# 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

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.

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....

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.

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...

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.

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.

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.

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...

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

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.

How to not Get Cramps

I may have found something that limits the ammount of cramps I get after the chemo. I found if I take 2 senokote when I get home, plus eat the gerber baby prune stuff and take gas-ex and the belladonna, it seems to limit my cramps. I also ate less and drank more water. I'll try it again and see how it works. That's if I have a treatment Monday. My toes are getting all fucked up and they may stop treatments for a week so I can go on antibiotics again for a week.

The Plan for the New Year

So Christmas has come and gone. I was so excited to post tonight, but I called someone and lost my drive to do so. Well I wanted to post about some of the new side effects I'm having. This is my big toe, this is my big toe on Erbitux. It's getting rather fucked up. It's sore as shit and it's bumming me out. I'm trying to find things that can help it but I'm not having a lot of luck. I guess staying off it would help. I want this year to be a turnaround year for me. I feel like I'm stuck in my rut again. After I was first diagnosed, I had a good attitude. I felt lucky to be alive and savored every day. Then I hit bottom and got depressed. I drank too much and didn't give a shit about anything. I was doing my chemo, kayaking every friggin day and just waiting for the operation. I didn't even think ahead of that. Nothing about recovering from it or anything. Little did I know that the post-op stuff was going to be that difficult. Well it was and I'm still not right. I feel very lost spiritually and I don't know what to do. I know I need to find something and I feel that this is the year for me. I want to turn things around and get them to where I was after I was first diagnosed, not even where I was before cancer because that was not a very good spot either. So that is one of my plans for this year. I would like to check out a church up by me but there is the one in NJ that I'm comfortable with. My biggest fear is that I'm going to become religious. I don't know why I fear that, but I do. I think I don't want to become preachey. Let me stop for now and try to finish this post later

WTF is going on???

I don't even remember where I left off. I'm having some major aniexity attacks today. I just feel so overwhelmed with everything. I can't stop obsessing with my reality that I will most likely be doing the same chemo for another year at best. That will bring me to around the three year mark for chemo/cancer. HOLY FUCK!
I'm feeling so lost spiritually too. I really never felt spiritually connected in my whole life. I was raised a catholic and went through 8 years of grammar school only to dump it all in high school. I smoked way too much pot. I didn't know how to cope and didn't want to try. So why am I bringing this up now??? Who knows. I've connected with a school friend who I haven't talked to in 30 years. She has cancer too. I asked her how she deals with it and she prays. I have such a hard time praying. Even when I was in the hospital for over two fucking weeks, I hardly said a prayer. Why have I lost this or is it I never ever had it. I think that is more of the case. My homelife wasn't the worst, but it wasn't the best either. I never felt close to God or any higher power. Now my wife is saying I should go to NA or something. I don't really think that is my problem, I see a shrink, I'll have to ask her I guess. I do know that something is lacking. For about six months after I was first diagnosed, I had a isn't life great attitude. Then I nosedived and lost control, I had the whole thing with Kristan, was drinking too much, felt lost and hopeless. Then the surgery took what was left out of me and the recovery has really sucked. It's a long fucking road and I'm getting tired of it. I know, shitty attitude.
fuck me...

Feeling Stupid

I think I may be over the worst part of the cramping from the chemo, but I feel like my brain is jello. I can't think straight at all and I'm at work just trying to do simple tasks and I find I just stare at the screen. I feel very useless at this point. It's like I'm here physically, but not here mentally at all. I'm sort of scared stiff I think. Maybe it's just an anxiety attack? I'm overwhelmed with Christmas coming and not all of the gifts gotten, we are in a financial hole, my health is improving, but it's coming up on two years since being diagnosed with cancer. I can't fucking believe it. I can't remember my life before cancer it seems. I was crying beore work again too. We had a small Christmas party today but I didn't feel comfortable at all in there. I jsut want to get the hell out of here and go to bed. I miss how I used to be

