Monday, December 11, 2006

CT Scan

Sort of good news here, my CT scan is the same, no new growth and no shrinkage of the suspect spots. She (my Onc) wants me to have a PET scan on next Monday. That test can tell if there IS a problem, it can't rule out that there isn't one. We are leaning towards stopping treatments for two months and seeing if anything grows.

Wednesday, November 08, 2006

Another post

So after Monday's missing chemo, I went to my therapist on Tuesday. I had moved it to every other Tuesday so it would not be on the chemo weeks since I tend to be real hyper afer my treatment. I also felt funny with getting out of treatment and I wanted to talk with her. It wound up being a session where I talked a lot about how much I hate everything there is about the cancer and chemo. I also talked about how much my back hurts too. I was really getting depressed and she wound up asking me if I was suicidal. The few times I've been asked that question have always thrown me. As bad as I feel, I never get suicidal. I may wish I was dead but I don't feel like doing that. I could never do that to Dana and the kids and I just don't think it's a solution for me. Certainly not at this time at all and I would really have to be in a bad place with no options at all to even consider it. Even talking here about it is wigging me out. I think it's bad karma too.

I started this post on Nov 8th but did not post it then, not totally sure why. I probably didn't want to mention the "S" word in a post. My back is still killing me. I've been going to the chiro for two weeks and really have not gotten relief. I also had an accupressure treatment on Friday to see if that would work. I helped overall but it did not really lessen my back pain but it did something. At any rate, I have to go in tomorrow for the treatment. I'm not looking forward to it at all but I certainly can't complain.

On another note, I just watched the piece on 60 Minutes about Ed Bradley who died last week from a form of lukemia. I always like his stories and he just seemed to be a cool guy. I used to try to catch his Live from Lincoln Center radio broadcasts on NPR radio. He as a real fan of jazz. I was shocked when I heard that he died from that. I really had no idea at all. They were talking about how he had it years ago and it had come back with a vengance. That's the fear of everyone who has dealt with cancer I believe. I know that I have that feeling.

Monday, November 06, 2006

I Could Not Do It Today

I was supposed to get chemo today, but I was able to get them to give me the day off. I feel strange about it too. I have some legit reasons why I wanted to have the day off, but in the big picture, I just don't want to do it anymore. I know I have to suck it up and just take my medicine but I really have not gotten over the fact that I thought that I would be done with the chemo for Thanksgiving, and that is not happening. The last few times I went I found it so hard to do. I know I have to keep on with the treatments until my Onc says I can stop. I will be getting a scan in the beginning of December sometime. I'm REAL bad with dates now unless I have a calender in front of me. So I guess we shall see what the scan reveals. I doubt if it will be anything definitive, and that's probably a good thing. No news is good news, right? I just wish I knew when I might be able to stop it. I got off this week because Dana and I are going to see James Taylor this Friday and I really don't want to be dealing with any stomach issues and the way my schedule was set up, I would have been having chemo the Monday of Thanksgiving which would suck because I like to eat turkey and all of that. So now I was able to move everything over a week. A tradeoff was that I had to have the dermatologist dig at my infected Great Toe (their terminology) and numb it and cut more of the nail out. It really is one of the most painful things I've ever experienced in my life which says a lot. I'm also suffering now from chronic back pain. It's been an on and off thing for 30 years or so but lately it's real bad again. It's muscular this time instead of structural. At any rate, I'm trying to stretch and apply heat and cold to it. It still hurts.
So, that's about it for today I guess. I'm getting bored with both blogs but I'll most likely keep at it for now...

Monday, October 23, 2006

Hard to Take Anymore

I have been staying away from this blog for a while (20 days) I want to forget about cancer. I really hate it. I guess I hate the chemo more. I'm just finding it difficult to do anymore. I feel like I was hit by a 2x4, I ache all over. My side effects lingered for two weeks with the last treatment too. They weren't as severe I guess but I still had a lot of cramping. It's not like I'm plugged up or have the runs. Things move, just not normally and the cramping sucks. I was able to get off the drugs for the two week break but now I'm on them. At least I can do it when I have to so that's good. The last thing I need is to go from chemo to the Betty Ford Clinic.

Speaking of drugs, I have been kayaking more lately. I want to get some in before it gets too cold. I went yesterday during the day and it was great. I also went last week at dusk. I've been bringing a little pot with me and getting high (the high seas?) It really makes for an incredible experience. The lake is calming anyway but pot makes my senses more in tune I feel so the colors of the leaves and everything seem better. I'm sure it's not true but what the fuck, it makes me happy.

Tuesday, October 03, 2006

So yesterday was the first Monday that I did not have to go to the city since May of this year. They let me skip chemo last Monday so this is my second week being off of it. I start again on next Monday, Oct 9th. I'm not looking forward to it but I'm trying to ignore it for now and I'll deal with it next week. I have also been trying, with some success, to wean myself of self medicating. I'm real jumpy though and I can notice that my feet feel like they are in cold water much of the time. They are rather numb and although my toe is getting better I still can't wear a shoe. I did take an old pair of sneakers and cut the toe out so I can wear those in the rain and when I cut the grass. I'm still having some digestive issues although they are not so bad. My skin is still very dry and my fingers are splitting but not as bad.
later....

Monday, October 02, 2006

I Get It (Finally)

One can only try to kick the ball so many times before they realize what's going on.

Friday, September 29, 2006

New Colon Cancer Survival Rates

Or, Why I need to Stay off the Internet...
The American Joint Committee on Cancer recently revised its cancer staging system. There used to be four stages: 1, 2, 3, and 4. Now, there are seven stages: 1, 2a, 2b, 3a, 3b, 3c, and 4. A new study in the Journal of the National Cancer Institute reports colon cancer survival rates for each of these seven stages.

According to the study, entitled "Colon Cancer Survival Rates With the New American Joint Committee on Cancer Sixth Edition Staging,"
five-year survival rates for colon cancer are as follows:

-Stage 1: 93%
-Stage 2a: 85%
-Stage 2b: 72%
-Stage 3a: 83%
-Stage 3b: 64%
-Stage 3c: 44%
-Stage 4: 8%

Thursday, September 28, 2006

Why I HATE The
Assholes at the Helm

Poll: Iraqis back attacks on U.S. troops
About six in 10 Iraqis say they approve of attacks on U.S.-led forces, and slightly more than that want their government to ask U.S. troops to leave within a year, according to a poll in that country...

Bittersweet Boom
The Rush For Oil Floods Wyoming With Jobs, But Is It Also Spoiling The Land?
...Owning a split estate didn't much concern Wyoming ranchers until the current oil boom. "Many landowners didn't even know they owned split estates--until the oilman showed up at their door," says Morrison, who lives in the mineral-rich Powder River Basin in the north. Two years ago, two energy companies notified her friend Steve Adami of their intent to drill on his 5,000 acres in Buffalo. When he refused, they simply "bonded on"--the energy companies' practice of posting a bond required by the Bureau of Land Management (BLM), after which they can legally exercise their leased mineral rights. The size of the bond posted for use of 1,280 acres: $2,176, of which Adami has not seen a penny. "To get the money, I have to sue," says Adami, 51, whose ancestors were Wyoming sharecroppers. "That won't even cover my attorney's fees." He seethes at the 16 wells and miles of trenches that render a large parcel of his land unsuitable for grazing his 180 head of cattle....
The bureau, a division of the Department of the Interior, leases the rights by auction to such energy producers as BP America and Anadarko. But state officials say the agency is handing out leases too quickly, favoring the interests of oil and gas companies over those of citizens. (Many point out that Halliburton--former employer of native son Dick Cheney--is a major player in oil-field services.) Urged by the Bush Administration, the bureau approved four times as many applications to drill on public lands in five Western states in fiscal 2004 as it did five years earlier...

I'm pissed today and didn't know where to post. I won't get into it here so I'll attack another fav of mine, Mr Ruin the Planet - Bush. I feel so unsafe with having that jerk calling the shots. the world is such an unsaafe place thanks to him. And it's all about the OIL. So enough for now, I need to get to work.

Monday, September 25, 2006

Update...

