Update

So here it is, almost 12 years since my dx. I've been in treatment for the entire time with the exception of a few short breaks. I basically stopped blogging when FaceBook became popular (2008?) but I didn't really post on FB much about cancer. There's a certain anonymity with blogger that one doesn't have with FB. When dealing with heavier topics like health issues I think it's better to remain somewhat anonymous.
So things haven't changed too much over the past 3 years. My treatments been the same. Xeloda and Avastin, 7 days on, 7 days off. One great thing that's happened over this period is that I got very involved in local politics and have played an important role in getting two bums off our town board. The supervisor is still there but he's basically been neutered. He's a real piece of shit.
:-)

Almost 11 Years...

I am not sure what to say. When I was diagnosed in Feb 2004 I was given 6 months to live. I've had numerous surgeries and have been in what's become a marathon chemo treatment. I've yet to reach NED (No Evidence of Disease) nor have I reached DEAD (no explanation needed)

Another Battle

A good friend of mine once said "Phil's always fighting something" which I take as a compliment. I've been living with Stage IV colon cancer for over 10 years. Not bad considering I was given the 6 months to live speech by my first oncologist. He didn't even last 6 days as my doctor!

One of many positive things that I've discovered that cancer provides is an attitude that things I might have put up with in the past, I no longer put up with. I was fortunate to attend a rally in November  of 2012 after the town board where I live (Monroe NY) did one of the most irresponsible things I've ever seen. The went behind closed doors at a town board meeting and purchased a former movie theater in town for $880,000 without any public input at all. They claimed that the purchase was to consolidate their town offices which were not, and still aren't, ADA compliant. Once they heard the outcry of the citizens in Monroe, they back pedaled and said they were going to open it as a movie theater. Well, the LAW says they would not be able to show first run movies. If I want to see Gone With the Wind I can see it at home.

Photos

New Year, New Approach?

I've been at this since February 2004. I can't believe it half the time. It's been a very rough road at times with the operations and RFAs - 10 in total, and the 280 or so chemo treatments. While I feel I owe my survival so much so my oncologist and her team, I am beginning to realize that this approach will only take me so far with getting "cured". I am seriously thinking of making changes to my diet in order to get over that last hurdle to becoming cancer-free. While there certainly is no guarantee that diet will do it, I don't really see how making healthy choices could harm me either. I've never done anthing like this before and I know that making changes like this can be very hard. I have to remember that I need to do this in small steps. I'm also wondering if by re-starting this blog I will be able to stay on track. My goal is to remove excess sugar and processed foods from my diet as well as dropping about 40 pounds.

Too ambitious? I hope not...

Update

It's been a VERY long time inched I've posted here. I think it just got to be too intense for me. So I am still here. I'm still dealing with stage IV colon cancer but it's become more manageable for the past two years. I have had 4 RFAs, one per year on average with the last one on October 17th of this year. I'm still taking chemo but for the past few years it's been more of a targeted chemo. Still, it can knock me out for a while. I have done in the area of 270 treatments since Feb 2004. I stay very active on a few cancer survivor sites. I've even had a profile done on me by the ACS in their Stories of Hope section. I also helped another site, WhatNext.com, with beta testing of their site being that I have a background in computers, website development, and a background with cancer!
Here are some links...
WhatNext.com Profile
ACS Stories of Hope
NY Times article on Gilda's Club
AP Article on the High Cost of Cancer Drugs.

I haven't been around much. Well, I've been around but not blogging or commenting much. If anything I've been posting more photos on Flickr and a few videos on video.google.com.
So, I don't want to make a dumb statement like I'm not blogging any more but it seems to have slowed down for me and for many other folks I'm seeing. I've been at this since 2005. Wow, that's a lot of talking to people I don't know when you think about it.