I'm Hiding

All I can say right now is that CANCER REALLY SUCKS. I'm cramping pretty bad, but I may be on to a new formula to speed up the side effects of the cramps. I'll see if it works. I saw my therapist today and actually started to cry a little. I think I cried more in the bathroom at work though, that's a first (maybe a second) I also hugged my therapist (who is a woman) It was partly a Merry Christmas thing but also a I need a hug thing too. Yeah, I guess I broke one of the cardinal rules of psychotherapy. I should see a shrink about it I guess, HA

# 47

I went in for # 47 today. I had missed one week because I have been having some foot problems, so I was on an antibiotic for a week and they cut me some slack. I don't know if it was a good thing or a bad thing. Having that week off just made me realize even more how much I can't stand this whole thing and there ain't nothing I can do about it. Not to mention that even the best case scenario is that I do another 4 months of the treatments and the tumors disappear, then just to make sure they are gone, my Oncologist would keep me on for another 6 months. Which means that under the most favorable circumstances, I'm looking at close to a year of this (that's if they disappear afer 4 months - no guarantee they will) which sucks. I know I shouldn't look ahead and take one step at a time and all of that, great advice, I wish I could be saying those words to someone instead of hearing them said to me. As much as I like blogging I am beginning to wonder if this chemo blog should go underground or not. I know too many of you now and it makes me uncomfortable to be bitching to you or however you want to look at it. I know you're all very supportive and all of that, and I guess part of why I started this was to get sympathy or support or something. I know part of it was to be able to share some of what I am going through but trust me, it's different when it's people you don't know at all, then it becomes people you still don't know at all but they kind of know you and you kind of know them. (You Blogger Folks) I edit myself all of the time now when I never would do that and it goes against what I was trying to do I guess. I'm not asking for advice and I dont' know what I am going to do about it right now.

There Are Many Among Us

Several years ago I visited Classmates.com and filled out some of the info. I did not want to pay for the service so I tried to get what I could for free. Well I got an email from them for something, so I visited the site again. I saw that there were some of my classmates that I actually gave a shit about there, so I tried to see if I could email one of them. To my surprise, even though they wanted me to sign up for a Gold Membership which I did not do, it went through. Patty was a friend of mine from Catholic grammar school through High School. We did not pal around really, but I do remember (and so does she) how she kissed me in the coat room of Sister Mary Karen's classroom. It must have been quite a kiss because we both remembered it and that was 40 years ago. We grew up in a small town so everyone pretty knew everyone else. So it was great that she got my email yesterday. I told her that I'm doing well and have 2 kids etc. I didn't mention the "C" word. She wrote back saying she was fine and has 4 kids but that her brother and her sister both have cancer. Well, I wrote back and said that I didn't want to mention it at first, but I too have cancer. She replied that she too has been dealing with cancer for a few years. She has a form of skin cancer (mutiple myloma?) and is doing well with it, her brother who went to school with my brother has stage V thyroid cancer and her younger sister has stage III colon cancer. All diagnosed within 18 months of each other. It was so great to hear from Patty but I was shocked to hear what was happening in her family. We are planning on staying in touch now. I'm glad I followed my instincts that day and sent that email.

Yippee, I Passed

As most of you know by now, I passed my CT Scan. In other words, many of the tumors that were present on my July scan, are now gone, kaput, history and about 3-4 of the other ones that were a dark white color on the July scan, are now a ghostly white color which means that they are disappearing. The doctor used the words "I am very happy with the results". She doesn't throw around the words happy or very that often. I think she may have even smiled but don't let that get around, it could ruin her reputation. I have been having trouble with my toes hurting and the nails getting all sore so her nurse told me to take my shoes and socks off and wait for the Doc because she doesn't have time to waste. Some I'm in the examination room with my Brother and we're waiting for her. The next thing you know is her nurse tells us to go into her office because she had the scans up on her computer side by side for comparison. So I'm in there in my bare feet just standing on her carpet in the office of one of the world's top oncologists. I just found that funny. Since there is a possiblilty of getting a foot infection, she put me on an antobiotic for a week and I get to take a week off from the chemo. Whooppeeee! I had also asked her about what can be done to help my fingers stop splitting. She said that many patients are using Crazy Glue to mend them. I'm not sure about that one....
I'm sure I'll have something to bitch about this week. Thanks everyone for your email comments. I don't expect you to post here too unless you want to, I won't stop you.

