Sunday, April 30, 2006

Coming Along

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

Saturday, April 29, 2006

Post-Op


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


Friday, April 28, 2006

Butt Friday

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

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

Thursday, April 27, 2006

Tubes Out

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

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

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

Wednesday, April 26, 2006

Wednesday


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

Tuesday, April 25, 2006

Still kickin'

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

Monday, April 24, 2006

Show Time,,,

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

Sunday, April 23, 2006

Show Time...

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

Friday, April 21, 2006

A Few Days Left Before Surgery


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

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


Thursday, April 20, 2006

A Few Days Left...

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

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

Wednesday, April 19, 2006

Surgery Again

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

Wednesday, April 12, 2006

PET scan to come

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

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

Thursday, April 06, 2006

Wait...

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

Wednesday, April 05, 2006

# 61 and a CT Scan

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

Monday, March 27, 2006

# 60

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

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

Saturday, March 25, 2006

Saturday

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

Friday, March 24, 2006

The New Normal? I Hope Not

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

Monday, March 20, 2006

New Staff...

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

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

Monday, March 13, 2006

I'm a Little Pissed

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