Here's the story. My scan appears ok. There had been some spots on lungs that they are not sure what they are. It may be scar tissue, it may not be. Since my toe is still a problem, they have decided to give me two weeks off (for good behaviour) then resume treatment every two weeks instead of every week. The chemo can become ineffective after a while so they (Onc) feel that lowering my doseage and skipping a week and still getting scans every two months is the best way to go at this point. I don't really see things changing much for the future. I think this is going to be something I will have to manage from now on. My hope is that I will continue to ride the crest of the wave of cancer research and stay ahead of it.
So that's the scoop.

Somehow I knew this was going to be the story. I was talking with Dana about this and I said that I know I didn't will this to happen, but I certainly called it. I knew I'd get near the end of treatment and they'd go "Well...there seems to be something we don't really know what it is so we have to continue treatment...blah, blah, blah" This happened last year after the liver was worked on. There were some spots on my my lungs back then that were probably nothing but... So after I stoped chemo for a few weeks, they found out that the spots were indeed something (tumors) and I started the year plus treatment of that issue. So is the glass half full or half empty? I think it's a glass of piss personally. I don't see an end in sight, I feel I will be in treatment managing this condition forever. Surprising, I'm not as bummed as I figured I would be. I guess I'm just thrilled I won't be throwing up on my birthday this week. Two weeks off may not sound like much, but when you've been dealing with this shit for over 2 1/2 years it IS a big deal. I won't have cramps for two weeks and maybe my foot might get better so I can put it in a shoe. Well, I doubt that will happen but maybe it will get a bit better. I had to cut the toe area out of a pair of sneakers so I can cut the lawn. I had been cramming my foot into a sneaker but I couldn't take the pain of that anymore so I cut the shoe.

Anyway, the thing with cancer is that it is really never over. Once you have it, you're fucked. It is always in the back of your mind that it will resurface even if they give you the clean bill of health. Some lesser cancers caught early may give you the ability to be cured. I'm really fucking lucky to be here now. If I followed my first Doctor's advice, I'm sure I'd be dead by now. I just really hope that at some point, I can be off treatment for an extended amount of time and sort of have a normal life and not be doing the chemo and have all of these issues anymore.

Saturday, September 23, 2006

Following Boo's Lead...

I'm spent. I'm way too stressed as of late to do much blogging. The chemo's got me going nuts and my toe problems and splitting skin are a pain. I'm probably going to post my results on Monday, then I may take my final two months off from blogging. Maybe I'll just post pictures on Flickr or maybe the other blog, but I may even shut that down too. I really think I've run out of things to say at this point. The stresses of my daily life are mounting as is my daily intake of meds. Usually when I say this, I wind up blogging even more and looking like a nut.

Thanks everyone for your support

Wednesday, September 20, 2006

Two Years Ago

Two years ago today, I had my first surgery to start to remove the cancer from my body. It started around 5 pm, and went until something like 2 am. They took out a small piece of my colon, 60% of my liver, my gallbadder, lymph nodes and they installed my hepatic pump. I felt like I was hit by a Mack Truck. Today I had a CT scan. I see my Oncologist on Monday and if things go as planned I hope to hear that I only have 8 treatments to go then I can stop.

Wednesday, September 13, 2006

Not as Bad as I feared (so far)

So here I am at work yesterday. My friend Karen took this picture with my digital camera. She's teaching a course on Digital Photography at a local college. She's quite the photog, and of course, I'm the ultimate subject. So I cut my hair short and I think it scared the rest of it and it seems to have slowed down with falling out. Time will tell but it's not as bad as I thought it might be. Dana says I look like a coach :-)
(or was it a couch?)
I don't know why I'm joking, I'm in so much pain now with stomach cramps. Thank GOD I'm able to take some FML (Family Medical Leave) days this week. It was very good news that this was an option for me. OK, back to being miserable. I just took two percocets, a xanax and a phenobarbital. Guess what? Still hurting. They did a MAJOR toe job on me Monday too. It's not been well for about 10 months or so. The drug, erbitux, that I am on has something to do with epidermal growth factors or some shit. What the bottom line is that I have developed an ingrown toenail which would normally be a piece of cake to fix. This, however, gets stuck in a vicious cycle where it keeps getting infected and the skin keeps growing back under the nail. We are trying a different approach by taping a Q-tip on the edge of the nail to keep that skin away from the nail. The complication came when the Doctor had to numb the area via a needle. Now mind you, the skin there is so sensitive to the touch anyway, so having a needle stuck in it was so fucking incredible, it was a new level of pain. the worst part was that I had to sit there an wait for them to come back in to do the procedure. I still can't believe how much it hurt at the time. The good news is that it seems to be a little better. I also have to do yet another round of anti-biotics. At least this should all clear up when I'm done with the chemo in about 12 more weeks.
So that's the story.

Sunday, August 27, 2006

Update

I go Monday to SK for the midpoint evaluation. I talk with a nurse who works for my oncologist and we go over side effects and stuff like that. Well tomorrow I'll show up minus a lot of hair. I basically have a crew cut if you can even call it that. It's very thin and seems to be getting spotty too in the areas that I do have hair. I may also go out on partial disability this week too. I'll be able to collect pay for the days I can't work due to the side effects. Those are becoming more frequent lately. After all of this time I can't do it (the work thing) anymore. I think it's going to be a good thing. I'm also undecided if I'm going to wear a hat at work or just go with the new streamline look.
Whatever, I need a nap. I'm tired

Wednesday, August 23, 2006

It's not the Cancer,
it's the Cure that's killing me

So as many of you know, I'm real bummed. I've been dealing with this cancer shit for over 2 1/2 years and for over 70 something treatments. Now, as I come into the home stretch, the fucking cure is making the rest of my body fall apart. I didn't just post the pictures but I have links if anyone is curious as to what is going on. I now it's superficial and all of that and my hair will grow back etc, but it's happening to me and I don't like it and with everything else cancer related, I can't do a fucking thing about it except deal with it (or not). I just find it annoying that I've gone this far without this shit and now it has to happen?? My toe is getting infected (again) and is swollen and hurts like hell. My hair is falling out like crazy. I talked to the boys and Dyl said he didn't really notice, but when I tilted his head he was like 'holy shit' (not his words) He is upset although I assured him that it will grow back. I may even have him and Grif and Dana help me shave it off (thanks MyUtopia for the suggestion). I don't know when or what I'm going to do yet. I won't let it fall out in patches though, I do think the time is getting closer. My hands, which I did not photograph, are sore as hell with many little splits in my fingers. They are very dry and lotions seems to do little to help. I find it very hard to play guitar now which makes things even worse emotionally for me. And on the emotional front, all I feel like doing is crying or punching holes in walls. I have to take at least 4-6 percocets a day for the pains and a bunch of other shit to numb me so I can get through the day. This is the EASY week folks. I am investigating taking a disablity leave but I have 13 weeks or so to go and I only can get 6 weeks at 100%. I can get another 19 weeks at 66 2/3% but that won't cut it financially because we live paycheck to paycheck and are in a deep enough hole as it is. There is a chance I can work a week, then be off a week (repeat until I go through 13 weeks) but I'll still have to be a bald, rashy, cancer looking person at work for the entire time. I just want to crawl under a rock until it's over, but I can't. Please, if anyone comments, don't tell me I look good anyway blah, blah, blah. I'm just venting and showing you (if you care to look) why I'm so fucking pissed.
Head
Head
Face
My Toe

Sunday, August 13, 2006

Just What I've Dreaded...