One Day to Go

Thanks everyone who has commented. I woke up today with a slight Percocet hangover. I went to bed at around 2 am (again)then I got up at 6:30 with Dana, she was playing at a church this morning, and made coffee then went back to bed until 9:30. My feet are killing me again. Now I know why I took so many percocets last night. Right away the kids are at me to go to their cousins who live up the street. I don't mind them going but I need to wake up and snap out of this. Dylan gets such a snotty attitude at times, I want to smack him. I've never hit them (except I smacked Dylan on the ass when he was about 3-4 because he slammed me in the arm with a baseball bat, it was a reflex and I didn't hurt him) but sometimes I want to, or just pick him up and screem in his face. I know that's not how to parent and I won't do that, but that's how I feel. Call DYFUS I guess. Anyway, I just feel a lot of pain in the old footsies that I'll probably have to medicate the fuck out of me again, not to mention that I'm getting antsy about tomorrow. I will go into work for a few hours to distract myself and to work, but there is this whole issue with the boss being hard to understand with what he expects us to do. He's going on vacation and he dumped this project on my co-worker and my laps. He gives up shitty directions and looks at us like we're from fucking Mars when we ask questions. My co-worker is ready to get off of the team and I can't say I blame her, but I hope she doesn't for my own selfish reasons. so I guess I don't know what to fucking complain about at all. Part of me just wants to go apeshit and scream my head off or do a video blog of me freaking out. That would be fun I bet.
On a lighter note....I did just register a new domain name www.phillieg.net and I may move my blogs there. I did it because it's cheap for one, and I want to be able to but vieos and songs there and not have to worry about other servers and shit like that. Also I want to use it to try working on a database and other stuff. Well, I don't feel tons better, but I don't feel any worse. I've got bills to pay

Waiting for Results

I thought I'd try going back to a typed post instead of the videos. I know some of you can't see them due to platform issues, connection speed or whatever.
I had my followup CT scan on Thursday, 12/8 and I'll get my results on Monday afternoon. Normally I would see my Onc in the morning but she is getting ready to go on vacation so everyone wants a piece of her next week. I'm expecting more good news which means to me that the tumors in my lungs are still shrinking (maybe some will be gone) and there is nothing happening in my liver. What also comes with the good news is that I will have to endure yet another 8 weeks of treatments which means more stomach cramps, which are getting to the impossible to deal with stage, along with more skin rashes and splitting fingertips. Oh, and yes, I have a new one now. My toes are splitting just like my fingers are. This really sucks because I have to jam them into shoes everyday, it hurts just putting socks on. So I want to compile a list of concerns/complaints for my Onc for Monday. I also want to see what dietary things I can do to help lessen the side effects. I hope to meet with or set up an appointment with a dietician. So after this fourth possible round of chemo, it will be 2 years since my diagnosis. Does that make me a 2 year survivor?

This Round is Over

	If the movie doesn't play, you can try this link or right click it and save to the desktop. Looking at the Three of these that I did this week, I realize that this is an interesting way to let everyone know what is going on for one, these have all been done on the first take with no editing or script (I know, they seem seamless) and I also realize that I started each of these off with "Hey"

One Year Ago

	If the movie doesn't play, you can try this link or right click it and save to the desktop. Don't freak out people, I'm ok. This is normal for me every other week.

Chemo # 45 - The Movie

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

Blah

Here it is the day after Thanksgiving. I have a lot to be thankful for with having good friends and family and for being around another year. I think I'll have many more but you never know when the cancer will come back, and I have to get rid of it first. I've really been feeling blah as of late. I don't quite know what the deal is. Work has been ok although my boss has been setting me up (unintentionally I think) so I look stupid in meetings. I have to talk to him about that. And there is still that tension with certain people there. Home life is ok, the usual. Not enough time together, the kids are at us, my fingers are killing me, my abdoman is still messed up, I feel like I've been kicked in the stomach a lot. I feel lost and overwhelmed I think. I don't see this feeling going away in the near future either. I don't know when it will if ever. I can't wait until I make it to the 5 year mark being cancer free. This Feb it will be 2 years since being diagnosed, but I guess that I don't start counting until I'm cancer free? I don't know..

