What did I tell ya!

No More Wall... This should be my only problem...Now If I could only get ther to put up some FUCKING CURTAINS after 16 years of marriage I'd be on to something!

Here ya go

My wife told me she has PMS (Piss-off Me Severely) this week, and I seem to have CMS (Chemo-induced Maniac Syndrome) I bet she took more of the wall apart today...

Crazy Again

Why is it that just about every fucking night I don't have either a glass or knive or something at the fucking dinner table. It's bad enough I have to do practically all of the fucking cooking, tonight I go out for chinese food (because you don't take shit out to defrost even though you're home all day) and the fucking table isn't set right. Everyone else has a fucking glass.

FUCK

And another fucking thing, we've had this conversation like 4 times about the retaining wall in our front yard. It's there for a FUCKING REASON! To KEEP or RETAIN the lawn out off the FUCKING DRIVEWAY. Why must you keep taking it APART! DON'T YOU GET IT???? I come back after getting chemo yesterday and again you took down more of the FUCKING WALL.

Pictures from NYC

I had a little fun with PhotoShop with these photo's

Lincoln Center









Fountain at Lincoln Center












Building in front of Lincoln Center










Time Warner Building












Time Warner Building












Scultpture by Julliard - yes Lincoln Center again









If I EVER get an ass like this, I hope someone shoots me!

RAK

I did some good deeds today. I was driving home from work (yes, I went in) and I saw some guy walking on a highway carrying a gas can. I turned around and stopped and asked if he needed a ride. He say 'sure' and hooed in. I normally do not pick up people (especially guys) but I thought that if I was out of gas, I'd want a ride. I brought him to a gas station and back to his car. As it turned out, he is a NYC motorcycle cop. He gave me his name and work number and said if I ever needed anything, to give him a call (Ladies, he looked like George Clooney, if anyone wants his number....) It just felt good to help someone out. One more 'pat on my back', the toaster oven at work pooped out about 2 months ago. I stopped at a store today and bought a new one. I left it there with a sign that read 'Let Them Eat Toast'. It's the little things in life...

Back to My New Normal - Fucking Nuts

So yesterday was my 48th birthday. I really had a great time. I got a good night's sleep the night before, I kissed my wife before I left for work, I got a bunch of 'Happy Birthdays' from people at work (they were going to take me out for pizza - we do this for many people, but it was one woman's baby shower that day and being swamped with work, I couldn't justify taking 2-3 hours off), I had very many 'Happy Birthday's' from Blogging friends who I never met but yet I feel close to many of you. My horoscope was rather true which I find pretty freaky.

Phooey on paperwork and routine tasks.You've got bigger fish to fry.Life feels exhilarating and brand-new.Is there any way you could put off your chores for just a little whilelonger and revel in this feeling? Why not?

I mean, I have bigger fish to fry. I have to get the rest of this cancer out of my body. I've been living in limbo since February 04 when I was diagnosed. It's been a few months at a time as to what my treatment will be and what my status is.

put off your chores for just a little while
longer and revel in this feeling?

Why can't I? I do have a stong work ethic. I know I've been blogging a lot (sometimes from work) I try to sometimes set up the main part of my post the night before adn tweak it when I get in, which is usually 6:30 or 7 am. I'm only supposed to work 35 hrs a week, but I sometimes do much more. I also take days off for chemo and don't mark it as a sick day so it balances out. But I worked from Feb - Sept last year and had 6 months of chemo every other week and only missed the chemo days, plus I kayaked every day for 81 days. Rain, shine, chemo, no chemo. I found that relaxing, but I was obsessed to say the least.

Your imagination is one of your richest assets, but it's important that you don't let it spiral out of control, especially when it comes to romantic matters. It's pretty easy to get so caught up in fantasy that you convince yourself it's real. Take some deep breaths and ground yourself in reality before you make any decisions or commit yourself to something that might have many more layers to it than you originally assumed.

This really freaks me out because it is too true, especially about the romantic matters. I've been married for almost 16 years. Most of that has been good. I've fucked up a little (last year's incident with Kris - an earlier post) and Dana has fucked up too. She's been very supportive and has been there for me with all of this cancer shit, always wanting to do more, I tend to push her away at times because I don't want to have her worry too much. But I feel like I've had very strong feelings for a few women I work with, a few of my nurses and even a few 'blogger types'. I feel like I've gotten most of this under control. I talk about this kind of stuff with my therapist, who is a woman who, you guessed it, I'm somewhat attracted to also. I know that chemo which also contains some steroids plays MAJOR tricks with my head and my emotions. Some women I've talked to say it sounds like I have PMS.

I had a strange-ish thing happen yesterday/today at work with someone. She was very supportive with the whole Kris thing last year and with having cancer, she's always been there to listen and I kept my distance emotionally from her to some extent because we both know how I can be. I always seem to start to well up though when I talk with her. Anyway, I stopped by to bring my bamboo plant over for a 'playdate' with her plants. She has a green thumb and my plant has been looking a little pale. I think she was amused by how I phrased it, so I left the plant there. I got it later and sent an email saying thanks for the playdate and I signed it Bamboo(zled) which is weird, but I thought it was a funny name for the plant, but to bamboozle someone is to like trick them. Anyway, she thought I was leaving it there for a week or two so she was wondering why I tool it back. I also felt strange because I was somewhat hiding my birthday (couldn't you tell by my bloggin posts? How egotistical was that!) and I didn't want it to be a real big deal, although I had my doubts last year if I would see another birthday so I think I was in rare form all day. I stopped by today to sort of explain my strangeness to her and of course she didn't think too much of it, but she is real intuitive and just knew something was not right. So I said that I'm doing ok (which most of the time is true) but I've been keeping a low profile. But I feel like I've been keeping away from her, but she told me that she may have things going on for her too and 'it's not all about me' and that stopped me in mid sentence and I said 'you're right, it isn't all about me'. I guess where I'm going with this is that I sometimes think that I interpret people's reactions as it being about me, when it isn't. I think it's great it isn't about me. She's also told me 'I think too much' which I do, and I don't think about the right things. I obsess about the wrong stuff. Even looking at my horoscope it says I can let things spiral out of control. I have to try to stop that, it's not healthy. Well folks and new readers to my blog, this is the other side of me. I'm probably thinking too much now and most of this must sound rather insane. Just wait until next week when I get the double dose again. I also have a CT scan coming up in 3 weeks so I'll get kookie for that too. Don't get cancer folks, it sucks big time!

I'm not afraid of having Birthdays, I'm afraid of not having them!

Phooey on paperwork and routine tasks.
You've got bigger fish to fry.
Life feels exhilarating and brand-new.
Is there any way you could put off
your chores for just a little while
longer and revel in this feeling?
Why not?

Your imagination is one of your richest
assets, but it's important that you
don't let it spiral out of control,
especially when it comes to romantic matters.
It's pretty easy to get so caught up in
fantasy that you convince yourself
it's real. Take some deep breaths and
ground yourself in reality before you
make any decisions or commit yourself
to something that might have many more
layers to it than you originally assumed.

09.27.05 SK Revisited

For those of you New readers, here is a post I did a month or so ago about my trip into SK for a treatment.

#36 Done

It seem like a long time since I've posted here. I had a rough week with the last round of chemo. Major stomach aches that went from last Tuesday night until about 5 am Monday morning. I've been going on with about 4 hours of sleep each night (and we don't even have a baby anymore). I went to NYC for my 36th chemo today. It was the single dose so it wasn't too bad. I got out at 11 am and took the bus crosstown back to my car. On the bus, I noticed that I would see people walking down the street, then the bus would go maybe a block because of traffic, then I would see the same people walking by the bus. So I got off at Columbus Circle and had a sandwich on a bench, then walked through Lincoln Center and by the fountain and back to the car. I do enjoy the city and all of the people watching it offers. My stomach has finally settled down. Tonight, I got a call from my friend Rick (see link on his name), he's sending guys over this week to close my pool for me. Too much, too much. The funny thing was that I was going to stop by his shop today to talk to him about what I need to do to shut down the pool, plus I am going to be building him a kickass website over the winter. There goes my psychic connection with people again, I love it!
Back to work tomorrow, I hope I sleep...

Loose Lips...

This doesn't surprise me, and I'm not sure it is blog-worthy, but here goes. Last summer when I was in the midst of all of the cancer stuff, being diagnosed, undergoing chemo etc, I was real fucked up emotionally and my feelings were all over the place. I had that incident with the woman I worked with (which I think is still not common knowledge) and I also talked to too many people about what I was going through, both physically and mentally. I sort of let it all hang out. I know I made some people real uncomfortable by sharing so much. I gained some friends and I lost some too. I don't blame them, I don't blame me. I've learned (I think) from that experience. The other day, I heard from a friend about something I had told someone last summer in confidence. I don't remember making them swear on a bible or anything, but it was a sensitive, potentially embarassing thing that I wouldn't want to be common office gossip. It appears it did become that for a little while. My friend at work I trust like very few people I have ever met and I know she didn't say this to hurt my feelings or anything like that and I was glad she mentioned it to me becaue now I know that you really have to becareful who you tell what to. I gossip probably as much as the next person, but if someone tells me something in confidence, I keep it that way. That's how I am, not everyone is like that. At least I know why I get funny looks now ;-)
PS -Off to family function, I still have incredible cramping - I fucking hate this but it should be better tonight or tomorrow. Back in on Monday for the single dose which isnt' too bad...
Have a great weekend everyone

Wednesday...

