t know how well I will manage without him.... I mean.... I can, but I will miss him too much.
Did not go to Disney - maybe tomorrow. I walked ‘around the block’ four times so far (4 miles) and I went swimming - that was wild.
Cancer is the Great Simplifier. At first I thought it was just trying to take away every dignity I called my own ....for some kind of mean spirited fun..... but when I think about it ..... really, think .... I realize 'dignity’ is just a bunch of complicated concepts and convoluted ‘rules’ that were invented to create the feeling of pride or superiority, about something - and I owned a bunch of those. Cancer just cleans them all away.... one by one ...with great speed. What stays in its wake is real - has integrity.... No bullshit - real. Maybe cancer is just trying to help us get the message to stop wasting our time on silly stuff. I guess I didn’t know Cancer at all.
9 January 2000 :)
What a sunny day today is...really pretty....I saw five geckos and a turtle. I walked ‘around the block’.... we drove it yesterday - it’s exactly 1.0 mile. I walk it at least twice a day, (today three times - Yeah!)- part of the regime - so is drinking the Ensure and Boost stuff, (which I like) - they taste good .....ummm ....like Yoo-hoo. The stuff I’m not that crazy about is the Weight Gainer 2200 from GNC. I guess its ok.....has every mineral known to man....just tastes like chocolate flavored newspaper......I mean - if it had any more fiber - they’d call it bark..OK?
I bought a really cool baseball cap that is suede and soft and is not adjustable - it goes all the way around. And Bret said that he might even link my site on Scrumb.com - That would be very cool.
Miss the little guys....hrm, at 15 I guess they’re not so little.....I think about them all the time .... Scruffy too. But that’s ok. This time will pass....just real slow.....every day really feels like it was a week...honest to goodness. Guess that’s how a dog lives and that’s why each year is like seven to them. I am so grateful that Ian and Mom and Aunt Toni-Ann have been here - What a great bunch they are. If you have to get cancer and go away from home, you should have these guys with you!
Ian was thinking we might want to go out tonight...and we might......I just am hesitant to go... out......a little shy these days.....I might though, after all - I don’t know anybody and when they look at me they don’t know I’m not supposed to look like this.....thing is.... I know.
We might go to Disney tomorrow - Ian says it’s probably a good thing to do before they put that porta thing in my chest. I don’t know though, if we go afterward I could always go to the exit of the Haunted Mansion, take off the baseball cap - open my shirt, exposing the porta thing and stagger out with my arms straight in front, (one lower than the other) drool descending slowly out the corner of my mouth....and growl something in a low, choppy voice like, “What a great ride” and really scare the shit outa the smaller kids waiting in line...(hehe) ....amateurs!
8 January 2000 :p
I’m up all by myself and enjoying my coffee out by the pool. Seems weird to be outside in January and be so warm.
There’s an intercom system that’s built in throughout the house....pretty cool huh? Later tonight Ian and I are planning on making ghostly like breathing noises.......we wanna see what Aunt Toni-Ann and Mom will do.......hehe :)
Today we went to a shrine....the one in Clearwater. Which was the most honest of all shrines....at least it was to me. For those who are not aware, the Virgin Mary is said to have appeared in the glass panes in what was a bank in Clearwater Florida. I am not an overly religious guy, I do believe in God and in being loving and kind to all people. I do adore the teachings of Jesus and Mother Mary and every one who is kind and espouses goodness. Hey ....I was raised with the Virgin Mary....and I pray to her all the time. So there I was being driven to the shrine and Mom was saying that she was so glad to go there with me, that she always wanted to go to one of Mother Mary’s Shrines, and how wonderful it would be......I just listened to her voice and in my heart kept thinking...”Wow, Mom must be really desperate”....But the truth is I would have probably done the same thing if our roles were reversed.
I’m not sure just what I was expecting.....something.....when we arrived it was a building with a drive thru and a window that does look like The Virgin. Next to the miracle there’s a brand new, two story, wooden cross - with Christ suffering on it .... (always hated those..... pried him off when I was a child...always thought he should get a break, that he probably suffered enough....ya know). Well there he was all carved and bleeding and trying so hard. Directly in front of window and cross (in the middle of a parking lot) there’s an area with plastic lawn chairs that’s all fenced in, and a girl all in white asking for donations and selling candles and stuff, and a microphone in the hand of a guy who was getting warmed up by speaking into it saying “testing....testing...” which I thought was the only really profound thing I had heard in a while.
Around the side there was another adventure.