This first picture was taken in early May, a few weeks after my lung operation. This second one was taken last night at like 2 am. I can't friggin sleep. I sleep about 4-5 hours at best. I've had 70 something chemos over the span of 2 1/2 years and it looks like finally, I may be having my hair fall out. Sure, I'm almost 49 but over the past few weeks when I get out of the shower and towel off, I see all of my hair all over my arms and other parts. I'm very depressed about this. I really thought that I was going to escape this with my hair intact. Being bald isn't the end of the world but it seems that I will also still have the rash (which isn't really present in teh first picture because things cleard up once I got off of the the Erbitux) so I'll have a rashy, pimpley fucking bald head. I don't feel I have the cranium for this either. I was so hoping to get through this last 4 months intact, but I don't see it happening. A year ago I was looking at do-rags because I thought I'd lose it then. I know it's superficial and all of that and there are many guys who are bald. This is more symbolic for me I guess. It's really a statement to the world that I have cancer, I could sneak by before because I had hair and really looked pretty good (IMO) considering all I've been through. So the next question is will it grow back? It should but there is no saying if it will. I'm really not ready for this. I was really depressed before but thank God for drugs, after a mouthful of them I'm ready to blog it and post the picture. This my resolve my previous post at least because I'm not oing to want to talk to anyone.

Otherwise, it's a nice day outside. I'm off to the farm. Dana has a wedding she is playing violin at this afternoon ($150 for the ceremony) then she has a singing gig in a coffeehouse in NJ (just for tips, she's lucky to get $10 but it gets her out and singing).

Tuesday, August 08, 2006

aches and pains and being naked

I'm in a major funk. I ache from head to toe lately, part of it is the cancer, part of it is a bad back. I finally took a vacation two weeks ago and all of the sitting in the car made my back act up again. I was rolling up the pool cover last Monday and I felt my back go. The pain got worse so I went back to my chiropractor. I'm starting to feel some relief but it surely is taking it's time. I have to take two percocets just so I don't ache in the morning. My skin is getting bad again with split fingers on my hands and cracked heels on my feet. My left toe, the one that's been trouble, is getting worse again. I had done a round of antibiotics two weeks ago to stave off an infection that was starting. It keeps happening to the same toe and if I bump it, it hurts. It even hurts putting a sock on it. It will probably recover when I finally get off of the chemo in 14 weeks or so. That will hopefully be it but with this shit you never know. I will have done about 90 treatments by the time it's over. I can't believe it. Now it's been about 2 1/2 years too that I've been dealing with cancer. It feels like forever. It's hard to remember not having to do chemo. I'm really quite bummed about all of this. It was so difficult to get started with chemo after my April 24th surgery. I loved having 7 weeks off from it even if they did cut an 8 inch gash in my side. Vacation was kind of interesting in that regard. I got quite a few stares in the beach. At first I was thinking I would wear t-shirts on the beach to cover myself and not show my scars. When I got there I said fuck it and didn't cover them. The only thing more disgusting would have been if I wore a Speedo I think. Maybe it was my imagination too, they could have been staring at my belly since it's gotten larger. Partly because I put on weight and partly because I herniated my abdoman after my first operation so it's a little more chunky than it should be. OK, I'm fat. Well I got off topic. I'm supposed to be bummed out. Well that's what 6 percocets in a day will do to ya I guess. I did just come back inside from swimming with Griffin. I had to close the pool for the night. I always cover it with the solar cover to keep the warmth in the pool. the air is about 67 and the water is 85 still. We saw the moon rising and plenty of stars. It's a very crisp night. We also both skinny dipped. It was Griffin's first time. It really is a wonderful feeling swimming naked. I doubt I'd ever go to a nudie beach but I have no problem with swimming that way in my own pool. So I started this post complaining and wound up naked in my pool. Not bad, I hope tomorrow is as good...

Tuesday, August 01, 2006

The Results are In

I got my CT results yesterday. Everything is looking good. I have another 4 months of treatments to go then I should be done. I am once again cautiously optimistic. I have begun to realize that I have a chronic illness, hopefully I won't die from it, but I will die with it. It is still very hard to wrap my mind around all that has happened over the past 2 1/2 years. I've lost track on the chemos, I'm somewhere in the 70+ area. I am looking at 16 more, 8 real bad weeks and 8 not so bad weeks. I just got back from a week on Cape Cod MA. I haven't vacationed in 9 years. It was wonderful! We all had a great time, it was fantastic to spend time with my family. I think this was the best vacation ever because it was the first with Grif, and the first since being diagnosed with cancer.

On a side note, a very dear friend of mine is having some medical issues. Please pray for her

Thursday, July 20, 2006

Update...

How do I start? I've been blogging a while, a little over a year, but I've had cancer longer. About two years and I've been married much longer than that, seventeen years in October. I bitch about all of these. This really isn't the forum for marrige woes but since I've posted them, I thought I'd also mention that I asked Dana to go to therapy with me and she accepted. We went the other day and it was a postive experience. It wasn't a finger pointing session which was good because it shouldn't be but it was a chance to clear the aire, voice our issues, and start to figure out how to get both of our needs met as much as possible. My therapist is real good. I feel she's helped me a lot over the past year I've been going to her. Dana's noticed a change in me as have I. So now we're changing things and it's been a big improvement.

I think anyone who's been in a relationship knows that they do take work, but they are priceless.

Side note - I go for a CT scan tomorrow. then we go to the Cape of Cod for a week (I get to skip chemo) then I'll get the results the following Monday.
Have a great week everyone

Monday, July 17, 2006

W A I T . . .

I'm here today for my 70th(?) treatment. I've lost count but I know it's around there somewhere. I got here at my usual 7:30 am and since today is my single dose day, I should have been out of here by 10 10:30 but instead, I have to see the dermatologist because my toes are all screwed up (again). She must be the only one in the entire city because there is always a wait. It's after 12 now and it's about 95 degrees outside. I should be home swimming but I'm not, not even close. My toes really have gotten bad over the past few weeks, this has been going on since the winter. I spent most of the winter wearing sandals as I still am doing now. My hands, mostly my fingers, and the heels of my feet are splitting quite badly. I started using a liquid bandage to help seal the gaps. It seems to help or at least help it from getting worse.
I wish I'd get the fuck in the office already!!!

Saturday, July 08, 2006

An Interesting Week Ahead

Today is Saturday, July 8th. It's a nice hot day, I'm poolside on the laptop. I may wind up running a line from the DSL line to the outside. It's wireless, but for seem reason it's flaky here. I was able to connect from my hospital lasat week when I went for chemo. I brought my web cam so I did a little filming. I was trying to connect with the folks at home but it didn't happen. My wife and kids are headed down to the Jersy Shore this week. Dana's Uncle Jack is renting two houses down there, one for his side of the family and one for Dana's side. Her uncle and her Mom are brother and sister. So, if everyone goes with their little kids there is the potential for 45 people being down there. Dana's family is very nice, I get along with them but spending a week there would be rather difficult if I felt good but this week coming up is my dreaded double dose week so I think I'm getting a pardon from the governor so I won't be going. I really would like to go for a few days but I'll be busy puking and either shitting or not (still not sure which is worse. The asshole is the boss of the human body though (and how). If it's not working everything else shuts down. I'm not even going to start to feel better until sometime Thursday. We are headed for a vacation to Cape Cod in afew weeks so I can wait for that. Also that is going to be coming off a good week. I will be having a CT Scan the Friday before I go so I should be nice and distracted so I won't worry about the results until after I get back. I kind of want to get into other stuff here but I'm not sure I will now. It's basically the same shit, different day. Let me say this. We took 7 kids, only two are ours and two were these girls that Dylan has been hanging around with, to the movies to see Pirates of the Carribean, and I paid for everything. I loved doing it, we were the cool parents. Someone else wasn't as thrilled about it as I was. Life's short, too short. Enjoy it.
~see, same shit, different day
PS: I don't know what posessed me, but I asked Dana if she would go to couseling with me. I asked her my place or hers (meaning therapists) We will go to mine. We're stuck big time. There is the cancer stuff and the normal marriage stuff. We'll start that next week. Let the fun begin.
Today already I've had to deal with a bunch of computer related stuff. I can't believe how much they fuck that machine up.

Friday, June 30, 2006

Now and Then...

I'm feeling a lot better today. I set up my Tiki lamps by the pool last night and swam for a long time. I really like Pete Townsend and this song too. I don't know if there's a secret message in this post

Thursday, June 29, 2006

And There's One "I" in Alive

I survived yesterday and last night. It was one of the worst so far. The nausea has been a new thing over the past few months. I think I'm 1/5th of the way to being done. I sure as hell hope so. Sorry for the drama, I wrote what I felt

Wednesday, June 28, 2006

There's No I in TEAM
But there's Two in Idiot

Chemo 66 was Monday, I think, I'm losing count, I was up since 3 am puking and trying to shit. I came into work at 7 am. I'm in so much pain I wish I was dead. I hate to say that because I really love life but those of you with cancer can relate I'm sure. Why the fuck did I come in today, the world won't end if the book doesn't get out...