I'm Back

Well that was a waste of time and energy. I have a lot of complaints. Mainly my fucking fingers hurt and it's hard to type.

Another Shitty day

Today started out bad and got worse. My wife IM'd me like we often do in the morning, and she didn't ask me how I was feeling. It bothered me a bit because she often gets wrapped up in her own stuff. That's not a crime and I'm not too shocked. Then I had to get ready for a meeting, so I talked to my boss about what issues if any had to be dealt with. I asked specific questions and got what I thought were specific answers. Once again, I looked stupid because the issues that I brought up were already known to the people who were involved with them. i also had to directly address the woman who hates me about something and I was blown off and made to look stupid. I have to talk with the boss and the manager about this. I can look stupid by myself. I took a percocet and feel better now....

Dermatological Nightmare

Here's some nice photos of what is happening lately to my body. The one on the left is my calf. Normally my calf muscle is well defined (not to brag, but I have nice legs, not chicken legs). Now my calves are swollen and the rash is on them too as well as my thighs. Not only does it itch, but it also burns and if I bend down, they almost feel like they are going to explode. This is something new, I am getting this checked out today by the nurse. The other lovely photo is of my right hand. It really does not do it justice, but my fingertips are all getting split and cracked. This seems to run in cycles where I'll have a bad week or so, then it gets somewhat better. It sucks because I love to play my guitar, but it's hard to play with bleeding fingers. I guess the 'good' news is that because of all of the pain I have with the cramps from the CPT11, I was able to get some percocet. They don't help with the cramps, but I don't mind as much.

Ok, this just in. Because of my legs and stomach being swollen, my Onc ordered a sonogram of my abdomen. I found out two good things. One is that there are no blood clots in the liver (which was a concern) and two, I am having a girl!
This sucks, I wish I was OUT OF HERE!

More Bad News

I don't want this to be about bad news all of the time, but this really sucks. A friend of Dana's from high school, Sigrid, her daughter had been battling brain cancer for about 5 years. She is only 11. She died the other day. Dana is going to be playing at a memorial service on Sunday. Hug your kids if you have them.

Great American Smokeout

I'm sure this is no surprise coming from me to all of you. I used to smoke, my cancer is not related to smoking (I think, I have colon cancer and I never stuck a butt in my butt). In case people are not aware of this, CANCER SUCKS. If you smoke, as I know some of you do, please try to quit even if it's only for one day. I am such a weak-willed person, I thought I'd never quit. that was 16 years ago. I did it with hypnosis. Here's a link with some info. Lecture over

Why Do So Many People Suck?

I work with a guy, I really don't know him well, but he seems like a friendly guy, rather quiet. I have not seen him in two weeks and I figured he took some time off. I found out that he was leaving a party at his cousins two weeks ago and was robbed and severly beaten. He was in a coma for over a week. He has fucking heel marks on his head from where he was stomped on. Lately too, I've been seeing a lot of stomping on people in the Blog world. People seem to think that everyone and everything is fair game. There's a thin line between busting chops and just harassing people and being downright mean. I think it really sucks, people either don't put themselves in other people's shoes enough, or they are just mean people who don't give a fuck. I'm probably just very naive or too chemo'd out, I feel like what you see is what you get with me, but others appear to be one thing, then you see they are something else. This applies to the real world too, not just here. This shouldn't be a news flash for me, but it is. Maybe I'm just losing my desire to do this blogging stuff or I may just go underground with this one.
-whatever

Lost a Friend

I worked with a woman who I became friends with over the time I worked where I work. I would always say hello to her and she would say hello to me too. I knew she had some form of cancer because of her wigs she wore or her real short hair. I never asked her what she had or anything and I just treated her like a regular person like she was. In Feb 04, I was first diagnosed with cancer. I found her to be very aproachable as someone I could talk to and find out some information. I think she had some kind of ovarian cancer, but I really cant' remember now. She had gone through numerous treatments, but they would work for a while, then stop working. About 4-5 months ago she started a new treatment that I think knocked her for a loop. I always kept an eye open for her but she didn't return to work. She lost her battle last night. I'll miss her...