Feeling rather crummy today. Today and tomorrow will be the worst days after the double dose of chemo I had this past Monday. I took it easy on the other med's they gave me and firgured I'd just ride this out and get it over with. It seemed like the new med's just put off the inevitable. I still had bad stomach cramps. My skin has cleared up a lot, but now it's getting too dry and my fingers and feet are cracking and almost bleeding. No 'Foot of the Month" for me Mo. If I can get my ass in our swimming pool tomorrow, I will have gone swimming in the spring, summer, and fall. The water's about 68-70 so I know I can go in. It's a pain in the ass with clearing the leaves all of the time.

The Day I was De-Livered

One year ago today, Sept 20th, I went in for my operation to remove my cancer. The prep for it, which I did the day before, really sucked. I don't know if anyone has had the pleasure of a colonoscopy, but I basically had to do the same thing as if I was having one of those. They give you this stuff to drink that tastes horrible, then after a few hours you pretty much evacuate everything you've eaten since the fourth grade if you know what I mean. Then you have to starve yourself for about 24 hours. The day of the operation I was real quiet at home. I was scheduled for a 5 pm start time with a 2 o'clock arrival. I went with my wife and my brother. They were talking, I was not saying much. I think they were trying to take my mind off of things but I remember being very focused. Last year it fell on a Monday. I had kayaked for 81 consecutive days (even through 6 months of chemo) and stopped on Saturday. I spent my whole summer preparing physically and mentally for this day. I also spent almost every night getting drunk. I had gotten so drunk one night (the night I told Dana about that woman at work) that I fell backwards into the bathtub when I was taking a leak and took down the shower curtain. I had never been a fall down drunk, I was always the funny, happy drunk. Dana was concerned because I was getting pretty hammered every night. I had a coffee and Kaluha the other week and 1/4 of a beer the other night, otherwise I haven't been allowed to drink. I miss it and I don't. Anyway, I'm getting side tracked here (so much for my focus anymore). I remember having to say goodbye to Dana and Larry and having to get into hospital garb. I insisted on bringing my spare eyeglasses because I can't see well at all without them and I wanted to know what was going on before they put me under. They gave me a little bit of a hard time, but they let me wear them. I had to take off my wedding ring too, that sucked because I've worn it for almost 16 years at the time. I also had to take off my necklace with a celtic cross that I've had for many years and my LiveStrong bracelet that I've worn since getting cancer. They wheeled me in a wheelchair and I got to see Dana and Larry again before they brought me through the doors and toward the O.R. I told them I'd see them later...It was almost 5 pm. I remember going into the operating room. It was real cold, I didn't mind. I guess they don't want the doctors dripping sweat into you. They covered me with this air blanket that had hot air blowing into it. I remember thinking how Dana would love one of these, she's often cold while I have shorts and a T-shirt on. It was kind of interesting in there, I never had major surgery before. There were many people in there and they all have masks on (to protect their identities). I was making small talk with many of them. I remember the room was rather old looking too. Not spotless like I thought it would be. It was a little after 5 when the surgeons came in. I had one for the liver resection and pump installation and one for the colon resection. The operation lasted until 2 am - 8 hours long. I vaguely remember seeing Dana and Larry in the post op room. After seeing them, I remember checking to see if I had a coloscopy bag, I didn't. They left my asshole where it was. I was thrilled. Going in to this I didn't know if they would give me a temporary bag, a permanant one, or leave things as they were. They wound up taking out 60% of my liver, my gallbladder, some lymph nodes, a section of my lower intestine (8 inches or so) and they installed a hepatic pump under my skin. I woke up again at about 10 am. They were on my case to start walking already. I have a scar that goes from just under my sternum to an inch or two above my navel, then it goes to the right for about 8-9 inches. I have another scar to the left where they put the pump in. That is about 5 inches long. The pump is like the size of a hockey puck. I'm used to it now. I also have a scar that runs from my navel, south to right above my 'whatchamacallit'. I felt like I was thrown down a flight of stairs. I did not prepare for all of the pain I would experience. The next 16 days in the hospital were real rough. I didn't eat for about 2 weeks, I was allowed only limited ice chips for liquid. Everything else was done by IV. The pain from the surgery was incredible (I'm still feeling the pain) and I had to try to walk everyday. It hurt so much. It took me forever to do anything. I remember the World Series was on so I watched some of that, the presidential debates were on so I watched some of those and Mt St Helens was erupting so I was trying to get inspiration to either pass wind (which was a prerequisite to leaving the hospital - funny, I'm usually asked NOT to do that) or to have a BM (I hate that term). Anyway, this is going on and on. The nurses were great, I met some cool folks. I had like 4 roommates. There is a funny story about one of them that I will post at a later date. I finally went home after 16 days. As soon as I got home, I threw up. It felt good to do it at home. It seems like yesterday, it seems like forever ago...I'm glad I'm Blogging ;-)

Another Blood Test

I had another blood test today. I've had them stick my finger so many times. I've been pricked more times than Paris Hilton!

I Finally Pulled the Cancer Card

It finally happened. I actually went to work today (Sunday) at around 5 pm and worked until 9 pm. I am working on this real pain in the neck project and since I won't be in Monday because of chemo, I thought I'd go in to see if I could get some stuff done, which I did. I left at 9 and was driving home. I did get a new-ish car and it ride nice so I really didn't notice that I was doing 63 mph in a 45 mph zone. Apparently Mr. Policeman did notice. I slowed down but he pulled me over anyway. This town is notorious for being strict with the speed limit. "The sign says 45 mph, not 46" is their slogan. So I pulled right over, got my licence, registration and insurance card ready. Mr. Policeman came up to me and right away I said that I realized I was going a little fast back there, to which he replied 'you were doing 63 mph in a 45 mph zone'. I said that I was just going home after leaving work and that I have cancer and I have to go to the city for chemo tomorrow. He took my cards and said he has to check on them. After about 3 minutes, he came back, handed me my cards and said to slow down a little. I said I'll slow down a lot and I thanked him. It's the first time I've pulled the cancer card but I figured what the heck, what's the worse thing that could have happened?

Saturday - one more day to go...

It's Saturday! Today is my 4 year anniversary of starting to work where I work, so that is cool. On the 10th of Sept it was my 1 year anniversary of being put on staff, even better. Today my oldest son (almost 12) had his test for a stripe in Tang So Do (a karate type martial art). He aced it I'm sure. It's been a pretty good week for me, physically and mentally. I have another day 'off' then I go back for the double whammy chemo on Monday. I dread it, I've blogged it before so I won't again. The good thing is that I can blog from the doctors office. What's even better is that I am beating this cancer. Screw the blogs! Although I do enjoy it and I had fun doing the MeMe. I usually poo-poo the MeMe type stuff but I decided to do it and break out of my 'mold' that I so often would keep myself in. A great benefit of cancer I suppose is that I make more of an effort to get my act together, I feel time is more important in that regard...

This and That, That and This

I'm feeling generally good. I still have a bit of abdominal pain, more from the operation (which was one year ago on the Sept 20th) than from the chemo. I did get a hernia in my abdominal wall a few weeks ago so that I suppose is making things worse. I don't know what the course of action is going to be for that. I'll ask when I see the Doc in person in 5-6 weeks. I think part of my better mental state is that I am getting some postitive things from therapy and I have been listening to the Bernie Siegel book on tape. He talks about the Exceptional Patient who I think I am. There are maybe 15-20% of cancer patients who refuse to give in and be a statistic, I want to be in that percentile. I know I can be...

Trying to Mend Fences

I work with a woman who, how can I put this, hates my fucking guts. Without going into too much detail, we were friends for about a year before I was diagnosed with cancer. We're both married. After I was diagnosed, she was very supportive and was someone I could talk to, she was studying to be a psychologist, and our friendship was going ok. I crossed a line and became emotionally dependent/attached to her. It imploded on me and I said something I shouldn't have (nothing nasty or vulgar) the chemo and steroids and the stress of everything got the better of me. She basically told me to 'fuck off'. Anyway, I've been getting the staring through me thing for about a year I guess. I almost physically ran into her a few weeks ago and out of a reflex said "Hi", I got nothing back at all except a cold stare. It bugged me because although she accepted my appology for what I said to her, I know she never forgave me. I brought this up with my therapist (my wife also knew what happened, I told her at the time and she understood) and my therapist asked me if I forgave myself, which I feel I have. If anyone's gone through cancer they may understand, it's an incredible mindfuck. So I/we have been avoiding each other for about a year. We work in the same department but in different aspects of production so we really never had to interact. Well, as fate would have it, we are both on the same project and we have to attend meetings together (in the same room at the same time). It was terrifying for me at first because I did not want to be in the same room as someone who I feel hates me, but my manager asked me if I wanted to attend the meetings representing our group and I said yes. I figured it was time to face the music. There was an 'negative energy' in the room, but it wasn't very noticeable. We didn't have to interact with each other so I survived the meeting. I've been to maybe 5 meetings so far. Yesterday I was there and 'my friend' had a wicked sniffle. I mean, she was sucking up snot like a 3 yr old. For one, it was annoying and I could tell she wasn't too comfortable either. I had to go to use the restroom and on my way back, I was able to find a box of tissues. When I came back in, I placed them by her and said something like 'it sounds like you could use these'. She either said 'Thank You' or Fuck You'. I think it was the first one and not the latter. When the meeting was over, she again said one or the other and I said 'not a problem'. I would have done that for anyone, but since it was her, it took a little more courage to make the move so to speak. I know this is not going to make things better and it was not my intention when I went to get the tissues. I just want to have it so it's not uncomfortable for me and I would really like it if she one day forgave me or at least understood what I was going through at the time. I try to be more careful who I confide in now. Most people really don't want to hear my cancer and I can't say I blame them...
...time will tell if she forgives me, life goes on.