Tuesday, June 27, 2006

Beautiful Boy

I listened to this on my way to work, I lost it.

Close your eyes
Have no fear
The monster's gone
He's on the run and your daddy's here

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Out on the ocean sailing away
I can hardly waitTo see you come of age
But I guess we'll both just have to be patient'
Cause it's a long way to go
A hard row to hoe
Yes it's a long way to go
But in the meantime
Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better
Beautiful, beautiful, beautiful
Beautiful boy
Darling, darling, darling
Darling Sean

Saturday, June 24, 2006

Sex, Drugs and Rock & Roll

Now that I have your attention, I'll start my post. I haven't been posting as much as I used to. Part of me feels that I want to draw my focus off of the cancer/chemo and just ride it out. It's not that the side effects are easier, it's just that I've done this 65 times. It's fucking boring. When I first went on chemo, I had a different regimine. It was an every two week deal. I would go on a Friday, get many hours of stuff (4 I think, I have probably blocked it out) then I was hooked up to a little pump about the size of an old walkman tape player. That had a bag of meds that was pumped a little at a time for two days. I had the needle in my port that is in my upper chest. At first, they gave me a bag to hold the pump and the meds that was big enough for a loaf of bread, It was huge. Then I was able to fit it into a nice fanny pack and no one really knew I was on chemo. Then, on Sundays, a nurse would come up to the house and needless to say, our clothes were off and ... oh wait, wrong story. Right, the nurse would come up and remove the needle and flush my port blah, blah, blah. Fuck, all I'm doing is talking about chemo. Ok, so now I'm drinking a Saranac Mountain Ale and it is hitting the spot. I also took a few percocets earlier and just finished smoking a little nausea medicine (wink). I feel good. Monday I go for the double dose and I won't feel good so WTF I say. I was reading part of an article in The New Yorker about Timothy Leary, the LSD guy. I've done LSD many times. I probably did more chemos though and LSD is WAY more fun. The last time I did it was probably about 20 years ago when I was 28. I was an avid mountain biker at the time. I didn't race or anything like that but I would ride every weekend. My buddy Henry and I drove to NH and biked up Mt Washington which is the tallest mountain in the NE United States. Also, the highest wind speed recorded ON THE ENTIRE PLANET was recorded there. 233 MPH. We also biked up Mt Mansfield which is the tallest mountain in VT. Both of these mountains had roads but still, it was a fucking climb. The bottom photo is me (far left - in more ways than one) with some friends while we were on acid for the last time. Me had made Spanish Omelets with psilocybin mushrooms in them. I enjoyed them a lot. So anyway I got to thinking that if I had the chance to do the shrooms as we used to say, I most likely would do them even (adn especially) since I have cancer. I'm not afraid of my age being a factor with the shrooms, it was always a nice mellow high. I have been feeling very connected to that cosmic consciousness as of late. Yeah, I know, it's the pot, percocets and beer. Be that as it may, I have been connected. I'll leave it at that. This has been going on for well over two years. I don't see any shrooms in my future because I know no one who is into that and I would not seek them out. I do think I would enjoy it a lot but I'll probably never find that out...

On top of Mt Washington in August

On Mt Mansfield

In the woods back in the day

Ripping at Mohonk NY

Monday, June 19, 2006

Mistaken Identity


I was coming back from chemo around 11 am today. I saw a beautiful Asian woman who looked so much like Boo. I stopped and said hello to her. She was not impressed. Oh well, I had to say hi to her.

# 65

I'm in for # 65, Last week sucked. The side effects, while not as bad as they CAN be, were still painful. I am finding that the last few rounds have caused more nausea too. I do have some pill meds for that, but I'm going organic on that front and smoking a little reefer. It's been proven that it lessens the side effects but if you believe the a-holes at the FDA, they would disput it I'm sure. Let's see what they think if THEY have fucking cancer. A different story I'm sure. I didn't feel like posting last week, I did on my other happy blog. I'd rather just try to make like all is well. I also had a problem with one of the nurses her last week. she set up my pre-meds, then left for a meeting and never started my chemo meds. An hour later the a different nurse came in and noticed that the one never started it. I was LIVID to say the least. I was beyond LIVID. I just went back there a few minutes ago and told the woman who schedules everything that I do not, under any circumstances, what her again. One other time she had to jab me 3 times before she got the needle in the port. I don't need this shit, I don't want this shit, and I'm not taking this shit. This is a great side effect of the cancer. I have ZERO tollerance for a lot of stuff and I'm not afraid to tell someone off. I realize everyone can have a bad day, but she had two and her quota is used up in my book. NEXT...
I had a very good Father's Day yesterday. The kids gave me nice cards, Grif made something in school for me, and Dana got me a nice Farberware cooking set. I do have to return it because it's the non-stick stuff. I don't like that plus it's not really good for you. They say that too much heat can cause it to release carcinogens. I'm thinking of the kids more. The only thing is that they require more care. Dana and cookware do not get along very well. She has even melted a saucepan once. I did manage to do a lot of swimming this past weekend, it was great weather for it. I hope to do more tonight. Well, I should start chemo soon. I did relink my happy blog to this one again. I'll see how it goes. I"m sure I'll get nutty again and de-link it.

Sunday, June 04, 2006

# 63 The Rash is Back

I have the second one of this hopefully final round of chemo in the morning. I just did a guestimate with how many more I'd have. It was 6 months so that's 26, If this holds true I will have 24 more after this one. My skin had gotten pretty bad. This first picture wasn't even when it was that bad. I think I look more pained because I seem to have a kayak inserted into my head.



This other picture was taken maybe a 3-4 weeks ago while I was home recovering from lung surgery. My skin was noticably better. That is the real bummer about the Erbitux. It wreaks havoc with the skin and nails. My rash is starting again already. It's getting bad on my face and torso. I do have some creams to put on and I guess it helps somewhat. I have heard too that many people have it worse than I had it. I'll be happy if I get the same reaction this time. I still can't get over how I've had 62 chemos and still have hair.

An interesting thing is how people perceive me with the rash. I don't always notice it because it's on MY face, I don't have to look at me. The rest of you do. I've had people stare and walk around me like I have leporsy or something then others pay me no nevermind (whatever the hell that saying means). I find if I act natually, most people don't make a big deal out of it. None the less, it's a discomfort to say the least and it looks creepy but this is a wonder drug that is saving my life. I have been fortunate that two new drugs came out for the treatment of colon cancer in the past 2 1/2 years. I've had both of them. Some people's insurance companies won't cover the cost (about $17,000 a pop) so they are either having to pay for it themselves, or seek another treatment. That's another thing to be grateful for.

My sister in law's friend has a sister who was recently diagnosed with colon cancer. I don't know what stage she is at but she did have colon surgery first and now this week she is getting a port for administering chemo put in and she starts chemo this week too. She kind of wants to talk to me and I was like sure, of course. I'm rather up front with all of this and anyone who is in the same or a similar boat I am more than happy to speak with. I had called one guy in the city who's wife was having a pump put in too. We spoke for about an hour about what she could expect from it and how it feels and all of that. This new person though is very shy about talking about it it seems. She wanted to know (or had heard) that I have a blog. Now, no one (with the exception of a co-worker who I trust) has read my blog. My wife knows I have one, but she never demanded or even asked to see it and I never offered to let her. She knows it's like a journal and respects that. But, I do have two blogs and I have written some things that may not be bad or false, they might cause me some problems shall we say if the wrong people read them so I don't want to let this woman see the blog because it could get back to my SIL, then to my wife, then I'd have to eat a meal that she cooked for me and I'd be a dead duck. So I offered to contact her by email if that makes her more comfortable. I do hope she writes me but I'm not going to lose sleep over it by any means. I do find it helpful to talk to others who are going through what I am because they can relate to the puking, depression, anxiety and all of the other fun things about chemo and cancer. It's almost midnight. I'm still kind of wound up. I have to get up at around 5 am, then leave for the city by 5:40 so I can be on the East Side by 7:15. I do have only the single dose tomorrow so I should not have too many stomach issues and I can get out of there by 10 am and off to work
(I hope)
I didn't realize I had so much to say tonight...


