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.

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.

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...

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.

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....