What I'm Reading *

Here are two books that I am 'reading'. By that I mean I got the Bernie Seigel book on tape (which was recommended by my therapist, I've heard other people talk about it too) and the Wayne Dyer book on CD (which was recommended by a good friend who is also a 'therapist' of sorts for me). I have such a hard time sitting down with a book and reading it that I thought that I would try the audio versions since I have a 30 minute ride to and from work each day.













*any coincidence to any other bloggers who might
find themselves in a spiritual slump, is purely karmic
(karmic relief?)

A Cure for the Side Effects

I have just discovered that diving into a pool where the water is a brisk 65 degrees does wonders for the side effects of chemo. The only problem is that I can't type now ;-)

#34 Done

It's not quite 10 am and I am done getting chemo #34. This is a record, I'm usually not out of here until 12 noon at best.

This Weekend

We all know what today is and where we were when we heard/saw it. The world will never be the same, I feel less safe than I ever did. I don't worry about it, I guess that is part of my new normal too. Tomorrow is another trip to the city, I tense up going over the GW Bridge (that ain't George Walker either), then I have to ride a bus, get chemo and do the reverse to get home.#34 that will be. Yesterday marked another milestone for me too. It was one year ago that the company I had been temping for almost 3 years at, put me on staff so I would have better benefits and I could be treated at SK in the city at practically no out of pocket cost vs 'plan B' which was to get a second mortgage on my Mom's house which would not have paid for everything anyway. I will never forget all those who came to bat for me and hired me. They are top level VP's who became and still are my friends. They saved my life, I don't know if they realize that.
Today my family and my sister in law's family all went for a bicycle ride on the Heritage Trail. It's a 15(?) mile paved bike trail. It was great. We only did maybe 4 miles because we had the Grif and Lilster with us. It has been a very long time since I took a ride, it felt great. I did find out that I have a herniated abdominal wall (I thought I was just FAT) so I felt it. I have a support belt (alright, a girdle) that I wear if I do anything strenuous. All in all it was fun. I hope to ride again soon. I've riden my bike up Mt Mansfield and Mt Washington, the tallest peaks in Vermont and New Hampshire. The bike is over 20 years old and is one of the first Mountain Bikes that you could buy. It's great!

What did you have for breakfast today?

So this is my daily breakfast. None of these are vitamins, none of these are chemo. These are just what I have to take to control the side effects of the chemo and/or to keep some sort of sanity and functionality in my day-to-day life. When I think of how my memory has gone to hell, so to speak, I'm amazed that I can function in my job. Some may dispute that (and I know who you are) but for the most part, I do a rather technical job and there are many things to remember. I can't tell you what I watched last night on TV (ok, probably tennis) but my short term memory is shit. I also have a tough time dealing with much of the psychological side effects of the cancer and also, to my surprise, the steroids really fuck with your mind. I find that I am on an incredible rollercoaster of emotions where one minute I feel fine, then I'm on the verge of tears, then I'm in a rage where I flip out. I've already dented my regrigerator and broke my hand when I hauled off and punched it. My hand is fine now and the refrigerator is behaving. I never quite know what to expect except to expect the unexpected ( I sound like Rumsfeld with the known knowns and the known unknowns, and the unknown unknowns).

I Miscounted, it's been 33 chemo's

Friday - Feel like shit

It's almost the end of a long week. Blogging is getting boring, cancer is getting boring. I still have a lot of abdominal pain, hopefully today will be the worst of it and things will turn around. It feels like I've been kicked in the stomach (again). But hey, you've all got your own problems don't you...

I Think I'm Done for a While

It's not working anymore...

Clearing The Aire - Internet Paranoia

I've gotten emails from people concered about what I've mentioned to my therapists. Let me make one thing perfectly clear (I am not a crook-wrong speech). I've mentioned on this blog that I am in therapy. Aside from dealing with the cancer and chemo, I also have 'other issues' not related to this. I tend to let a lot, if not all of it hang out in this Blog. I see a psychologist to deal with my cancer issues, plus other issues that I should have dealt with years ago in the 'real world'. Rarely has any of my Blogging come up in my therapy other than to say that I find it theraputic and I've met some very supportive people that I like. I also see a psychiatrist to handle some medication that I take to help with out with the uncertainty of my mortality at this point in time. I would not aire my dirty laundry in the Blog if it did pertain to anyone.
Pretty simple.
Have a nice day ;-)

Here we go again...Round #31

I can't believe I'm been doing this on a weekly basis or bi-weekly basis for over 19 months. I got into the city to SK at 7:30 am. I left the house at 5:40 am. I pretty much cruise in and avoid traffic and now my car has a radio and AC. I got my blood checked, I still have some and my red and white and platelettes are great. No problem, right? Well last week when I saw my Oncologist, they did a full blood work. The measure my CEA, which tells me if there is cancer present in my blood and is not the final word in tests, but my numbers were in the 170's and then they got down to like 3-5 so that is good, and my LFT or Liver Functions. The blood that is taken for that test takes 2 days or so to get the results. I haven't been following it as of late. I figure no news is good news. For some reason, I called last week to find out what my numbers are. They told me they couldn't give me that info over the phone. I firgured what's the big deal? Then I thought I'd find out today when I am physically there. Well, the Oncologist has to tell me, she is in the main hospital on Tuesdays. They can't give me this info. WTF????? It's not like it's the receipe for fucking Coca-Cola or anything. I mean, I can find out how to build a nuclear device if I wanted but they can't tell me my CEA. I wouldn't care if the posted it in Times Square. It really pisses me off but my Onc is a real hard ass who has no sense of humor, she's probably the best in the US if not the world so I guess I have to choose my words carefully if I say anything at all. I went for a double dose of psychotherapy today which was good. I had some things to sort out and they were very helpful, insightful and I am making progress and learning from mistakes so that's what it's all about. Now comes the fun part, mild psychosis from the steriods and the chemo, with a side order of stomach cramps for 4-5 days with extra rash on the side (and the face). Repeat next week.....For any 'newbies', I've updated the My Story part on the side of this blog which is sort of a chronological diary of my diagnosis, blah, blah, blah

Sometimes a Joke is Just A Joke...

A man goes into his shrinks office and tells his shrink he has 'imaginary friends'. His shrink says 'don't worry, lot's of people have imaginary friends'. The man says 'The problem is that they are real people, I just imagine they are my friends' ;-)

Back at S.K. for #31. Shit, I can't believe that I've that many chemo's so far and still have my hair. That's a lot of junk to be putting into my system. Now I have 8 more to go before getting reevaluated. Hopefully I will continue with my progress. I do a double header with the shrinks today. Psychologist, then Psychiatrist. Up the medication, full steam ahead. I'm actually using much less of the meds. I think all of this is helpful. I'm still working on things but it's not an easy process to change your behavior especially if it's destructive. Gilda's may be out for a while, scheduling problems with my wife's schedule of teaching violin. We'll work something out...

Happy Weekend

This has been a good weekend, the first in a while. Last Monday I got some good news that my tumors in my lungs are shrinking. At least the last 2 months have not been for nothing. Friday, Dana and I got out to see a movie, The 40 Year Old Virgin. Hey, it wasn't Gone With the Wind but it was funny and what we expected. Then, last night we went out to dinner at a pretty good Mexican restaurant. My sister watched the kids and offered to drive them home. I dropped them off at 5 pm and they were coming home around 10:30. Our older son asked what we were going to be doing. I said that we were going out to dinner to which he replied 'dinner for 5 1/2 hours?'. Then I said we might go see a movie to which our younger son said 'but you just went to the movies last night'. I wanted to just say to them 'Look, Mommy and I are going to have a playdate. OK?
We did, and it was great!

Christ, Chemo #31 starts Tuesday....

The end is near...