Tuesday, May 30, 2006

# 62 done, 25 more to go

I had chemo yesterday (Memorial Day). It went well, it was an easy commute in and out of the city. I am starting to feel like shit already, I started the morning off with a nice puke. Probably due to the megadose of chocolate Ice Cream after the grilled spring onions. I'm back at work today also. I have to get aclimated to it again. At least I see my therapist today. I feel like crying because I don't want to do this anymore but I have no options. I'm not as brave as many of you may think at times

Sunday, May 28, 2006

Last Day Before Chemo Starts Again


If the movie doesn't play, you can try this
link or right click it and save to the desktop.


Saturday, May 27, 2006

Good(ish) News

I don't know why I have trouble absorbing good news, but I do. My Oncologist said I may just have 6 more months of chemo then I may be done. The operation was a success, my lymph nodes were negative for cancer, and they got the two spots of cancer out.

Wednesday, May 24, 2006

"D-Day" as in Doctor Day

Today I meet with my Oncologist. Scared shitless right now, waiting for the percocets to kick in, then the xanax. I'll post results later

Wednesday, May 17, 2006

Fuck

I can't believe how much BS I get from my family. I ask Dylan to make sure he has clothes for his concert yesterday and guess what, he has no fucking clothes and the concert is in 45 minutes. Dana's no fucking help either

Monday, May 15, 2006

Blah....

I had been doing ok with the surgery, although I still hurt a lot unless I take many percocets a day. I woke up this morning however throwing up and with the shits (at the same time of course) I hate all of these side effects but I'm not on chemo so I'm not sure what is happening and why. Probably something I ate. I will most likely start chemo again in a week or two. Not looking forward to it at all. I really hate it.
I can't believe these past two years. I just want to cry, I wish it would end (happily).

I've upped the amount of percocets I'm taking again. I had been eating about 12 a day and the funny thing is that no one can tell that I'm high. I've always been good at being high, but not acting or looking it. I guess its probably more of a curse.If I got caught at it more often I'd probably stop it. so now I'm back to taking more. It just feels like a hot knife is jabbing me around the area under my right breast and rib cage. I imagine that is where the removed the part of my lung. I can't feel were the lymph nodes were removed. I hope to ask him this week when I meet with him. This morning was very rough too because it was the first time I puked since I had this operation. That hurt the area where they cut me very much. I also had a sneezing fit and that was unbearable. Luckily I'm not big on the allergies or I'd be fucked.

I was supposed to go to have lunch with some friends from work today. It was my friend Debi's bithday. I just work with such a remarkably wonderful bunch of people (and most of them are women too which makes it even better because they are all supportive and are very easy on the eyes if you know what I mean. Hell, I'm sick, not dead. I think there was also part of me that didn't want to deal with all of the questions and comments too, but I know I didn't fabricate this. Jeeze, today was only the third week since my operation. I will say this, I seem to heal reather quickly for the most part.

I hope I sleep better tonight. I see my therapist tomorrow. I told her that she looks great in peach colored capri pants. I actually said "You look peachy". I know I broke some sort of ethical code of not being able to compliment one's therapist. hey, she's an attractive woman and she looked realy great in the pants. So shoot me

Thursday, May 04, 2006

Roller Coaster

It's amazing how much I rely on my medications. I didn't take anything for pain yet today or any of the many other meds I take, and all I can think of saying is FUCK EVERYTHING.
It occurred to me that my new normal is like the same ones I've had for the past 26 months. I'm either on fucking chemo, or I get a break from chemo because I had another part of my insides cut out of me. Hardly a break, ya know? I'm also participating in an acupuncture pain study. They taped these small needles onto various parts of my body that may or may not be in the right places depending on if I have the placebo ones or the real ones. I get phone calls asking me about my pain. Is it a zero (no pain) or a ten (much pain). How the fuck do I know. You dive into a pool of water and you're wet, that's it. If they asked me 3 years ago how much pain I'm in, I'd have a much different answer. Now, I've been in constant pain since Sept 04. Period. Some days I act better than others and some days I take 14 percocets. Do you have a fucking 15 on the pain scale lady? That's where I'm at! I'm so tired of this grind. Now I'm off chemo while I heal (at least I can shit in peace) then I get an x-ray on May 18th along with a CT scan that day. I will also see the lung surgeon, then see the foot doctor who will no doubt cut up my nails with no anesthesia. Then the following week I will see my Onc who will tell me the wonderful news about how we don't know why your abdominal lymph nodes are enlarged but we'll hit you with another 40 rounds or so of chemo. Gee, will it be the same stuff or something else? I turned off comments because I don't want to hear any. No pep talks. I'm sure in a day or so I'll be able to fake it again and will turn them back on.

Monday, May 01, 2006

Don't Click on My Ass

What the heck do you all know? I know you only want me here because of my booty, but that works for me. Thanks, you're all great friends.
"you like me, you really like me"

Sunday, April 30, 2006

Coming Along

Things are coming along, I still have trouble sleeping because it's difficult to lie down but the pain is getting a little less each day. I need to start walking more to build up my lung capacity. It's very beautiful up here in NY State with the trees blooming, I want to take it all in and enjoy. I know my last couple of posts have been rather depressing. I don't know how many out there have had major surgery, but it really sucks (cancer aside). I do feel like site is becoming too pathetic so I may cut back on my posting unless I really have something to say.

Saturday, April 29, 2006

Post-Op


If the movie doesn't play, you can try this
link or right click it and save to the desktop.


Friday, April 28, 2006

Butt Friday

Boo and Paula, this one's for you ladies. The Erbitux had made my beautiful blemish free butt no longer blemish free. I do think I'm on too many percocets. Now that I've done it, I think EVERYONE should post pictures of their butts on Butt Friday. The tubes are out, I got through the night okay and I'm set to go home. As usual, I expect some nonsense about the papers not being in order or something delaying this. I have been telling them since I saw the Doctor at 6 am that he said I can go, I am calling Dana, and I am leaving at noon. I don't want them to telling me at 11:45 that I need an xray or some excuse. I really get very antsy and I can't and won't stay around. If I have to bust out of here, I am doing it. It's going to take a while for me to get back to some sort of normal. Hmmm, maybe this is my new normal for a while. I do have to finish sealing the deck in the back of our house so I can do that while sitting and just take my time. I still can't believe that I was in for another surgery, I thought it wasn't going to happen. You just never know what life is going to throw your way do you...

I better not see my ass floating around the internet ;-)

Thursday, April 27, 2006

Tubes Out

Yes Phillie, there is a Santa Claus. I had both tubes taken out this morning. I was just getting ready to go into the bathroom to freshen up (I can't shower for another 2 days) then the Doctor comes in. She asked if I wanted to wait to have it done, which I did not want to wait. She then proceeded to take out the chest drainage tube. That sucker hurt while it was in there and when they took it out, it was the strangest sensation and it was rather painful too. They do have you take a few deep breaths first, then they pull it out in one full swoop. It's like taking off a bandaid or diving into cold water. You just have to do it. It feels much better now that it is out. I still have pain and I can't take a full breath without pain, but in the scope of things, it isn't bad.

Then, I had ordered breakfast and then went to get cleaned up. My food gets there 45 minutes later (as usual) and just as I'm ready to start to eat, some gguy comes in and tells me I need to go for an x-ray. I get one taken every day so they can monitor my lungs. They have you wait in a smalll room, about 6 of us, all in wheelchairs. Some people you can tell are really in bad shape. Others, like me, look fairly healthy. It just goes to show you that you never know. I get wheeled in and they take two shots. One is a portrait and the other is a side profile. It takes about one minute to take the shots. Then you go back and wait until someone comes and gets you. This always takes a long time. Finally, they get you and bring you back. I get all settled in and my nurse, Steve, comes in and asks if I want to have the catherter out or should I finish breakfast. I wanted that one out so bad. I think the only reason I had it in was because they want to monitor how much fluid is coming out of you. So, him being a guy he is more sensitive to the male anatomy than the averrage female nurse. I know I'm making an assumption and the other times I've had it done by female nurses they were gentle too. So that is taken out rather slowly. It's a very strange feeling. Now I have 8 hours to produce or they will have to stick it back in me. A good motivator.