So this really sucks. I am finding it rough to face my reality. I figured that I would go back on chemo

The scan results

In addition to the one tumor that I have that has grown in size, I also have a small cluster of nodules (tumors) I am going back on chemo for about 2 months then most likely having an operation. Here's a good reply I got from someone I met through a cancer support site. A good reality check. It could be worse, much worse but this still sucks because I don't think I will ever get off of chemo. Every time I do I grow more tumors... I am starting already with the skin stuff in only 1 week of being back on chemo

Phil, I know how awful surgeries can be.. but at least you can still have surgery.
I am no longer have surgical options. Consider yourself fortunate. :)
See, now don't you feel better?
Hope you tolerate chemo OK.
~Jana

Like I'm Not Fucked Up Enough....

Here's another problem of mine. It's old news to those who (think) they know me. I like to think it's cancer related, but I don't even know anymore.

Ukulele Gently Weeps

Jake Shimabukuro performs his version of While My Guitar Gently Weeps by George Harrison using a ukulele.

Blahg

So here I am on my 2 month chemo break and I am not having the fun I hoped for. I'm a mess emotionally and often physically. I switch between getting hives on my arms and legs for no apparent reason that I can figure out and throwing up every morning because of a buildup of phlegm. I am also starting to get into my clingy stage with people I only know online. I've been there, done that and the friendships usually end up in the can. I don't know why I do it other than I feel the anonymity provides a safe haven for me to say things I normally might not say to someone. The thing is too that all of the people are really nice people (or that is how things seem and I think they are nice so I don't think I pretend they are nice) I tend to go full steam ahead and email them 40+ times a day. Sometimes I think it's in part a way of dealing (or not dealing) with feelings from Dana's actions in the past. I'll have an emotional relationship with someone (my interpretation, probably not theirs) and since it's not in the real world it's OK.

I like to think it's a by product of my cancer and the meds... who the fuck knows.
I go for a CT scan on the 29th of this month and then get the results on Feb 4th (?) Of course I'm getting terrified. The outcomes are like this:

• scan looks good, no change in tumor. Get another 2 months off
• scan looks not so good, tumor is larger. RFA (ablation) procedure done
• scan looks not good, multiple tumors. Operation
• scan looks the same, go back on weekly chemo

I'm surprised I put the one I put first, first. It's my most hopeful one but I don't think it's the one I'm gonna get...

that's it for now. Should I turn off comments? People visit but don't comment

A Much Needed Break

I just had a scan and I still have that tumor in my right lung. The good news is that is hasn't changed in size, if anything it got a tiny bit smaller. I'm so feed up with treatments and the side effects that my Onc gave me 2 months off of chemo. It's going to take another week or two to purge the poisons out of my system but I am finally feeling that my fingers are healing and some of the skin issues are getting better. The mind fuck is still going on. I think that when I start up with chemo I will seek some counseling at SK. I do see a therapist who is wonderful and has been very helpful with the cancer at times and other issues. I do feel that Dana does not often understand what it is that I am going through at all. She tries to get it but she does not. It frustrates the hell out of both of us I guess to be fair to her. I really just want to bitch about how "my wife doesn't understand me" but I don't understand me either. Well this is certainly taking a different direction than I originally planned. I do see from the old site meter that there are a few people who visit. I know one is TuxBaby (Hi Tux :-) and the other is a WebTV person who I'm not sure who it is.

So what I had wanted to say is how I really need to start to handle my life better and find a better lifestyle for dealing with the cancer. I need to meditate, not medicate. This is getting close to 4 years now. My new normal is a hard one to accept. I am lucky in some ways, I certainly could be dead and I'm not. My quality of life could be much worse. I am in constant pain/discomfort though, I wish I wasn't but between surgical scars and chemo side effects it's the way it is. Well, it's snowing/sleeting/raining/hailing outside. I just saw a car flipped over.

What a fucking life at times....