Of summer that is. It sure went quickly. I probably only have a week or two to swim before the water gets too cold (under 70 degrees). I hope I get my self out kayaking more. I did get tot the US Open this past Thursday, that was great. I wrote about it on my other Blog. I did get good news about my lung tumors this week, they are shrinking. I'm not looking forward to more chemo, but at least it is working. I feel rather normal (as in old normal) today. I hope it lasts. We are heading out for a nice dinner for two tonight, then heading home sans kids. my sister is watching them and will return them later in the evening. The weather is gorgeous so I hope to do some yardwork and watch some of the Open. Not much else to report, I like it that way...

My Life Feels Like a Lie

I just found out the other day that the chemo is working. I'm guardedly happy. I just feel today that I live a lie. Not a happy feeling. I'd probably feel this even if I didn't have cancer.

Significant Shrinkage

I went to NYC today to meet with my Oncologist and to go over the results from Saturday's CT scan. My wife went in with me and we met my brother and his wife there. After getting the blood work done, we were surprised to get in to see the Doc in a relatively short amount of time. She basically came in and said 'there is significant shrinkage in my lung tumors' and that 'we are going to continue with the treatments'. I was expecting the word shrinkage, but I was happy to hear significant in front of it. I did get a printout of the report, but it is like reading a legal document so I will just go by the short and sweet version she supplied. They are also going to try something that could help with the cramping I get in my stomach with the CPT11. So right now, I am scheduled for 4 more treaments, then I meet with a nurse, then probably 4 more then another CT scan. Bottom line, I am very happy that the chemo is doing what it should be and that I am having a very favorable response to it. I'm not looking forward to more chemo because it sucks and I really fucking hate it, but at least it is helping.
Thanks everyone for your support.
Love to all
-phil

Countdown to Tomorrow

It's 9:40 pm, sunday night. I had my latest CT scan yesterday which went, well, like a CT scan. I've had probably over a dozen (maybe even a bakers dozen) over the past 19 months. I will say they've made great strides in the barium drink you have to have for the prep. If I could only throw a shot of rum in it... I will be trying to get to sleep soon. My sister was going to drive over from her house which is a half hour away to be here at 5:30 am so Dana and I could go into the city together. But Dana's sister (who lives a half mile away) will be able to watch the boys. Believe me, it's big deal, but that's another blog entry. Dana normally does not go with me for the chemos at my request. I mean, they are boring, I'm boring when I go, I don't feel like talking so I'm not the life of the party so to speak. Whenever there is a consultation with my Oncologist, Dana, my brother and his wife usually join me. I have an entourage so to speak. I like the support on these days. My appointment is for 8 am. They will take blood first, then I will have to see a nurse, a nurse practicioner(sp) and then the Big Cheese herself. I'm not quite sure what I will hear tomorrow but my guess is that it will be along the lines of that my therapy, the chemo, is working and that the spots are shrinking and that we will 'stay the course' for another 2 months. I could also hear that it is not working and they may present my case to the surgical team for review. The past 19 months have been so sureal, never in my life did I think I would get cancer. It's not in the family at all. I figured I'd have a stroke or heart attack and die like my Grand Parents, Dad and Aunts and Uncles did. I always had to be different, didn't I...
I'll post my results tomorrow, sorry to keep you all hanging.

Brothers

I Need a Break

I just want my stomach to stop hurting, that's all...

How I feel tonight

I just had chemo yesterday and the side effects are really kicking in tonight. I had the double dose, Erbitux and CPT11. The CPT11 reacts with my bowels and stomach where I feel like a woman must feel with contractions when giving birth. It ties my stomach in knots. I will feel like this all day tomorrow. I'm going to work from home, I'm lucky they let me do that. I also can't sleep even after putting in a 11 1/2 hour day (w/o lunch) with no blogging!

Back to NYC

After last weeks photo post, I don't think I can top that. I did have no trouble getting into the city today, and I drove in with the 1996 Camary that we just got. It has AC that works and a radio that works and a mear 120,000 miles on it compared to my Volvo that has 278, 000. I left the housr at 5:30 am and got to SK by 7 am. On the elevator, I saw the surgeon that de-livered me back in September 2004. He remembered me, that made me feel good. He is a good guy, one of the best in his field. He was sorry to see that I was back in treatment. He asked me if I've seen the colon surgeon I had, Dr. Weiser. I thought he asked me if I was wiser. On the menu here today is my weekly Erbitux (1 hour), my every other week dose of CPT11(1 hour) which will cause major stomach issues for about 4-5 days, and the special of the day-a refill on my heptic pump.

I am no longer getting chemo in this pump, but it must stay inside of me for a minimum of two years. It does have to be reilled with an inert solution so it does not dry out in case I need it again. The greatest chance of recurrance is in the first two years. Once the pump is taken out, it can not be put back in.
So when I am finished in NYC, by noon I hope, I have to go to the DMV to register my car. Somehow, I think that the chemo will be the best part of my day...

Ups and Downs, Highs and Lows

I am often amazed at how manic my posts are and how they must look to everyone. One day, I'm riding high and all is good, it's good to be Phil. Then other days I look like I'm ready to go postal or something. I used to be on a more even keel before the cancer (I was just postal ;-) It's probably rather normal to feel like this, as a matter of fact, I know it is because of other cancer folk I've spoken to at Gilda's. Plus most people have good days and bad days. I just think it gets exaggerated due to the medication and the severity of my situation. I feel pretty good today, this week I go for chemo on Tuesday instead of Wednesday (too many cancer people in on Wednesday so they moved my appointment). I don't know if it's good or bad, it's the treatment that will screw up my digestive system for about 4-5 days, I really loathe these treatments in particular. Just a general health update here. My rash is getting a little better on my chest and back, but my face still hurts (I know, it's killing you) from the rash. The skin on my fingers seems to have stopped spliting for now. The skin on my feet is now spliting. My feet and toes are still numb, they feel furry. My sides still hurt and my stomach muscles seem to be sorer. I haven't kayaked in about 3 weeks. I like to think it's because of the heat, but I think I'm just tired. I still swim pretty much everyday. Other than that, I feel great!
I hug my wife and kids everyday....

A Credit My Ass

I went to my brother-in-law's today for my nephew's birthday party. His family was there (2 sisters, Mom and Dad) and a few other people. His family is pretty nice, they are aware of my cancer since I see them at most every family function and holiday. I was talking with one of them when they brought up how I am such an inspiration to her. I used to like to hear that I was an inspiration for people, but lately, I'm getting tired of it. Sure, when most people see me, they see a guy who is trying to fight cancer and lead a normal life. They don't see me when I'm a fucking mental case and can't think straight, I get paranoid, I get clingy. No, they see Phil, fighter, inspiration, survivor. I almost expect them to tell me 'I'm a Credit to my Race' or some shit. I can't tell you how many Lance Armstrong stories I hear. Yeah, I like how he beat cancer, I'm beating cancer, I wear a bracelet, I gave out over 100 of them (about 8 people wear them) they love him, they hate him, he's screwing Sheryl Crow - whatever... I don't think many people understand that I have no fucking choice other than to fight. I didn't choose to have this. If I don't fight I die. I don't know how inspirational that really is. If you're backed into a corner and have no options, what do you do. I could kill myself to get it over with, but I won't. I could stay home and cry all day and ask 'why me, why me'. Why the fuck not me? I used to think in the beginning that I got cancer because I could handle it, I was supposed to set an example of strength for others. I don't think that anymore. I got it because I got it, period. I put up with all of the chemo and tests and all of that shit because I have no other option, period. I put on a face because I'm afraid to show everyone how scared I really am.....

I Really Love This

I want to share it with everyone

Thank You One and All

I would like to thank Mr. Schprock for providing the link to my site to let some new people get a view into 'my life', and to my many regular friends for their continued visits and to everyone's words of encouragement. Not to get on a soapbox, but PLEASE everyone, do not neglect your health and do get regular checkups. Often with cancer, by the time you feel sick, you're almost dead so early detection is the key.
I do have a Happier Blog too.
Now back to our regularly scheduled program...

My Visit to NYC and Sloan Kettering

Today I wanted to try to do a photographic journal of my trip into NYC. I started the day by waking up at 4:30, but I didn't drag my ass out of bed until almost 5 am.









I could not believe the price of gas by us. It's actually about .25 more expensive in NY State, so I try to fill up in NJ.
Can you imagine, $2.53.9 for 1 gallon of gas.
I almost spit out my $4.00 12 oz. cup of Starbucks coffee!












I really felt like having some melons for breakfast, but as luck would have it, my favorite breakfast nook was not open yet. Darn!












So off I went into New York City. Crossing the George Washington Bridge is not too bad if you can make it there by about 6:30 or so.









Just my luck, a car had overturned on the Westside Highway (Henry Hudson Highway) so I had to take the back streets. Broadway down to Westend, and then to 66th street where I park.
Moments later, the Number 57 bus came by. This is great because it picks me up right in front of where I park, then it takes me over to the eastside to 57th st. The facility I got to is on 53rd street.












After I got off at 57th and Lexington, I walked down to 53rd. On 54th street, there is this cool church of some kind. I don't know what denomination it is, but it is a really cool looking place. It looks Greek to me!