Sunday

I was/am having a real shitty day. I feel like everyone's at me today. I took a ride in the kayak and it helped a bit. Here's some pictures. If I look pissed and confused, I capture the real me then.

Here's a horrible picture of me, but that's me now, rash and all. Man, I look like Frankenstein with the kayak coming out of my neck like bolts









My Ride












This was at the other end of the lake,
if I go straight ahead, I'll be back by home









My Ride









Walton Lake from earth.google.com

I'm Done!

Ok, this is my easy week as far as the chemo goes. But today, I ran in to that woman I work with who hates me and I said Hi, and she blatantly ignored me. So now I really get it, it's her fucking problem. She doesn't exist anymore in my world.
She can't even be civil.
I can be cured of the cancer, she'll always be a jerk.

~ no comments allowed on this puppy

Almost Through It

I have been getting this one drug, CPT11, since October of last year. It's the one that causes all of the cramping. I've had 25 rounds of it so far out of the 42 total chemo's I've done.
That freaks me out! I still have at least 3 more cycles of that over the next 7 weeks then I find out how much more I have to do.
Anyway, enough of the pity-party.
I did just get a new prescription from my MD.

Here we go again

Like a swiss timepiece, the fucking stomach cramps begain again. Just 2-3 days of intense pain, then moderate pain for another few days. Plus I feel like I'm losing my mind (again)

Third Cycle - Number 41

Tomorrow marks the beginning of my third cycle of my current chemo cocktail. It will be number 17 of the CPT11 and Erbitux and my 41st overall. I'm scheduled for 8 weeks of weekly treatments, then a CT scan etc. This will take me to around Christmas, It was a pretty wild week with finding out my good news, which is real good, even though it's not over by any means. Work was good too. Some friends took me to lunch as a belated birthday and a good news cancer celebration, I had told a friend that if the news was not good, it could be like a last supper. On Friday, me and a friend took this guy out who just found another job. He's been a big supporter of mine since the beginning. His sister and Mom both have battled cancer and won, his sister with pancreatic cancer which isn't an easy one to beat. Plus this guy, who I shall call Mike and my friend, who I shall call Gail, both came to visit me in the hospital last year. Mike is also going to be a doner for some guy in his early 40's who has multiple myloma and needs a bone marrow transplant. Mike was the best match out of hundreds if not thousands of people. I just think that is so cool to be able to save someone's life. It's a close second to being a woman and giving birth I imagine. anyway, it's back to the city and it's supposed to be a nice day, plus it's Halloween. Hmmmm, I wonder who my nurse will be?

Thanks Everyone

Thanks everyone for your support and comments. I had a little better news than I had expected. The flip side to all of this is that I have to go through at best, another 8 weeks of chemo hell, Maybe that's the coin on it's edge, the flip side is that it would not be working and I would waste away or have surgery. I find my mood to be cautiously optimistic at best, my wife, being happy about the news, seemed to blow this off as well, you're ok now and out of the woods. I don't quite see it that way. What I feel this means is that the chemo is still working, and we will reevaluate this in 8 weeks. Just like I've been doing for 16 weeks. I most certainly do not see this as I'm cured. It really makes me a little pissed - her attitude that is. We had a fight before I went in to see the doctor. Dana feels that the doctor should be able to give me more facts about my condition. I don't see it that way. What we have here (is failure to communicate - ooopps, wrong movie) is the fact that I am on new protocols for colon cancer. If this was 5 years ago, I'd be dead. The data that is out there now on the internet, which by the way is not good or accurate (the 5 year survival for Stage IV is rare at best) stinks. I am part of the group of people that is creating the next bunch of data and survival statistics. I was talking to my brother about this and he said 'if Dana wants definate answers, then my Doctor could treat me with the drugs that were available 5 years ago. Then we'd know how long I'd live'. I'm trying to ride the crest of the wave in to the shore. I don't want it to collapse on me and drown me or have it pass me by. I want to stay right on top of the technology. If I can last 3 years, they may have new drugs that will keep me alive longer. I can see that this is hard on her too, but I think that I don't play this up so I make it seem like it's not as bad as it really is. Now, this is all strange because people I know (sort of ) read this plus my other blog so I must look like a nut job a lot. I have been finding that I am editing myself on this one which I never did before. So, that's where I'm at right now. I am glad that the past 16 weeks have been for something and that I'm getting 'better'. I'm not looking forward to the chemo, the rash, the hair falling out, the cramps, the manic behavior. Part of me is pissed because last night, I have no friggin knife at the table. I think she's just out to drive me insane sometimes. And...every night she leaves her eyeglasses in her van. Every night when she goes out to get them, she leaves the dome light on. Everynight, I have to go out right after her and shut it off. WTF? I guess I'm feeling better....