The sign reads, “Mary’s Gift Shoppe”.......(ya know what - that really tells you the whole thing...but hey...you might as well read on since you’ve come this far.) ......ok ...... As you enter you see a tellers window, ya know, the glass with the circle thing you talk into, (the building used to be a bank) only now there are pictures of Jesus and Mary all over.....behind the glass. To your left there is a hallway with framed letters on each side telling about how the window became a miracle......there is a large picture of the Pope.......and as you round the bend you come upon an elevator that says.....”Mary’s Rosary Factory”, (which I was not prepared for to say the least) ....In the rooms next to the elevator was every conceivable thing one could buy relating to Our holy Mother, (who was on a real first name basis with the group who were running the shrine) .... all the stuff was for sale...and at prices that were designed to test your faith......best of all there where those big 5x7 inch “VISA / MASTERCARD’ plaques - they were everywhere.
I couldn’t’ shake the commercial that ran through my head, “WELCOME TO THE SHRINE OF THE VIRGIN, COME BRING YOUR HOPES AND YOUR DREAMS AND BE SURE TO BRING YOUR VISA CARD.....’CAUSE SHE’LL ACCEPT YOUR PRAYERS AND YOUR NOVENAS, BUT NOT AMERICAN EXPRESS. VISA WE’RE EVERYWHERE -- EVEN IN HEAVEN
For Mariann and Robby I bought a rosary ‘cause I know they will treasure it .......as for me....I took one of the plaques that said “Visa / MasterCard”. :)
7 January 2000 :(
Guess who’s a bald eagle?....yup.....I just went insane for a moment I guess and just started to shave my head, then it was just a matter of finishing the task. Ya know, with the shorts and the horizontal striped shirt - I definitely have a ‘Pugsley’ thing going. Ian, my blonde Ian, kissed my head and said it looked sexy, isn’t that sweet?......I’m really glad he likes the look....cause tonight when he’s asleep...I'm cutting HIS hair....heh heh.
What a wild trip today was. A real roller coaster ride, emotionally speaking. I am hesitant to write this, because for most of you this will not make any sense but it will to those who may also be going through this garbage. The rest of this may give someone else a chance to understand this process. It involves everyone who loves you and who you love and spares no one:
I felt so helpless and alone earlier today....I reacted by taking charge...by shaving my head. But then the site of me in the mirror made me so sad that I had the hardest time looking, without getting all wet eyed and stuff. The more I looked at Ian looking so handsome the angrier I would get.....(I know it’s not nice or right or even make sense, but it is as accurate an understanding as I can tell). The way I was thinking is - we are buddies - where ever he goes I go and where ever I go he goes. Well I gained so much weight (had to for the upcoming treatments).....he gained weight too......but then he started to declare that he was taking measures to lose ....OK....no problem, the CHEMO is my diet plan.....but then he got his hair all blonde and I shaved mine off.....and I look scary.....and I feel I’ve lost my sex appeal too......yeah.....I’ve become a monster.....and my buddy who is suppose to go where I go.....didn’t! He left me ...betrayed me - he didn’t get cancer - and he didn’t look scary (and as asinine as this sounds it was really how I felt).
I am so glad to tell you the feeling passed! That’s what I mean about the roller coaster ride. It’s a fight that doesn’t stop. Sounds crazy but it’s true. It’s like your own mind and feelings can defect to the cancer side and try to get you to give up and call it quits. THIS IS WAR...AND I’M A SOLDIER Thankx to Mariann and her much needed reminder - I am no longer a private....I’m a Sergeant!
The day ended really well...Mom and Aunt Toni-Ann, Ian and I all played cards and laughed and made up stupid jokes....I’m gonna be OK :)
6 January 2000 :)
Let’s see...... Ian bleached his hair...yellow, (as in canary)..... I guess with everything that’s going on....and my being off the patch, (move over Linda Blair)...Ian must have figured that anything that offered even a vague chance of having more fun was worth the shot. I have to say he looks handsome though.
Mom thinks that I should go to Disney World, to relax and have some fun....before the real battles begin. Ian said that he may beg out. He said that, whereas under normal circumstances it may be fun, the thought of driving with me for two hours in a small car, and waiting with me in long lines, in the heat, while I go through nicotine withdrawal, could not be construed as either relaxing or fun and that using them together in the same sentence was “way misleading’”....huh.....So stay home banana boy!!! :)
Changes can be contagious. When I saw Ian change his hair I wanted it too. I came real close to shaving my head, but I thought... no sense in speeding that part of it up. After all, in preparation for all this I’m drinking ensure by the barrel - gained eleven pounds in about two weeks (and climbing)....so unless they’re holding auditions for the part of ‘Fester’ in an upcoming Addams Family flick - I’ll just drop the razor and back away from the buzzer. OK?