Right down the middle of the avenue is the Chrysler Building, one of the coolest in the city. I've never been in it, I hope to someday.












After I checked in the SK, I usually go hit the bathroom, but I thought I didn't have to document that! then I go and stake my claim to one of the two computers they have there. I usually check email and update my Blog. Wow, what a cool looking blog that is on the screen. What a talented designer that person is!












Then after a few minutes, you get a call to have your 'vitals' checked. Weight, blood pressure, and a CBC (Complete Blood Count) taken. This is Barbara, one of the nurses that works in this part of the office. She's real nice. She was very happy I was going to take her picture.









After a relatively short amount of time, maybe one hour, I was called to go in and get my treatment. Today it is only the Erbitux. I found out that this drug is similar to Avastin, which cuts down the growth of new blood vessels so it starves tumors. But there is also an added special feature. It has more mouse antibodies in it! That may explain my cravings for cheese and Tom and Jerry cartoons lately. The nurse I had for the chemo today was Stacy. I've had her before, she's real nice. They really are all very nice. It takes a special type of person to be a nurse I believe, especially a cancer nurse.









She had no problem with me taking the picture, but she did explain that is really not allowed. She then got my meds ready and stuck me in my port (located in my upper chest) with the needle and got the Erbitux ready. She hooked me up and then I asked her to take my picture.









I get the Erbitux and also some sodium chloride (?). When I only get the one infusion, it just takes about an hour. When I get both (next week) it takes about 2+ hours. They really have some great plants in these little areas. They also have a TV, but I never watch it, I usually just take a nap.












Inside of the lobby area, there is a very cool Chinese looking backdrop with a waterfall and silouettes of trees. I went to take a picture and the security guy came running over and started asking me if I was a patient there and that I'm not allowed to take pictures. I didn't argue and just beat feet so he would not erase all of my shots. Here is a picture of the front of the facility. The awning is heated in the wintertime.









So when I got out, I stopped at this great little cafe and got an egg, cheese and ham on an english muffin and sat outside and ate.









I then started my journey back to my car. Usually, I would take the #57 bus back to the garage, but since today was gorgeous in the city, plus I wanted to take some pictures, I decided to walk. Here's a shot of the CitiCorp building. This happens to be a target for the terrorists, so it is usually well guarded.












Being somewhat of a botonist, I couldn't help but notice this
rare tree. Oh yes, there was also a 30 ft tall statue of a naked woman.












This fountain is in front of the Plaza Hotel at the bottom of Central Park. It's a real nice place to hang out. They are currently renovating the Plaza and making some rooms into condos. My brother told me a story a few months ago that when he was about 18 or so, him and some friends came in to the city to see the St. Patrick's Day Parade. Being extreemly drunk, they somehow made their way into the Plaza and found they had to 'take a leak'. So they found a balcony and pee'd off of it on to everyone's parade. Just thought I'd share...












So I walked through Central Park. Here is a cool tunnel I went through which surprisingly, did not smell like pee.












Here is the Bethesda Fountain. Many times there will be musicians or dancers there. You can also rent a rowboat there (no kayaks though)








This cat was real good on the sax. He was playing 'Love for Sale'. I didn't look to see if his girlfriend was around... He got a dollar from me.












These guys were ok too (and got another dollar) I wish I had the nerve to play in the park (hell, I wish I had the nerve to dress like them!) I should do it one day as a goof and see if I can make a buck or two.












What can I say? Strawberry Fields Forever...








Back home until next week....












I must say, taking these pictures really made the day seem like fun. I have to try something else some other time. Hope you enjoyed it.

Number 6 of 8 tomorrow

I go into NYC tomorrow for treatment #6 of my 8 scheduled treatments. I'll get rescanned in about 2 weeks and then see how we proceed. I have always been sort of a control freak, so this cancer has been quite an awakening for me. I have absolutely no control over it except with how I deal with it, that's been fairly good under the circumstances I think. One never knows how one will react to a given situation until you find yourself in that situation. What I had mentioned last week as an idea for this weeks journey, it to document my day with photographs, so I think I will put new batteries in the old digital camera, and see what happens. The trips to the city are not all bad. Thursday's post should be interesting and entertaining.
-phil

Whoa

Back at work today, my stomach is feeling better but I am so jumpy and anxious, I can't believe it. I feel pressure to get work out which I normally have no problem with but lately I have a hard time focusing on things (work). I have to stay focused. This seems to happen outside of work too so I know it's not just a work thing...

Lemonade

My wife, my youngest son and myself were going to the organic farm we visit on the weekends today. We're not veg-heads, but we like to support the local farmers and they do have the best corn. On our way there, we passed a couple of kids who were selling lemonade. I didn't think too much of it. Then I remembered something I read one day. 'You should always stop and buy lemonade from kids ' or something like that. So 1/2 mile later, I asked everyone if they were thristy. I heard a resounding 'yes!' so I turned around and we went back and bought 3 glasses of lemonade @ .50 a glass (plus a .50 tip). It made all of our days....

My Options

When I was in SK last Wednesday, I was talking to my nurse about my treatment options. The doctor really doesn't give you a whole lot of information, mainly because they really don't know how you will react to the treatments. Cancer is a strange beast because one person could be on a certain drug protocol and it works great for them, you can be on the same one, and it doesn't work for you. Also, the protocol can kick ass for a while, then it will stop being effective. That is part of the reason, I believe, that cancer is hard to cure. If it were only a matter of taking chemo to kill the cancer cells, we could all be cured. But it ain't. So, my options seem to be these:

• Continue on the chemo until it is no longer effective
  (who knows how long that will be. I get reevaluated in 3 weeks or so)
• Have an operation when the chemo is no longer working

I feel at times like I am stuck between a rock and a hard place. I hate the chemo. I hate operations. The last two I had left me in the hospital for 16 days the first time and 12 days the second time. I lost over 40 pounds, I had a tube up my nose and into my stomach to drain my fluids because my digestive system didn't seem to want to start up again. That tube was put in a total of 4 times with the last operation in Dec 04, 3 of those times were when I was awake. Imagine trying to stick a drinking straw through a not quite ripe cantaloupe and make a 90 degree turn halfway there. I can't think of anything worse. And somehow, this last chemo has really gotten me thinking about my experiences with the hospital stays. I don't know why, but it has. I just have to take it one day at a time and one step at a time.

I feel horrible

I just want to be normal again..

I've Climbed Off the Ledge...

...I'm back in the building. Thank to the support from some truely great friends. The day is early though...

Back Home

It's almost 2 pm and I am home. I can immediately feel the chemo in my body. It makes my mouth water so much, I have to keep swallowing. My stomach is churring, my eyes keep twitching, I am sweating like crazy and am very jittery.

-Today I didn't do anything nice for anyone
and do you wanna know what?
I don't give a fuck!

New York New York, a Wonderful Town...

Okay, it's NYC day! I got up REAL early today (4:15 am) and was able to be at SK by 7 am. Hopefully it will be an early in, early out deal. By early out, I hope to be home by 2-3 pm. All I have to do is get pumped up with chemicals (chemotherapy - chemical therapy). Actually, one of the drugs is not considered chemo (Erbitux) but is actually a drug that targets a certain aspect of the cancer. If I didn't have chemo brain, I might remember what that actually means, but the point is that it does not just go in there and kill everything like most chemo does. It attacks something that is unique to the cancer. One drug I 'did' was Avastin and the thing that it did was to stop or slow down the growth of new capilaries. Tumors need blood (food) to survive. The theory is that if you can starve the tumor, it will shrink. It did do that for the spots in my liver. So there you go, Chemo 101.

The past few days have been a major period of extreme mind-fu*k for me. I can't believe all of the stuff that my brain conjures up. Most of it not especially good either. Those who 'know' me get the inside scoop on my highs and lows. You others could probably tell by reading all of my posts (something to do if your TOO happy). My mind always was great at playing tricks on my anyway, but the combo of medication I take on a daily basis just to get through a normal day, on top of all of the chemo I've taken over 18 months (today is treatment #29) has made me quite the basket case at times. I do a fairly good job of pretending I'm normal, I am able to function at work, function at home and socialize with people (although this rash I have has made me real self-conscious, I'll not go to meetings or just hide in my cubicle most of the day). I see how emotionally fragile I have become. I used to be someone who hid all of my emotions inside, now I tend to wear my heart on my sleeve and it has gotten me in trouble a few times. I should save all of my 'stuff' for my shrink's couch. I would have thought that I would have learned my lesson after last year's experience, which STILL haunts me. I wonder sometimes if having this 'bummer blog' as I like to refer to it as, is a good idea or not. I think I will keep it because I have an outlet for myself. Thinking back, I can't believe I've been dealing with this since Feb 25th, 2004. It seems like an eternity, I almost can't remember life before cancer..

I plan on updating my story while I wait to get treatment. By the way, my vitals are fine, as usual. BP 128/77 HR 80 good blood counts too.