So now I'm on oral painkillers (percocets) instead of the IV stuff. I think they will work fine. My sister and her husband came by last night for a few hours and Dana is planning on coming in this afternoon or early evening. I am supposed to get discharged so I'm even wondering if it would make more sense to have Dana come in tomorrow instead and then drive me home. I'm supposed to keep walking around so I bettter get cracking. Speaking of that, Boo, I tried to take a picture of my half assed gown with my camera phone for HNT, but it was not pretty.
xo-phil

Wednesday, April 26, 2006

Wednesday


So this is the view bacally from my window. I'm really north of the bridge looking south. The food here is pretty good. I had sirloin tips last night and the breakfasts are ok too. It's just nice to eat. Larry bought an oange over this morning on his way to work. I've been having a low oxygen reading in my blood lately. Actually, every time I'm in a hospital I have that so now I am oxygen. I have this cart with a tank on it that I have to wheel around. My chest still hurts, I've heard that much of the pain is from the tube that is in my side and up into my lung. They say that when they take that out, it gets mch better. That may be tomorrow. Yesterday they told me it could be today. This is typical. I'm so fucking antsy, I just want to get home. I'm not sure what is going on with the nurses either. The last two I had are male nurses. Maybe Dana is picking them out for me. From where this computer is I have a nice view of the Chrysler Building and of the CitiCorp building. If all goes well, I'll be home by Friday. Dylan has his blackbelt test on Saturday ($200) I can't believe how expensive it is. He better not get beaten up. I know I'm rambling but I'm on pretty heavy meds but I've done worse. I did get a looksie at my incision this morning. It travels up from mid ribcage to under my armpit. For some reason I thought it would be a lateral cut. They were trying to do a muscle sparing technique. My boss called me up yesterday evening. He's been very supportive throughout this whole ordeal. Well, let me post this and get back to walking. They want me to do at least 1 miles per day which is 14 laps around the floor.

Tuesday, April 25, 2006

Still kickin'

Hey everyone. Am I a blogging addict or what? I'm here with a lovely hospital gown on with a second gown over me so my arse doesn't hang out. I'm staying on the 14th floor but the have a recreation room on the 15th floor with two compters in it. They also have foosball, puzzles and an outside patio. So the surgery went well (thanks Karyl for posting the update). It was about 2 hours long and there were no complications. My first surgery was about 8 hours long. This one isn't too bad. My chest hurts from the incision and from having a tube in my lung to help drain fluids out of it. My nurse is going to change the dressing on the wound so I'll get to check it out. One thing that's a drag is that I can't shower now, only sponge baths which is not even close to getting clean. I also find it very hot in here. I brought a small fan with me and it's a lifesaver for me. I also have my iPod Nano so I'm set. Well, I'm kind of spacing out here so I think I'll sign off. Thanks everyone for your support.
x-p

Monday, April 24, 2006

Show Time,,,

Here I am in NYC at my brother's apartment. It's almost 11pm. No more food after midnight. All he has are Cherrios. This is rather amusing for me because EVERY Thanksgiving, I hear about the time I wanted Cherrios instead of turkey. He must have planned this. Hey, I was 5. The surgery is at 10:30 am, they want me there at 7:30. They made a point of telling me 2 times not to use deodorant in the morning. I almost told them I usually don't put any on until Wednesday of every week so it's no problem. The surgery should be about 3 hours long. They are going to use a muscle sparing technique on me. I'll wite about it after. My friend Karyl will be posting some updates on Tuesday and Thursday. I should be home after that. Karyl is awesome! We work together and it is always a fun time. She also baked me the greatest apple pie on Friday. It was still warm when she brought it in. Thanks everyone for you support. It means very much to me. xo-phil

Sunday, April 23, 2006

Show Time...

Here I am in NYC at my brother's apartment. It's almost 11pm. No more food after midnight. All he has are Cherrios. This is rather amusing for me because EVERY Thanksgiving, I hear about the time I wanted Cherrios instead of turkey. He must have planned this. Hey, I was 5.
The surgery is at 10:30 am, they want me there at 7:30. They made a point of telling me 2 times not to use deodorant in the morning. I almost told them I usually don't put any on until Wednesday of every week so it's no problem. The surgery should be about 3 hours long. They are going to use a muscle sparing technique on me. I'll wite about it after.
My friend Karyl will be posting some updates on Tuesday and Thursday. I should be home after that. Karyl is awesome! We work together and it is always a fun time. She also baked me the greatest apple pie on Friday. It was still warm when she brought it in.
Thanks everyone for you support. It means very much to me.
xo-phil

Friday, April 21, 2006

A Few Days Left Before Surgery


If the movie doesn't play, you can try this
link or right click it and save to the desktop.

I probably went on too much about the tube in the nose. As you might guess, I'm not a fan of it


Thursday, April 20, 2006

A Few Days Left...

So here's my scars and the inside of me showing my pump. I have finished the treatments as far as the pump goes, but that will stay inside of me for another 4 years or so. I never in a million years thought that I would go under the knife for anything. I've always been on the healthy side. I did smoke cigarettes and a ton of pot in my day, but I also used to do a lot of bike riding. I took two big trips up through NY state, each one about 700 miles round trip. I was a big tennis player too. One thing leads to another and you get married and have kids and the exercise slows down. Still, I always managed to get out hiking or something. Two summers ago I discovered kayaking and went 81 days in a row to prepare for my first surgery. Now, I kind of don't know what to do to prepare. I'm not going to be kayaking now. I will squeak in a day or two before Monday, but the surgery will put an end to that for the time being. It will be a good incentive to get better fast. I love being out on the lake. Now, I'm just trying to immerse myself in work and taking percocets like M&Ms. I want to just mellow out for now or else I'll be a nutcase. I'm getting an I-Pod today too, the 2 gig Nano. I decided to treat myself. I talked to Dana and without hesitation she said 'go for it'. She's a great person, wife, lover (bad cook). You can't have everything can you? Why do I still get strong feelings for other women? I think a lot of it comes from the situation that I am in, other times I just think I'm an idiot. Being faced with cancer does make one do odd things and look at other things in a different light. I started to think last night while trying to get to sleep how they are going to be cutting me in my ribs (4-5 inch cut) then spreading the ribs and going in and removing all of these lymph nodes and cutting out the last tumor. I never realized we had so many 'spare' parts in us that are really not needed. I tend to think we do need them, but they are defective now so they are no good to me. I don't know what to expect with losing more lymph nodes. I think they are important for the immune system, but I've been sick only once or twice in teh pst two years so go figure. I must get back to work now. I do hope to maybe do a video post before all of this happens.

One thing that sucks that I've come to realize is that I don't think I will ever be 'cured' of cancer. I used to think I would be. Now I think it will be a chronic condition that I will have to manage. Not too bad, It could be worse.
-p

Wednesday, April 19, 2006

Surgery Again

So this was a surprise to me. I went in to get the results of my PET scan thinking that I would be told that I will just do more chemo. My Onc thought we should present my case to a thoratic surgeon, so we did. He felt it was a good ide to go in now and take out the remaining nodule, plus my lymph nodes in my chest. Now I'm set for surgery on Monday, 4/24. Wham bam here I am. I hope this is nothing like that last time I was in the hospital, that really sucked. I think once I'm through the surgery I'll be back on the chemo wagon. It's been 61 treatments so far, I still can't believe it but I'm ready for this. It's amazing what you can do when you are backed up against a wall...