That’s another thing....I can sorta understand the, ya know, ‘cell.. mutation’ bla bla ..... CHEMO with radiation ....vomiting...burns.....hope you don’t die from it stuff. But what the hell's up with the ‘Tales From the Crypt’ look alike contest? Is that really necessary? I’m not sure what worries me more, and I’m surprised that cosmetic companies haven’t spotted that hole in the market....”Is he alive or not? Maybe it’s .....”
5 January 2000 :(
The H. Lee Moffitt Cancer Center is an amazing place. Not just the caliber of work, which is renowned -- the architecture - it’s fantastic -- looks like Oz.
It isn’t Oz...it’s a cancer center...and I have cancer. It still sounds so unreal to me sometimes. See... I have these mood swings, (have not had a cigarette and removed the patch this afternoon....to get better results from the chemo I’m told)...I took it off. So sometimes I get a little depressed. It doesn’t stay long, but they happen, the feelings come and they seem real, like, “hey - you can trust these feelings” -- but you can’t. It’s just part of the process - it sucks!Anyway, I met with Dr. Cvols, (Coles) the oncologist. He told me that I could expect to get chemo (administered via a pump - around the clock) and radiation treatments 5 times a week -- this will go on for 6 weeks and then if all goes well they can operate -- then I’ll get more chemo and radiation. All in all it looks like a three month thing. He seems like a sweet and kind man but he was supposed to say, “No problem - you’ll be outa here and home in a month”. ...heh
I miss home...my boys...Scruffy....my world. I talk to them on the phone and their voices are magic to me. Sometimes I wonder if I can hang in here...so far away I just miss them too much. I barely got used to being away from Kris - Kristopher is my oldest, he’s 24 now and lives in Danbury... he grew up overnight as I recall, (I’m almost certain this recollection is not the same as his). Now Trever and Shawn are in that same hurry ....huh.....so was I.
Hey guys, a little note from me: I adore you and my heart is with you..... +1 :)
Mom and Aunt Toni-Ann landed in Tampa and Ian and I picked them up. It’s so great to see them. Aunt-Toni has been wonderful. She told me all kinds of stuff that I will need to know - from when she went through it too.
I don’t get some things. My Mom, who I love so much, and who loves me so much, just can’t seem to understand that I do not want the smell of smoke near me.....the smell scares me.... sounds silly - but it does. I asked her to respect that, and let her know that there could be no smoking inside the house. She knew this before she even came. Those who know her - know she ”had to have one.” Those who know me - know I told her the next time I’m putting her on the first flight out. Do I mean it?....Yup!
See, it's just one of the gifts that cancer gives: As much as I adore her, I have NO time, energy, or desire to deal with any of that shit.
4 January 2000 :)
It’s 9:55 AM - I never went to bed last night, just to overwhelmed.
Just getting settled in. Watching the big birds that walk around here - I don’t know what they are sort of like flamingos, but all white.
Spooked Ian so bad that now neither of us will go near one wing of the house......hehe....I’ve scared him three times - good ones.
It is enchanting here, really. If I were my old self I would be having a real ball. When I considered why I’m here the place is just nice enough.....I just wanna get cured and go home.
3 January 2000 :\
Got up..showered. Went next door to a ”Waffle House” ...For those who may not have an understanding as to what that means, I shall try to say it simply: It’s a little slice of heaven........deep fried in what appears to be prewar bacon fat...and slopped on a dirty plate...with grits of course. Yes it’s gross, but it’s tastes good and it’s part of the whole 'southern trip thing'.
We stopped at ‘South of the Boarder’...had too ...cheesy - yup....but it’s tradition! At least it was to me. Brightly coloured scattered buildings that each vie for you, the brain dead tourist, to come...come in ....and buy. Row upon row, five shelves high of the most useless crap you ever saw: Heads of Jesus made to look like they were carved from marble (with seam marks all over) sitting next to 3 foot rubber alligators that squeaked and Mexican paper mache fish .....oh, and look......a spoon rest for the stove that when not in use, was actually the Virgin Mary....how wild....she carried, birthed and nurtured a ‘savior’ - and somehow, somebody, somewhere made sure she ended up in the kitchen after all.....I almost laughed out loud.
Ian and I pondered the effects of what long term exposure to such tasteless chatchkas could do.....We agreed to be careful....and that if either one of us were to actually try and BUY anything to make sure that he were rushed, by ambulance, to the nearest Neiman Marcus.
We were having a ball goofing around and cutting up...just Ian and me .....Buddys. :)
It was almost midnight by the time we reached the “little condo” near Tampa.