Peter Jennings

It's pretty amazing how quickly Peter Jennings went from telling everyone that he had lung cancer, to when he died. I think it was about 4-5 months. I wonder how early he knew? He was a smoker*, then quit for something like 20 years, then started again after 9/11. Tom Brokaw said last night that he has known 8 people who died from lung cancer, so when he first heard of Jennings diagnosis, he thought 'well, that's all folks' and he was right. Cancer is such a strange beast. There are so many types that can behave differently in each person. I have cancer in my lungs now that metastisized from my colon (my primary cancer) and into my liver. Looking at the stats for survival rates for stage IV colon cancer it's not real promising. 5 year survival is 'rare' at best. That is the main reason I try to stay off the internet. I don't want to see all of this data about it. The numbers they use are very generalized and also tend to be outdated. I'm getting the latest treatments as part of a clinical trial (Phase II) so I feel that those stats don't apply to me. Tomorrow I go for chemo #5 of 8 - more than halfway there. To what, I don't know....

*And Curse Sir Walter Raleigh, He Was Such a Stupid Git

I've Been RAK'd

I wasn't quite sure what to post today, it's been a strange couple of very emotional days. Something happened today that was very postive so I thought it best to post this. I do know that I have some very understanding friends that are helping me through a lot of my stuff at this time, and I thank them.

First, I have to give a little background. We bought a house in NY State a little over 2 years ago. It needed (and still needs) some work. We have an above ground pool that is over 30 years old. There was no filter or pump or fixens, the water was so gross in it too. I have a friend from my HS days (that I was arrested with as a teenager for smoking pot) who's been living in this area for a number of years, and his father owned a pool business and he (Rick) has run it for many years. When I needed supplies, I stopped by to see him. I hadn't seen him in a while so it was great to catch up on old times, etc. He set me up with a pool filter that could filter a pool 5 times the size of ours, plus the pump and everything else. He was giving it to me for cost which I didn't expect and was real nice of him. He also let me borrow this pump to empty my pool, and set me up with a water delivery on a sunday so we would be ready for summer. I didn't pay him at the time, we were sinking money into the house like crazy and he said it could wait. We got a lot of use out of the pool the first year. However, over the winter, the liner blew out and we lost all of the water, plus the wooden sides were bulging and need to be fixed. Well, last Feb, I was diagnosed with cancer. I had stopped by to get some info on how best to fix the pool and we started talking. I told him about what was going on with me and he shared an experience with me that I vaguely remember hearing about. It seems that a few years ago, while skiing out west with his wife and brother and his wife, Rick slammed into a tree. He was knocked out and had an 'out of body' experience. He told me how he remembered being up in the air, looking down at himself with everyone looking over him. He said, fuck this, I'm not ready to go, and suddenly was concious and being a ski patrol guy, knew the condition he was in and told everyone what to do to help him. He was airlifted off the mountain and was flown to a trauma unit in Idaho. He was in the hospital for months, had brain surgery and leg surgery. He was very lucky to be alive. I was amazed at hearing this and we have felt a comradery ever since. He's always been a very positive person who has helped me snap out of the funks I sometimes find myself in. Anyway...last summer when my pool was not usable, he offered advice on how to best fix it. My brother and I ripped all of the old siding out, bought plywood to fix it, tried out hardest and basically didn't know what the hell we were doing. We didn't get it finished by summer's end. The chemo made it hard, plus my brother lives in the city. So, the end of September rolls around and I am in Sloan Kettering, getting 60% of my liver removed, a piece or my colon, my gallbladder out and a pump installed under my skin. It sucked big time, but that's another post. While I was in the hospital, Rick sent some of his workers over and undid what my brother and I had done, did it the right way, put a new liner in and had the pool filled. He asked my wife not to say anything to me. When I got home, after 16 days at Sloan, I had a 'new' pool. I could not believe it. I cried. Fast forward to today...Thursday of last week, I got an invoice from his company for the filter and stuff we got over 2 years ago. I had felt uncomfortable with not having paid him and then, what he did for me last fall was too nice. I went there today to clear my bill ($1175.00) He was surprised to see me, I would pop in and we'd BS and he'd ask how I was, etc. So I brought up that I wanted to clear my account and he was surprised that I had gotten an invoice. So he went over the numbers and knocked it down to $450.00. Then he said he couldn't take money from me. I did not go down there expecting this at all. I had gotten him a website last year, but he's been too busy to supply me with any info for it so it's just sort of a splash page with a photo and phone number on it. I offered my services to him last year and again now. I am now his web slave.
Rick's an amazing guy, always was, always will be......

Gilda's Club - The End?

What happened
My Letter
Ann's Response

Here is what I sent Ann - Is it over?

Hi Ann,
I can see having the policy to maintain and protect the confidentiality of the group’s members. That was not explained at the time. I know Gilda's is not a good fit for Dana, or the kids at this time. I'm glad that our experience has started some dialogue within Gilda's to address these issues. As far as I'm concerned, it's over and done with. I will not discuss it further, I'm satisfied with the steps that are being taken. No hard feelings.
Regards
Phil.

The Good News....

First the doctor told me the good news: I was going to have a disease named after me.
Steve Martin

Feeling better today, could it be because I ran away to work!

Today...

I just want to run away from home......

INSURANCE - The ' I ' word

Ok, so I'm home, no tickets, no bombings, it's HOT, a lot of tank tops in the city, all-in-all not a bad day. I get home and my wife tells me that some collection agency (P.C.B.- doesn't that cause cancer?) called to tell her/us that we owe $1570.95 for services on Sept 20 - 30, 2004. Well, I looked at all of my claims online, I can do that with my insurance carrier, and saw that the patient responsiblity (I think that means me) is ZERO. Ok, I have these questions:

• when was the exact date and which facility was it?
• what was done?
• why does my insurance say it's been paid?
• where the fuck is my invoice?
• why is there a collection agency after me. Shouldn't I get a bill, ignore it, then have them after me?

The woman was nice, she suggested me calling the insurance company. I asked her to mail me all of the invoices and information, and I'll take it from there....

Back at Sloan Kettering

Well, here I am at SK waiting for my chemo to be mixed. My blood count is good (I've NEVER missed a treatment because of low counts-I'm healthy!), so now they have to mix it up. Who wants day-old chemo, not me! I want fresh-squeezed, vine ripe stuff. The good thing, other than the fact it is air conditioned here, is that they have computers so I can Blog, email friends and generally, screw around. I was sitting on one of the many couches they have here (this place gets CROWDED), and some 'lady' is on her cell phone having an arguement with Scott. She was so loud, it was amazing and annoying. She hung up on him at one point, then called him back to get the last word in. I really don't like to argue on the phone with my wife or someone I know. I'll scream at insurance people and tell them to 'stop dicking me around', but I draw the line with personal issues. It bugs me, but today is supposed to be a RAK* day so I will control myself and try to do something nice later.

Gee, just remembered. My Dad died 16 years ago today. I miss him a lot!

Feeling Deflated

I'm feeling a little deflated today. I go for chemo again tomorrow. It's my 4th of 8 scheduled treatments, the half way point I suppose. I have a feeling I will do more than 8. Don't ask, I just know. It's been over 18 months of this 'chapter' in my life. I go from being real gun-ho, to being so sick and tired of the whole deal. Life wasn't real easy before this either, but now it's one thing after another it seems. Well, hopefully I'll be able to zip in and out of the city tomorrow and I won't get a ticket or anything and be home by 2 pm. I Probably should not have posted today, but what the fuck .... just feeling let down.

Back to Work

Let's see how today goes, my stomach has calmed down. I feel rather freakish though. I wonder if anyone will comment on my skin. I didn't tell too many people about the new cancer this time. I'm curious to see who comments, or if they will pretend there is nothing unusual.
I had my 15 minutes of fame in here already :-)

Saw Mom Today

(Mom, 13 yrs old)
I saw my Mom today, she is doing ok. She had 125 stitches in her forehead! She also broke her left wrist. It is so amazing that she did not get hurt worse, the doctors were amazed. At 86 years of age she is still as sharp as ever (I'll leave that comment as is). I' still feeling a little 'crappy', but I did manage to get out on the lake to kayak. It was great, plus I've been swimming a lot today. Looking forward to a peaceful evening, going into work tomorrow even though my car is still in the shop. I'll get a ride from a friend who lives close by....

Feeling Blah

I don't quite know what to write, so it is probably best to keep it short. I've done 3 chemo's, best case scenario is 5 more. They are not fun at all. If I respond well to the treatments, I may do more. I've been approved for 16 treatments. I hate every one of them. It's controlled poisoning that could save my life. How strange is that? One other thing I had forgotten about, is how the chemo can change how food tastes. Everything is becoming very bland to me. I hate that too!
As far as my treatments go, a friend once told me:

"Sometimes you have to go through things,
not around them"

Good news, my Mom seems to be doing okay. It's amazing she didn't break her neck or something, only her wrist. I will get down there tomorrow to see her.

Another Fun Day

Well, it's been another exciting day. Feeling generally pretty crappy. Didn't kayak, been over a week probably, I don't keep track anymore. I did manage to throw myself into the pool for a bit. My face, which was getting better, is now going back to a toad face. I was able to get my car started, I brought it down to throw more money at it. I'm getting a different car in about 2 weeks, but I need something now. While sitting in traffic to pick up my son from swimming, I get a call from my sister telling me that our Mom had fallen down the stairs and broke her wrist and cut her head. She just turned 86 on the 17 of July. I have a real bad feeling about the rest of this year.....

