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.

Oh Happy Day

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

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

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).

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...

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

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

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!!!

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.

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

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

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...

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

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

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.

# 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...

# 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

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.