The Results are In, We Have a Winner

Things are going well. Continued shrinking of the tumors, 2 of them are barely visible. My CEA (cancer marker in my blood) went from 6.3 in june, to 5.6 in August, to 1.7 now.I'm staying on the Chemo for at least another 8 weeks, they we'll see what's up then.
film at 11 ;-)

Kayak Ride

For those of you playing at home, you know I have been having a rather rough week or two. I feel like the next page in my life is about to turn on Monday. I will be finding out how well the chemo has been doing with shrinking the tumors I have in my lungs from my primary cancer, which was Stage IV colon cancer. The last 2 CT scans I had showed that the liver is still clear which is a very good thing. Also, the last CT scan I had showed that the chemo I was getting for the first 8 weeks has been effective, the tumors shrunk significantly, adn I have reason to hope that the next 8 weeks of chemo I did will have the same results. I did like it better when I just had to worry about being crushed in my car on the way to work like a normal person worries (oh, you guys don't worry about that?) but cancer makes you more aware of the fact that we all are going to die at some point. I think I'd rather not know when and just be surprised. Anyway, after a very tough day (emotionally) which I was lucky to have friends like all you regular visitors, I saw the sun was setting and the sky was beautiful and since I knew rain was in the forecast, I decided to strink while the iron was hot, and go for a kayak ride to soak in the beauty of New York State in the Autumn. I was able to get Dana and Griffin to go with me too. As you may see, Dana has a winter coat on. I had only shorts and a tee shirt on (as usual) but that is a topic for my other blog on another day. I hope you enjoy the pictures as much as I enjoyed the ride.

Quick Update

I had the scan, it was routine. I'll get the results Monday.
I have a lot more I want to say, but no time to say it. Busy at work

Here it is, 10:30 pm. I can set my watch to the symptoms I get from this chemo. It happens about 1 pm on Wednesdays. I start to cramp, real bad. The pills I get seem to help a little but it still makes me lose focus at work. I can't believe that I work 4 full days every week. I'm loaded up with chemo and I'm fucking working (or trying to) I think one of the worst things about the chemo is how I just want to cry a lot. The physical pain is no picnic, but the emotional stress is very tough to handle at times. I can't just take 3 days off every other week, even if I did, what would I wind up doing. I really don't want to just be home, I can't go swimming anymore, too cold. I told my older son that I was staying at my brother's tomorrow night because I am getting the scan. He asked me if I thought I'd be done with the chemo. I told him I think I'll have to do some more. I just wanted to cry. I feel so fucking alone!

On Course

Here I am, right on schedule. Two days after the double whammy chemo and I'm getting the usual stomach cramps. It does feel like I've been kicked in the gut, hard. At least I never had a problem with vomiting (except when I had the bowel obstruction which I won't revisit). I'm also having a worse time with the dry skin, my fingers on my right hand (my guitar finger picken one's) are all splitting on the tips. After 39 chemo's, I'm really kind of used to all of this. It beats being dead for one, and I know people who are much worse off than I am. I'm a little nervous about what lies in store for me. I'll know next Monday after my scan this week. I think it's more of the same...I can deal with that.