In a Fucking Steroid Rage

Well, the wonderful side effects of the chemo, mixed with the steroids are coming to a magnificent FUCK-ME-fest. Most of the day was good, I was able to work from home. But this afternoon, when I went to pick up my son from swimming lessons, my fucking car would not start (again), I put $700 in this so far in the past 2 weeks and they really don't quite know what the problem is. It's not getting fuel, so they change the external fuel pump, but of course, Volvo has one inside too and that may be bad. So anyway, the car wouldn't start and I am down by his school where his lessons are. I call AAA, they said someone will call in ten minutes to tell me when they would be there for the tow. I tried one last time and it started. I get home ok. Then I go to take my son to Karate, and once again, it won't start. We are getting another car in two weeks, and I REALLY don't want to sink any more money in to this. Then on top of things, my wife calls on the cell phone, we don't feel like cooking (I don't feel like cooking) so we're going to order out. All I get is ever other fucking sylable. I hate cell phones!!! So we get that straighted out. My youngest son is on my case about wanting to eat RIGHT NOW, so that sucks too. Plus, I'm now feeling the side effects on my digestive system (can't shit) so that is the icing on my fucking cake. Can't wait to have another night of insomnia. At least it's not 97 degrees anymore. I feel like crying and punching holes in the walls and screaming. I really fucking hate cancer!!!!

The Day After Chemo

Taken from someone's website

I won't lie to you, or sugar coat the experience, so I must tell you that the side effects of the steroids were horrendous. The flushing and reddness in my face and neck felt like I was on fire, especially with the first few drips. I joked and told my doctor it was like jet fuel. lol The mood swings were rather trying as well...laughing one minute, crying the next, and yes even anger reared it's head a couple of times....then you feel bad for being angry and cry about it. It's a rollercoaster for sure! My face and chest broke out with acne, which I'm much too old to have. My bowels "locked up", which was miserable... My face puffed up for weeks, like I was gonna explode. I couldn't sleep, and felt jumpy all the time. I ate everything that didn't move...even the cat wasn't safe. lol

My own personal experience is quite similar. Especially the emotional part. It got me into big trouble with a woman I work with because I dumped so much of what I was feeling on her. She won't look at me let alone speak to me. I'm trying to be better this time around and keep a low profile and only talk about things with the 'great friends' I have.
That about sums it up!

Random Acts of Kindness *

* I now realize that I had a post with the same heading. One bad thing about chemo is 'chemo brain'. I can remember someone's name that I met 30 years ago, but I couldn't tell you what I had for breakfast and one night I forgot how to spell one of kids name
-at least I think he was my kid. He's still hanging around the house.

I seem to be on a new trend. I have been trying to practice RAK (Random Acts of Kindness) on a weekly basis if not more. They seem to be tied in with my chemo days too. Today, I paid for a woman's bus fare. I asked if she would mind if I paid for her (she may have thought I said do you want to get laid ~ha-ha) and she looked surprised and said 'sure' (maybe she meant the other thing?). I said that I try to something nice for someone that I don't know. A Random Acts of Kindness if you will. I didn't even engage her in conversation (which means I didn't make her talk to me). She tapped me on my shoulder when she was leaving the bus and she told me that I really made her day. That made mine too. The cost? 15 seconds of my time, the desire and courage to ask her (being that I look like I'd been beaten with cactus) and $2. Another time I was in the city, I tried to buy a cop breakfast, but they declined. Last week, I saw some hikers that were hiking the Appalacian trail and I stopped and got them some bottles of cold water. I've also bought cookies for a co-worker because she seemed to be having a rough day. I think her daughters had her up early and there is some guy at work that is always bothering her. Another time on my way to Gilda's, I bought a homeless man a sandwich and a water. I also always will give up my seat on a bus or subway to a woman. It amazes me how many times I see these young healthy looking young men (in their 20's) who do not offer their seat to a woman. It really annoys me. I want to grab them by their shirt collars, and punk slap the shit out of them, and then I want to take my knee and drive it right into their.. But I regress. And last week, the same day I gave the hikers some water, I stopped at McDonalds (I know, gross) and noticed that there was one of those little souped up, low ridin, spoilerladen, hot paintjobbin, cars that many of the young folk are driving these days. And you know what? He was parked right in front of McDonalds, taking up two parking spots apparently so no one would touch his precious little stupid car. So, being the mature, caring, RAK kind of guy I've become, when I came out with my cheese burger and fries, I proceeded to drive my car right behind his, open my cheese burger, remove a pickle (with ketchup) and gently fling it onto his back window. I wish I had my camera with me. The landing was perfect, the pale green complimented his purple car....Oh, where was I?
Ah yes, Random Acts of Kindness.
I try to do them all of the time.
I love to see how people react, they don't expect it.

Mean People Suck!
(and so do people who take up 2 parking spaces)

Gilda's Club's Response

I really appreciate your getting back to me, Phil. I did want to hear your perception of the events, as I was not in the office at the time of your visit and was out sick the following three days; by the time your concern reached me, a lot of time had passed and I wanted to make sure you knew you had my “ear” to discuss it. I can assure you that the issue of how to handle a visit like yours is being addressed by me with both staff and independent facilitators, to ensure that other members do not experience the stress that you did if a similar situation arises. With regards to non-members attending groups, the reason we discourage this is to maintain and protect the confidentiality of the group’s members. Unfortunately, Julie was the only staff on that evening, so she had limited resources available to her to address you and your family’s concern; under normal circumstances, another staff would have been available to meet with your wife to discuss her needs and interests and determine if Gilda’s Club is a good fit for her.

Again, I do regret that your experience that evening was not a positive one. I am glad that you have been open to discussing the issue with me; I look forward to meeting with you the next time you are at the Clubhouse*. Be well.

Ann

* I guess she missed the part about me not wanting to discuss this in person

Ready for Round #3

Well, it's almost 8 am and I'm here at Sloan Kettering getting ready to have my blood check and get weighed. The commute in was ok. I parked IN THE GARAGE so I should not get a ticket, even though my wife did get the van inspected. My car is still troublesome with not wanting to start. We are getting a different car in about 3 weeks and I don't want to sink anything else into this one. anyway, I took a swim this morning at 5 am. I have not kayaked in about a week. I need to get my ass out there, but I'm starting to not feel motivated. Here's where I need to motivate myself. It's so early out and already it's 80+ degrees! I jsut got a call from my brother and it looks like he has a connection so we can get USOpen Tennis tickets again. He used to get us great ones. He has a friend, who knows the people who do the USTA website. He forwarded him my 'Lance Candy Bar' joke and he liked it and now we are getting tickets. Isn't life funny?
I went to Gilda's last night. I sent my letter on Monday, then I sent another email asking if they got the first and to give them a heads up on my attending. I also asked to hear from them how they 'saw it go down'. I'm curious if we are on the same planet. I, of course, was the focus of the meeting (gee, 1st candy bars, then Lance Armstrong, now Gilda's - contoversy follows me around I guess, I'm such a trouble maker) last night. I gave a brief run down as to what happened. I didn't want to trash them without first hearing from them. Actually I did want to trash them and part of me going last night was to just piss them off! I'm like George Costanza at times. I kept it to a minimum and let everyone else trash them. things have changed there since a few key people left last year. I don't have too many options so if I can go there and deal with the beaurocracy, I'll be ok.
I want to find out more about this rash I have, It REALLY SUCKS and hurts as much as it is ugly. It makes Keith Richards face look like a babies bottom. I hope to post some more soon, blood work is coming now.

Across the Universe

Words are flowing out like endless rain into a paper cup,
They slither while they pass, they slip away across the universe
Pools of sorrow, waves of joy are drifting through my open mind,
Possessing and caressing me.
Jai guru deva om
Nothing's gonna change my world,
Nothing's gonna change my world.

Images of broken light which dance before me like a million eyes,
They call me on and on across the universe,
Thoughts meander like a restless wind inside a letter box they
Tumble blindly as they make their way Across the universe
Jai guru deva om
Nothing's gonna change my world,
Nothing's gonna change my world.

Sounds of laughter shades of earth are ringing
Through my open views inciting and inviting me
Limitless undying love which shines around me
like a million suns, it calls me on and on
Across the universe
Jai guru deva om
Nothing's gonna change my world,
Nothing's gonna change my world.

--requested by paula

Imagine

Imagine
Imagine there's no heaven,
It's easy if you try,
No hell below us,
Above us only sky,
Imagine all the people
living for today...

Imagine there's no countries,
It isnt hard to do,
Nothing to kill or die for,
No religion too,
Imagine all the people
living life in peace...

Imagine no possesions,
I wonder if you can,
No need for greed or hunger,
A brotherhood of man,
Imagine all the people
Sharing all the world...

You may say Im a dreamer,
but Im not the only one,
I hope some day you'll join us,
And the world will live as one.