Neither one of us were prepared for what was waiting for us. It is unbelievable...Two Grand double-doors are the entrance to a terra-cotta tiled foyer that’s bigger than my first apartment! The living-room is like 18x25 with a slanted beamed cathedral ceiling - with a brick fireplace in the center of two double wide sliding glass doors that overlook the in-the-ground pool - that’s lit from under the water..(enclosed entirely with a perfect ‘conservatory style’ screened framework that has the most exquisite lake and foliage for a backdrop! There’s more. The Kitchen is cavernous with a vaulted ceiling..(that conceals built-in lights and has a breakfast nook overlooking the lanai and adjoins to the built in office,..(from where I now sit typing))...the office connects to the Master Suite that has a walk in closet that could double for a spare room. beside all this there is a dining room, another wing that has two other bed rooms, it’s own bath and a laundry room that connects to the two car garage. The landscaping appears to be lush...although as yet Ian and I refuse to leave the house.......it’s dark and about an hour ago we were shining the flashlight through the window in the back looking for gators.
Bernadette has no idea how deeply her generosity and kindness has touched me I can not convey them here because the words have not yet been invented in all of mans history that could even come close.
2 January 2000 :\
In a little while Ian and I will head off and start our adventure. Something funny....I’m getting ready to head off and slay my dragon....and it dawned on me that I started courting this beast ...(started smoking that is)....on January 2nd 1978......22 years ago - to the day! Huh
There was a delay that was unavoidable, so I took the chance to walk Scruffy..(he had to stay after all....”besides they have gators in Florida”...guess it’s best. We walked where we always did - down the road to the bend, pause at the “corner of smells”..(as I called it ‘cause all he does is sniff and sniff) around to the middle of our horse shoe shaped road and past the middle school. We stopped at Mrs. Shannon’s, said hi, goodbye....did the same at Mary’s, our neighbor.....what a sweethearted lady....and what a cook. Many was the time that she would appear at our kitchen door asking us to, “do her a favor” and test some delicious meal that she had prepared. I didn’t get it at first but soon realized - Mary was another angel. Didn’t want us to fuss with cooking, probably knew we couldn’t, saw the endless take-out containers. What the hell do we know about cooking.....we tried....we didn’t really hit the mark too often. Hell in all the years we‘d lived in New York I could really count on one hand the number of times that we prepared our own meals.
God was leaving hard....this is so fucked up....such a waste. But hey, we were going... so it was real.
We drove for hours just Ian and me, alone, like the old days. We joked around, listened to tunes, shared our thoughts on all sorts of stuff....it was exciting and the pain of leaving disappeared. We listened to the cassette version of “the Horse Whisperer” ....it was great....much better than I thought a cassette ‘book’ would be. Went on for 12 hours finally stopping in North Carolina...I drove...Ian tolerated my driving. When we stopped for gas the last time before bedtime..it was at a station that offered a car wash too. How neat...we filled the pathfinder..(our trusted stead) and decided to give the ‘ol boy a bath...(just like the horse in the story). We were cowboys...adrift and alone in the Midwest..(I know, I know - just go with it) As we punched in our code and entered the soapy corral the brushes whirled on each side and at once Ian and I realized that we had left the side mirrors of our black beauty, in their normal position. “OhmyGod the mirrors” ....we both said it ...and quick as lightning opened the windows to save the mirrors by tucking them closer to the car.
We badly miscalculated the timing of the suds however and fast realized that our concern was ill founded and now...from both sides...thick wads of soap foam were being forced onto the car ...and all over us. We panicked and tried to get the windows up as fast as possible...but electric windows go at their own pace. All there was left for us to do at 1:30 in the morning was laugh our asses off. When the sleek black pathfinder rolled out of the car wash he looked fantastic. Then it came to a stop..the doors opened and we were finally able to get out - blue foam all over!...and laughing like we were nuts. The guy station working the station just stared, but you knew he was thinking: “dumb yankees..don-neeven know how-da warsh a damn car!”.....hehe
1 January 2000 - New Years Day :) :(
OK...for starters the lights stayed on! I’m hardly surprised.......although....I do have a basement full of bottled water...cases of vegetables....canned meat, milk, candles, medicines.....Hey, anybody wanna buy a Generator? :)
Well.....this is the last night for me....for who knows how long... to sleep in my house, and hangout with the guys at night...(a time that is set just for each guy...forever to be known as ‘cuddle time”)....*sigh*
I don’t know yet ‘cause it’s only 9:30 pm, but I’m pretty sure tonight will be a bitch...(ya think?) I’m fending off homesickness as I’m typing. Gee, I wonder how old you have to be, at what age exactly does one grow up?...(I’ve been waiting for 41 years)...ain't happened yet.