How Do You Lead Your Life?

I was asked a great question today by a friend of mine. They asked me if I lived my life like Jesus and if so, is it a conscious choice. I really never thought much about it. I went through 8 years of Catholic School, my parents thoguht they were doing the right thing even though they were not very relgious or spiritual people. I'm not a member of any religious organization and have not been for most all of my adult life. That's neither here, nor there, I just thought I'd throw that in so you would have some sort of barometer as to my sprituality. I replied by saying something like I try to live my life in a good way and treat people with caring and respect. Having thought a little more about it, I suppose that was how people like Jesus, and Buddah, and the American Indians among others tried to live theirs. I want to treat people well and to leave things a little better than I found them.









Dylan and I about 5-6 years ago when we lived in our apartment in NJ
(photoshop treatment added)

# 39

I just had my # 39 chemo today. It wasn't too bad as far as it goes. It usually gets worse as the week progresses. They had to fill and flush my pump. There was a minor problem with it. I got into the city early, so I walked cross town to and from the hospital. On my way back I gave a homeless person $5. They looked like they needed it and weren't just going to buy booze with it. It was nice to do a RAK again.

I thought I was done with this post, but I guess I'm not. The chemo and cancer really get me very emotional at times, this being one of them. I never in my life thought I'd have to deal with something like cancer. I'm surprised with how I've risen to the challenge, and I'm so thrilled with all of the support that I have gotten, not so much from family (though it has brought us all closer together) they don't surprise me, but there are some people at work that have helped me out tremendously and continue to do so, they are such great friends that I care deeply about. They know who they are although most of them don't know I blog. And there are you people too out there in TV (blogger) land, who don't know me from Adam, but support me and are always there to talk to. My wife is also tremendous with her support 'cause I know this is not easy on her either. I'm just glad I got it and not her or the boys. Sometimes I think I got cancer because I can handle it.

Now, I'm going to make a post on my other site that you would think was written by another person...maybe it was

Too Busy

I really want to fucking scream today. I'm too busy to Blog it. I'm overwhelmed with everything. Chemo tomorrow, the shitty one. I'll probably blog while I wait. To those of you who 'held me hand' lately, thanks....

My Nurses

This week has been pretty good. I feel good healthwise, no stomach pain, just the usual post surgery stuff I've been dealing with for over a year. Well, and the itchy rash from the chemo and I'm losing more hair but I still have more than many guys my age and certainly more than many cancer peeps so I can't complain. I had a lot of fun blogging too this week. There are a lot of great people out there that I've gotten to know. Now, I've spoken about my Oncologist before. She is so smart, so talented so not warm and fuzzy. I'm not paying for warm and fuzzy. The nurses on the other hand are all the most wonderful group of people I have ever met. I can't even begin to tell you how many crushes I've had. It really takes a special kind of person to be a nurse for cancer people I think. I've always felt like they really care about me and have done whatever they can to make me comfortable during treatments. I've had the pleasure of sort of rotating between two of them and it's been as fun as chemo can be. One is Bridget, who I don't have a picture of and the other is Stacy.



















There is also this strange nurse who wants to take my temperature (the hard way)

Chemo Caps

Well, this has not happened yet, but I can see it coming down the pike. I seem to be losing hair at a faster rate then before. Now I know this is the era of 'Bald is Cool', but I'm not sure if 'Bald is Cool with a rash on the noggin'. This chemo is a dermatological nightmare with the rash and itchyness. So I thought why not check out what is available for me when/if I need to get a doo-rag. The internet is amazing becaouse you can type in just about anything to search on and you will find it. There are probably fried hamster turds out there. I'm way too busy to search, maybe later

Choice # 1 - The Yin-Yan doo-rag
Not too bad, kind of cosmic. People might confuse me with
being a ying-yang.








Choice #2 - Have a Nice Day - I don't think so,
too happy plus I don't look good in yellow







Choice #3 - Chile Peppers, hmmmm,
I've been called a hot head before.