Wednesday, April 12, 2006

PET scan to come

The thing that gets me is that I seem to get close to being ok, then I find some other shit out. Last spring it was the liver was ok, but the spots in my lungs were indeed cancer so I started the 40 weeks of Erbitux that I'm on now. Now, I have that one faint tumor left, but my lymph nodes (which were larger than they should be) were on the screen last June, now it may be an issue. The thing that sucks with the PET scan is the best I can get is positive BAD news. They can't tell me good news with it so it's a wait and see. I'll probably be on chemo for the rest of my life in some capacity, not a pleasant thought for me.

I don't think all is lost or anything like that, the wind is out of my sails a little but in the big picture, I'm doing really well with all of this.

Thursday, April 06, 2006

Wait...

I repeat myself a lot. I'd like to think it's only from the chemo brain but's it's probably old age too. So I sit and wait for results and I sit and wait for side effects. This week is different because I really don't have any physical ones. Emotionally, I'm a fucking nutcase. I do see my pattern that I've created though. Dana is very supportive but I know she gets scared at times although we both feel I'll get through this. I do feel I push her away a little. I tend to get clingy with some work people and bloggers and my SIL. She's got her own stuff now so I think she feels a solidarity with me. It goes beyond that too but that's enough for this blog. My stomach does not feel great but in comparison it's not too bad. My toe is getting weird again and I still have the numbness in my feet. That's going on two years now. I feel like I have hobbit feet (fuzzy)
back to work....

Wednesday, April 05, 2006

# 61 and a CT Scan

I had chemo #61 this past Monday, plus I had a CT scan yesterday (Tuesday). I really just feel like crying today. I don't expect bad news next week, I am hoping for the status quo or a slight improvement meaning further shrinking of the final tumor in my lung. Of course I would love to hear that the final one is gone then maybe I can stop chemo in 6 months. I often can't believe how many rounds I've had and how well I have held up. I didn't think I had it in me although my kids are a big motivator for me. I have to go meeet with some prople from a local library this morning, I do freelance work on the side and I have been blowing everyone off lately so now it's time to knock that shit off and get back to business. On another chemo note, my big toe is acting up again. I do see the Doc next Monday (after I get my results back) so I'm sure she will cut up my nail again with no numbing it as usual. I'm also amazed at how much pain I can endure. I'm past the two year mark with my diagnosis but I've really about had it. I went out with my brother last night when I was done with my scan. We went to the All State Cafe again (where the woman from Looking For Mr Goodbar was murdered) they do have great burgers and I had 2 pints of their own ale. I'm really not supposed to drink but I feel like 'Fuck It' at this point. I need to reward myself. Well let me compose myself and not cry (at least while I'm working) and also see what side effects I get hit with. So far, so good although I thought I was going to barf last night. I did take a hit off the joint so maybe that helped? I can't do that here, I need extra brain cells lately.

Monday, March 27, 2006

# 60

Here it is, chemo # 60. It's been over two years since my diagnosis and over a year and a half since my first surgery. I've been hoping that I can avoid more surgery and so far, so good. I have a scan scheduled for April 5th so I'll see where I'm at after that. This past week was really tough with the side effects. It does look like this is what I can expect with the double dose every other week. It's been 3 times I had it happen so I'm beginning to think this is the new normal for the time being. At least this morning, things are back to normal. As per my wife's suggestion, I scored a joint from someone I know. I think the point was to wait until I felt nauseous, then smoke some but I took a hit yesterday and had a blast with the kids playing mini golf and I made a killer pot roast that tasted great! It is amazing how it didn't take much to get a buzz at all. So I hope to be out of here by 10 am or so, then off to work. I hope that somehow I can get either the software installed on my home PC so I can work from home on days like I had last week or that I can get a laptop, which would be nicer, but I'd do either...

This just in...
Once again they dropped the ball at SK. They didn't give me my chemo until around 10:30. I used to get out by 10:00. I went back and spoke to the liaison between the pharmacy and the rest of the people. She was very nice and told me to just see her every week and she'll make sure I get out on time. I wonder if I'm the only one this is happening to? They did give me a $15 gift certificate for Cafe Europa (whoop-de-doo). At least I know who to talk to to get things expedited.

Saturday, March 25, 2006

Saturday

Here it is, Saturday. I'm still rather 'loose as a goose' although I slept pretty well last night so that's a good sign. I'm really feeling very alone lately. I can see how my mood is so affected by my health (or lack of it) and when I'm feeling poor, my mood is shit. I had a stretch of about 2 months where I had figured out how to deal with my side effects and things were really pretty good. Now I'm into this new stuff and I feel rather depressed. It's such a rollercoaster. Just when I think I can cut back on the therapist, I get this. I suppose I can still do that because I seem to be much more aware of how I am behaving and of my unhealthy habits (not that I still don't have some of them but at least I'm aware of them) Dealing with the nasuea is a new thing. This really surprised me. Dana suggested getting some pot to stave off the side effects. I don't think it's a bad idea but I do have to watch it with that stuff, I was really heavily addicted to it for many years and have been off of it for about 6 years. I'll have to see, I'm open to it I guess. I don't know what to do with myself today. I had big plans to go to Home Depot and to some other stores, but all I feel like doing is sleeping.

Friday, March 24, 2006

The New Normal? I Hope Not

I use the term 'The New Normal' a lot. It seems that every few months my body has to adjust to something new. First was the side effects of the first rounds of chemo, then it was surgery, then it was post-op, then it was new chemo, then it was lung tumors, then it was new chemo, now it's new side effects from the chemo. I had 55 treatments with pretty much the same side effects. Mostly constipation, rarely nauseous, numbness in hands and feet (which I still have). Now, over the past 4 treatments, I seem to be getting the shits and throwing up (plus constipation - go figure) I really fucking hate it. I was up most of the night doing one or the other and now I won't be able to get into work so there goes another sick day, plus I have deadlines to meet. I miss my old normal, but that died 2 years ago....

Monday, March 20, 2006

New Staff...

It's chemo day again. Number 59 in a series of who the fuck knows how many. Probably another 50 or so? There is a new woman at reception here. Last week she screwed everything up by not bringing my paperwork back to the lab, and this week she is starting to screw it up again. I miss Leigh. She was always very nice to everyone and things never fell through the cracks like what is happening with this person. I think I had to have another blood test that was not needed. Yeah, stick me again with a fucking needle. Anyway, I'm not sure what is going to be my side effect today. It's either going to be the runs or the no-runs. Time will tell, I'll know by Tuesday night. I had started to visit this guys blog deadin90.blogspot.com. He claims to have cancer and he will die in 90 days. He is planning on commiting suicide. At first I thought maybe it was real but the more I read his blog, the less it made sense. He did not sound like someone with cancer adn he will not tell what kind he has because he thinks he can be tracked by that. Plus he claims to be a cop too adn he just seem like he is. I called him on it and he seems to be pissed. I did a search on him and some other people seem to think he's a phoney too. Today I couldn't find his blog. Maybe times up? I think not.

I took a kayak ride yesterday, the last day of winter. It was great. A little cold but fun anyway. Well it should be chemo time soon.

Monday, March 13, 2006

I'm a Little Pissed

Ok, sio I get here at my usual time and there are new people at the desk. Leigh told me last week that she was being moved to another floor. This woman didn't seem to be on the ball. the usual routine is that I show up around 7:30 am, they check me in and within 5-10 minutes, I got to the room to have my blood drawn. I looked around today and there seemed to be a few more people there than usual so when 15 minutes rolled around I didn't freak out. Then it was 30, then 45, then 1 hour. I went to the desk and asked what the deal was. She said she'd check. She comes over to me and did appologize and said it was her mistake that the paperwork didn't get back to the lab so now I'm 1 hour behind. this really sucks because I am usually out of here by 10 am on the single dose days and now it's 9:15, I have to still see the nurse and then wait for the bloodwork before I get chemo. It's going to be dragging all day. I guess this should be my only problem, right? I still will have to see if my new normal is going to be the shits and throwing up for a few days. I was just figuring out the constipation and I had that under control. I'm wondering if it's a slight cold that has been causing all of this. The strange thing is that I really haven't had much in the cold department since all of this started but my nose is a little stuffed so maybe it is. At any rate, I need and want to get to work after this, I hope the wait is not too long...