Long Time, No Post

So it's been a very long time since I posted here, 4 months about. Things are status quo. I have noticed that I have a reader from WebTV who does not comment but visits a lot. I'm not sure who this is. Feel free to comment or not comment. I'm sitting here waiting for my meds to be ready, this is usually done by 9-9:30. Here it is 11:11 am and I'm not in. I'm PISSED but luckily I took some stuff to calm me down. I still have a spot on my right lung. I had one fried back in September. I had been hoping that I would have been all clear after my March operation but that was not the case. I had hoped that I'd be done with chemo by now. Again, not the case. This is a never ending situation it appears. I have to accept that I have a chronic illness that will need constant treatment. Even if I get a break, I will be back on chemo I imagine and also when I have had breaks, it seems that more shit grows and that means an operation. I'd almost rather just continue with the chemo and deal with each small tumor as they develop. At least the RFA is just an overnight stay with little or no recovery time. An operation is a two week ordeal in the hospital with a 4-6 week recovery at home. I am stitched out too I think. 4 operations so far in under 4 years, 125-130 treatments of chemo too. I'm amazed I'm still chugging away and still working. I have been trying to get back to a happy place and be accepting of my situation but it's hard. I try to play my guitar a lot and to jam with friends. Also, I try to spend more time with the kids playing ping-pong and having fun. I took Dylan to see a concert, Zappa Plays Zappa on Halloween, it was his first concert. We had a great time, I know he'll always remember me for that. I have been trying to spend more quality time with Dana too.

As far as blogging goes, it's been a drag at times. I had someone I felt I was good friends with but that friendship ended. I feel it's for the better. It was strange and strained from the get-go with issues of trust, bouts of paranoia and other oddities. I do honestly hope that they are well and are doing what they need to do, whatever that means, right? I know that I am far from perfect but I was always honest with them. I do feel blogging is a haven for nutcases, myself included at times.

An Update

Tux, you're a sweetheart for checking in on me. I have a Happy Blog too if you don't know that. Here it is.

I got my scan results, they looked good. There seemed to be nothing on the radar, this is the first time I've had scan results like that. There was talk with my Onc about maybe stopping treatment in the Fall if this trend continues. So I'm cautiously optimistic. I generally feel good, the double chemo week is still rough but I'm able to work through it and I'm enjoying life. If anything of great importance happens with regard to the cancer, I'll post it.

Love you all
-phil

A Post

I have a scan coming up in about two weeks. I feel it's a biggie because I don't know if there is anything on the radar. Since this all started, over three years ago there has always been something on the radar with my scans which always translates into another operation. So I feel that there is a possibility that maybe there is nothing on the radar and maybe I could get a break from chemo when my 6 months is up in the fall. Of course, there could be something there then I will have to deal with it as usual.

~TuxBaby, thanks for checking in on me. I'm sorry that I don't have a whole lot to say about this. I'm not finding this blog (or the other) as theraputic or fun as they used to be. I've gotten to sort of know some great people and some wackos and some in between. You seem like a very nice woman. Some people's actions (or lack there of) have really surprised me but when taken in the "big picture" of who they seem to be, their behaviour is par for the course I suppose and I'm sure they would have similar things to say about me.

Long Time, No Post

And I guess it will stay that way.
I changed my mind

I'm beyond pissed right now. I have to have another operation then do more chemo so the next 8-10 months of my life are going to be a living hell again. To top it off, my Mom is in the hospital with pneumonia as of last night and I'm battling my insurance to get my sons extensive dental work covered. He needs some major work but that needs to be done in the hospital. Dental won't cover it and the medical won't either because it's not the result of an accident. So if I were to kick the fucking teeth in of the asshole on the phone with the insurance company, he'd be covered, but if he's a little kid who needs to have to done in the hospital it's not covered.

Update

I have been neglecting this blog for a while. That's mostly good news because it usually means I'm doing well. I did have a PET scan done and it showed nothing new. So that means that my Onc is giving me off fro chemo for a few weeks. I'll have another CT scan on Feb 7th, then see her on Valentines Day. There is a very good chance that I may get another two months off if they don't see anything. If they DO see something, there's a very good chance she'll say "OK, let's operate the following week". That happened last tiem. It was kind of good because it didn't give me time to get all worked up about it and as far as operations go, it was a piece of cake compared to a colon and liver resection. So, life is good now. My holidays were great, the kids had a blast. Dana and I got to do some things and we did family things too. I hope all of you are well. Take care of your health and all of you smokers (if there are any who read my stuff) please QUIT.
x-p

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.