Choice #4 - Studded Biker look.
Yes, a real conversation piece at work









Choice #5 - Bingo, the Fuck You Doo-Rag









I suppose I could go corporate and
put the company logo on it, hmmmmm

Breast Cancer Awareness Month*

October is Breast Cancer Awareness* month. To me, every month is breast awareness month, but being someone who has been affected by cancer, I am more aware of this now. Breast cancer is not something that affects only women either. I had a neighbor who was in his early 60's who developed it (he didn't even have man-breasts). The long and short of it is that cancer sucks. I realized that women aren't thrilled about having breast exams just like men aren't too keen on the ol' prostate exam, but ignoring it will not prevent you from developing cancer. So I guess my point is, if you are 'at risk' or it's time to get one, get an exam. I put a few links down here, one is for info and the other helps to fund free mamograms for women.
NBCAM Site
Fund a Mamogram site

*As a public service, if you send me a photo of your breasts,
I'd be more then happy to give them a look-sie and give my opinion.
(This is a joke although no photos will be turned away.
I may have cancer but I'm not dead)

This may not be for everyone

I found this picture either I took, or my wife took of my scars about 1 month after I got home from the hospital. The scars are still there now, although they are not as pronounced. If you care to see them, click here, if you'd rather not, I don't blame you at all. I probably shouldn't even post this but what the heck.

Did I snap out of it?

I've been in a funk the past week, it really sucked. I went to the bank today to deposit a bunch of checks we had. It's pouring out, I enjoy that. It's been way too dry around here. I brought 'The Grif' with me. I told him if he were good, he'd get a lolli-pop. Well, he was good and they didn't have any lolli-pops. Can you imagine that??? So we had to go to a drug store (for drugs) and I bought 2 bags of lolli-pops. I went back to the bank and gave them to the teller and told her it was because they were all good girls today! She was surprised. I think it may have snapped me out of this funk, at least for a while...

Old News

I was looking through old bookmarks and found this. I was on Avastin, now I'm on Erbitux. I'm not sure why I feel so drained and run down (other than that I've had 37 chemo's so far). It always feels like I've been kicked in the stomach the weeks I get the double dose. I really don't feel like being at work, I don't feel like being at home either, I don't know what I want anymore....

A Rather Shitty Week it's Been

One year ago yesterday, October 6th, I was released from Sloan Kettering after 16 days in the hospital. I was only supposed to be there for 7-10 days. I learned some patience there believe it or not after being disappointed that I would not be leaving on time. Now when someone asks me how much longer I'm on chemo or anything I just say I don't know, because I don't, and they don't either. When I got home that day, I puked my guts out. It was good to be home though.
Lately I'm noticing that my eyebrows and my hair on my head is thinning a lot. I guess I've been lucky that it's lasted this long (37 chemo's) MF'r!

What did I tell ya!

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

Here ya go

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

Crazy Again

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

FUCK

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

Pictures from NYC

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

Lincoln Center









Fountain at Lincoln Center












Building in front of Lincoln Center










Time Warner Building












Time Warner Building












Scultpture by Julliard - yes Lincoln Center again









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

RAK

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

Back to My New Normal - Fucking Nuts

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

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

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

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

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

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

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

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

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

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

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

09.27.05 SK Revisited

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

#36 Done

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

Loose Lips...

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

Wednesday...

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

The Day I was De-Livered

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

Another Blood Test

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

I Finally Pulled the Cancer Card

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

Saturday - one more day to go...

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

This and That, That and This

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

Trying to Mend Fences

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

What I'm Reading *

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













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

A Cure for the Side Effects

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

#34 Done

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

This Weekend

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

What did you have for breakfast today?

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

I Miscounted, it's been 33 chemo's

Friday - Feel like shit

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

I Think I'm Done for a While

It's not working anymore...

Clearing The Aire - Internet Paranoia

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

Here we go again...Round #31

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

Sometimes a Joke is Just A Joke...

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

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

Happy Weekend

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

Christ, Chemo #31 starts Tuesday....

The end is near...

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