Thursday, March 09, 2006

The New Normal

I haven't posted in a while. Mainly because I feel somewhat better but also because I feel I keep defining myself as a cancer person, not even as a cancer survivor although technically I am a 2 year survivor. My last scan ws good. I went from 9 tumors in June down to 1 left now. We actually talked about stopping treatments. This could take place in about a year so it's a ways away but it's the first time it's been mentioned. The thing that is concerning me now is that for the past 3 treatments, I've gotten bad diarreha and also have been throwing up. The runs last for a few days and even taking Amonium AD (or whatever the fuck it is) doesn't seem to stop it. I sleep with one eye open and one foot in my slippers at night. I'm up at least every hour for a round or two. The puking only seemed to be for one night but it's happened two times so that has me bummed out. I hate to puke. so here I am at work after two nights of little sleep trying to get things done. It sucks

...this just in (or out) I just puked at work. Real classsy, at least I made it to the men's room and no one was there.

Friday, February 24, 2006

Hmmmm

Out of hiding, let's see if anyone stops by. I have for the most part been doing ok so I have not had the need to blog about the cancer as much. I just had a scan and I am down to one small tumor in my lungs. In June of 05 I had 9 of them. There still is a some mind fuck going on but not as bad as it was. Also, there is that whole thing with the work woman who hates me. That had a ring to it, doesn't it? She wants nothing to do with me, I was how I was, I don't think it warrants her behavior but who the fuck am I to judge anything. I know someone who keeps trying to be in contact with me who I really don't wish to continue the friendship with for a variety of reasons that are not really that important so I won't go into it here. I finally get it I think, so that is/was a big thing for me to realize. Now there is another one who is putting up boundaries which is fine. I need to be aware of these more often and sooner I see. I tend to blab too much to everybody and not everybody is interested.

Tuesday, February 07, 2006

Been a while

I haven't posted in a while, things have been pretty good. I'm not very good today though. I had two big glasses of wine before plus a few percocets. I have a scan coming up at the end of the week and I'm pretty nervous about it. I always get nervous with them, it's a gauge as to how I'm doing so it makes sense. I really feel like I"m pissing off people lately though and I'm also getting too involved with people and what is going on in their lives. I should back off. My SIL is having a breakdown of sorts and while I want to be supportive of her, I feel like I'm getting too involved in a not so healthy way with her. She is determined to NOT go on any drugs to control her anxiety, meanwhile she can't leave the house and has to have adults around her almost constantly. I think by going over there I am enabling her to continue her behavior. I don't get the big deal with taking medication since she needs it, but if she wants to live her live like that it's her business.
Also, I had gotten an email from someone who has some issues to say the least. She was claiming to want closure for herself which basically meant her listing a bunch of people and telling me what is wrong with them. She laid into me too again, I helped her out when she was in the dumps. If I only knew then...anyway, I read her email and deleted it and really put it out of my mind. I will not write her again. I'm done. I hope she gets her life together (or not) I really don't give a fuck at this point. I also find that I'm giving a shit what other people do and who they visit on the blogs and I shouldn't care. It's not my life. I don't even know these people. They can do whatever they want and that's ok, they don't need me to do anything for them. I think since I'm in such a state of being fucked up, I try to find people I can help so it takes my mind off of my shit. Maybe, maybe not, I really don't know. There are a bunch of people I work with who don't seem to want anything to do with me. It could be my imagination (or not). I just want to try to do things that are going to please me. I need to take care of me.
This sucks, I'm getting tired of it. I'll probably get good news next week and all of this will seem silly for another 2 months until I go for my next scan, then I will repeat this again. I'm so fucking predictable.

Sunday, January 29, 2006

Walking Away From a Plane Crash

This week I survived a massive restructuring at work. I can't help but feel like there was a massive plane crash where over 100 people died and only 7 walked away alive. I was one of those 7. About 30 people from my group were affected, most were offered a choice of moving to Boston, or riding out the work until the end of the year. They made the stay till the end offer very tempting for people. I do feel some guilt over what happened. I have been working here for about 4 1/2 years. I had been a temp for 3 years and when they found out I had cancer, they were very suportive. I had your basic HMO plan so I was getting most of my treatments for cancer paid for, but I was not allowed to go to SK. They were out of my network. Then, 10 days before I was to be operated on, the company put me on staff so I could have better medical and could go to SK. I feel that without that chance I would not be doing as well as I am now. I know of someone who had his surgery at a different facility and his results were not as good as mine have been. So now I get back to the title of this post. I was told officially that because of my skill set I am being offered a choice to stay here. I know that it may be part of the story, it's not all of it. So many folks were only given the choice of Boston or no job. I know that there are going to be some people that will look at me like I got special treatment and maybe I did. I'll trade places with any of them, they can have some cancer and I'll find another job or move to Bosotn. it's not like going to Alaska. But I do feel some guilt about the whole thing, I know I'll get over it. I'll be curious to see what happens when the dust settles in a few months.

So I've been neglecting this blog and that is good. To me it seems like I am handling my situation much better than I used to. I do think the fact that I ahve my diet and the constipation thing under control somewhat is making a BIG difference. I went from 4 days of REAL BAD PAIN to 1-2 days of minor pain. So I guess that's it for now, I still have the toe thing going on but overall, I'm doing well, it's two years next month...

Wednesday, January 04, 2006

What Else?

So I went for a double dose of chemo today, that's the best part of my fucking day. My toe has been all sore and fucked up so I had them look at it. They sent me to the 10th floor to the Dermatologist. Her assistant looked at it, then the Dr came in. She proceeded to take some surgical scissors and start to cut the top right side of the nail off. No anesthesia, no foreplay, nothing. It hurt so fucking much. Then they start to prod it with giant q-tips and put silver nitrate on it. I thought I was going to hit the roof. It is starting to feel a bit better. Then I get the chemo, always fun, I'll cramp up tomorrow and that will suck big time. then my iwfe calls me afer I finally get home to tell me she hit a fucking deer with the van. Let's see, last year she had 4 accidents in Nov/Dec that cost us about $5000. She said the front of the van is all messed up, I'm sure that will be another $2000 at least. She is a shitty driver, she takes herself off her medication, doesn't deal with her issues with a shrink, can't cook and I'm not even getting laid at all.
FUCK IT, I've so had it with everything

Tuesday, January 03, 2006

My Left Toe

Well here's my fucking toe now. I bumped it slightly and it start to fucking bleed. I want to open this blog up real bad, I'm scared to death and I feel I can't tell anyone. I dread going into the city for another chemo, I hate it so much and I have a year to go at best, not to mention all of this foot crap. MOTHERFUCKER

Alrighty

So after having an extra two days off from chemo, I go back tomorrow for round #49. My fucking toe is really bothering me a lot and that is why I got the time off. I have to wear sandels now so my feet don't get all squished all day and it seems to help a little. so I wonder how long I will be at the office tomorrow. I feel strange since I told the one nurse that I thought she was great and she is my favorite. Now she backs away from me. I do that a lot it seems to women. She must see this a lot though and is wise to us cancer guys. A coworker of mine wants to go in with me when I get chemo sometime and make a day of it. She even offered to drive in with me at 6 am. I know her intentions are good and we would make a day of it but I feel funny because I really do like her a lot and if things went a certain way, I'd get in trouble I'm sure. This is my fucking life story lately. I'm distant from my wife and her from me, I want to sleep with practially every woman I see and look out if I start to know you, it gets even worse. I wonder is this is who I became, or is this who I always was. I know it's who I am now so that's the point I guess. I wonder if this is normal for cancer. I've fallen in love at least 10 times in the past 2 years. It sucks and it's great. Mostly it sucks because it not mutual or satisfied or right. I'm very fucked up I think

My Daily Routine

This is pretty much what I have every morning now. I take some vitamins (EFA, E, A&D and Selenium) plus Zoloft, Xanax, some stuff to keep my feet from swelling, magnesium, and some other shit that I'm too tired to go upstairs and look at the labels to find out. I also started making fresh juice every morning. I'm hoping that the mix will help promote health plus help with the constipation issues I have.