How am I?

I sometimes don't know what to write in here. Today's been a good day so far. I woke up! Played guitar! Did some blogging and emailing. I've met some great people by doing this. I don't want this site to become a 'pity party' for me, but this is how I am doing. I generally feel ok. I did spend most of yesterday either crapping, trying to take a crap, trying NOT to take a crap or feeling crappy. My energy is okay, although if I get up much past dawn, I won't kayak because I can't take too much sun anymore because of the chemo. My skin has also broken out where I have more zits on my face and torso that I have ever had in my entire life. My nose has so many of them and they hurt like hell. I try to pop them to drain them, then put either SeaBreeze on them (WOW, that STINGS) and/or a steriod cream which seems to help a little. I feel rather freakish, but I am probably making it out to be worse than it is. Also, my scalp hurts from all of the zits on that too. At least I have my hair. I'm glad I'm not puking all day like some people get, but I have a new normal again... Yet somedays I feel like I can't take it anymore. I've had enough. My kids help a lot with snapping me out of my funk (sometimes - other times I freak and can't handle the stress) About 2 months ago, I was so pissed at everything I punched our refrigerator and broke my hand. Fuckin' schitzo,
I will jump in the pool shortly to cool off, then hit the shower, then we are off to look at buying a car from my brother-in-law's sister.

Random Acts of Kindness

One thing I have noticed since finding out that I have cancer, is that I tend to try to be nicer and to follow my 'gut' more. Last week, as I was driving home from a treatment in the city, I noticed a group of 3-4 hikers on the side of the highway, taking to someone in a car. It was about 90 degrees out that day, and they were loaded down with what looked like real heavy backpacks. That instant, I felt an overwhelming desire to 'do a good deed'. I drove up the road a few miles, saw a gas station, went to the mini-mart they had, and bought 4 BIG bottles of ice cold Poland Spring water, went back tyo my car, and drove back to where I saw the hikers. I was able to find them. I stopped and asked them if they were thirsty. I don't think they quite knew what I was 'up to', so I told them that I had seen them and I thought they might like some water. They were thrilled to get it. I found out they were hiking the Appalacian Trail from Georgia to Maine. I told them how I used to do a lot of hiking etc. And I told the one guy that I try to practice 'random acts of kindness'. He said that was real cool. I reminded him not to litter, only because I like to bust chops, and went on my way back home....

the letter so far

Living with Cancer? come as you are.
Welcome to Gilda's Club Northern New Jersey - a special place just for you. A caring community for people whose lives have been touched by cancer - men, women, and children living with cancer, their families, and friends. Gilda's Club Northern New Jersey is a special gathering place. It's your place. It's whatever you need it to be, whenever you need it. Just open our red door!
-- From the Gilda's Club website

Last Tuesday night (July 19, 2005) I went to Gilda's Club, like I normally do, for my weekly wellness group meeting, but this time my wife and kids were coming along, partially because we have been reduced to a one-car family for the time being, the other reason was that my wife wanted to see what Gilda's club may have to offer her as a 'caregiver' to me, who has cancer. They also say to be kid friendly so we thought the boys could hang out while we were in group support meetings. Well, was I wrong! First off, when I mentioned our circumstances for this particular evening, I expected to hear, ' that's great, you are all welcome here ' but to our surprise, the receptionist said that we would have to meet with Julie, who runs the children's program. So we figure, okay, we'll explain that my wife wants to check it out to see if it's a good fit, and the boys are great socially and would not be a problem at all. Well, Julie tells us 'Well, we have to do a screening first and see what group might be best suited for our needs'. I didn't realize there were so many groups to choose from, I thought you basically:1-have cancer, 2-have a spouse or other family that has cancer, 3-you're a kid with cancer or have a parent that has cancer. Julie offered to let my family 'wait in the reception area while I go in for a support meeting'. That was absurd. I saw my facilitator and told her I was not going and I wrote her an email explaining what had transpired. I understand that there are rules for the organization and I realize I could have phoned ahead to make sure it was okay to bring my family, but I didn't, and still don't , see what the big deal was. Is this the first time ever that a member has shown up with their family unannounced? Is this the reception they got? I felt very rejected as did my family. I felt how we were treated was uncalled for, uncaring, unprofessional, and unbelievable.

After much thought, I will most likely return to my group, I happen to like the facilatator and the group members very much and I get a lot of support from them. I don't see my family returning. I do not wish to, and will not discuss this matter with anyone at Gilda's, if there is any response from anyone, e-mail me.

Day 10 07.22.05

The rash and the discomfort is getting worse, but I have some steriod cream that is helping a bit. I got up early and kayaked today. It was one of those special days where I was able to catch last night's full moon (or Kevin) setting while at the same time, the sun was rising. Very cool, I took a leisurely paddle and took in the sights, not trying to set any records. I went home, then jumped in the pool and did like a 20 minute swim, hit the shower and off to work. Still having stomach issues. my day revolves around taking a decent shit. Ah, the little things we take for granted....

Chemo - Round 3, Day 9 - 07.21.05

I went into NYC to Sloan Kettering yesterday for my second of eight treatments that I will be getting this time. I have had 2 cycles or 12 rounds each since my diagnosis February 04. I did my usual thing, woke up at 5 am, went swimming for about 1/2 hour, showered and left for the city. I'm about 50 miles north of Manhattan so the drive is roughly 1:15 hrs (if you leave early, you can beat the morning rush). I had found a great garage to park at, it's $11 for most of the day, it's close to the Westside Highway for an easy escape and it's close to the crosstown bus I take to get to SK. But, being the guy looking for a bargain, I saw a spot on the street close to everything that would cost me nothing! - or so I thought. I hopped on the #57, went crosstown, got off by CitiCorp building. It's the one that the top of it is at a 90 degree angle and it's also been mentioned as a target by the terrorists so outside of the building are about a dozen guys with the black army helmets, flak jackets, AK-47 machine guns. It's almost to the point where it's no big deal to see them, it's part of life now, plus you get used to seeing crazy people with camouflage on with automatic weapons anyway in NYC. So I got to SK by 8 am, checked in, went online, did my rant about Gilda's then went for bloodwork and a weigh-job. After that I would normally have to wait to see my oncologist which could take another hour or so, plus I usually meet with 2 other nurses/practitioners before I get to see "The Wizard". She is probably the best in the country at what she does. Today, was my lucky day and I just had to wait about 1 1/2 hours for the pharmacy downstairs to get my 'medicine' ready. The place is usually packed, that always blows my mind, because almost everyone on this floor, is there for colon cancer and most of us have these 'hepatic pumps' imbedded under our skin that administers chemo directly to the liver. Liver metastisis and Lung metastisis are common in colon cancer. So I get called in and a new nurse 'Bill' is the person taking care of me. I must add that all of the people who work there are nice (except the a-holes in Patient Financial Services). He gives me some benadryl, in case I have an allergic reaction, then the Erbitux. The benadryl makes me sleepy so I nod off for about an hour and then they disconnect me (I get my drug introveiniously through a 'port' in my upper chest that is under my skin). Bill also gave me some info as to what to expect from the Erbitux which is a nasty rash, which I'm getting and warned me 'if I get open sores, to stay out of the pool' - peachy! My stomach is not too bad today, not like last weeks drugs which I will go into in another post. So, I left SK, hopped the #57 back to the west side, go up to my car, and see that I got a $65 ticket for overdue inspection. Some fuckin bargin hunting I did....

Gilda would have given her a Noogie - 07.20.05

Last night I went to Gilda's Club, like I normally do on Tuesday evenings, but this time my wife and kids were coming along, partially because we have been reduced to a one-car family for the time being, the other reason was that my wife wanted to see what Gilda's club may have to offer her as a 'caregiver' to me, who has cancer. They also claim to be kid friendly so we thought the boys could hang out while we were in group support meetings. Well, was I wrong! First off, they looked at us like we were ready to come in and ransack the place or some shit. Then, the lovely receptionist said that we would have to meet with Julie, who runs the place. So we figure, okay, we'll explain that my wife wants to check it out to see if it's a good fit, and the boys are great socially and would not be a problem at all. Well, that dopey f-ing #$%&* tells us 'Well, we have to do a screening first and see what group might be best suited for our needs'. HELLO, I have FUCKING CANCER, this is NOT a FUCKING news flash to our family. Then, she was real condescending to us and just really rubbed me the wrong way. She offered to let my family 'wait in the reception area while I go in for a support meeting'. They offer as much support as my Grandmother's panty hose! NADA! I told the woman that I'm out of here, I saw my facilitator and told her I was not going and I wrote her an email last night explaining what had transpired. I may not go back. I mean who the fuck needs this shit. I went through a similar thing with CancerCare.org. I had a counselor who I didn't 'gel' with, I asked if I could see another one and they told me I would have to work out my issues with her. I felt like I was in a Seinfeld episode! See my counselor to figure out why I don't want to see my counselor???
She SUCKED, THAT'S WHY. OK?
I guess it could very well be me!
meanwhile, let the controlled poisoning begin.........(again)
;-)