Number 6 of 8 tomorrow

I go into NYC tomorrow for treatment #6 of my 8 scheduled treatments. I'll get rescanned in about 2 weeks and then see how we proceed. I have always been sort of a control freak, so this cancer has been quite an awakening for me. I have absolutely no control over it except with how I deal with it, that's been fairly good under the circumstances I think. One never knows how one will react to a given situation until you find yourself in that situation. What I had mentioned last week as an idea for this weeks journey, it to document my day with photographs, so I think I will put new batteries in the old digital camera, and see what happens. The trips to the city are not all bad. Thursday's post should be interesting and entertaining.
-phil

Whoa

Back at work today, my stomach is feeling better but I am so jumpy and anxious, I can't believe it. I feel pressure to get work out which I normally have no problem with but lately I have a hard time focusing on things (work). I have to stay focused. This seems to happen outside of work too so I know it's not just a work thing...

Lemonade

My wife, my youngest son and myself were going to the organic farm we visit on the weekends today. We're not veg-heads, but we like to support the local farmers and they do have the best corn. On our way there, we passed a couple of kids who were selling lemonade. I didn't think too much of it. Then I remembered something I read one day. 'You should always stop and buy lemonade from kids ' or something like that. So 1/2 mile later, I asked everyone if they were thristy. I heard a resounding 'yes!' so I turned around and we went back and bought 3 glasses of lemonade @ .50 a glass (plus a .50 tip). It made all of our days....

My Options

When I was in SK last Wednesday, I was talking to my nurse about my treatment options. The doctor really doesn't give you a whole lot of information, mainly because they really don't know how you will react to the treatments. Cancer is a strange beast because one person could be on a certain drug protocol and it works great for them, you can be on the same one, and it doesn't work for you. Also, the protocol can kick ass for a while, then it will stop being effective. That is part of the reason, I believe, that cancer is hard to cure. If it were only a matter of taking chemo to kill the cancer cells, we could all be cured. But it ain't. So, my options seem to be these:

• Continue on the chemo until it is no longer effective
  (who knows how long that will be. I get reevaluated in 3 weeks or so)
• Have an operation when the chemo is no longer working

I feel at times like I am stuck between a rock and a hard place. I hate the chemo. I hate operations. The last two I had left me in the hospital for 16 days the first time and 12 days the second time. I lost over 40 pounds, I had a tube up my nose and into my stomach to drain my fluids because my digestive system didn't seem to want to start up again. That tube was put in a total of 4 times with the last operation in Dec 04, 3 of those times were when I was awake. Imagine trying to stick a drinking straw through a not quite ripe cantaloupe and make a 90 degree turn halfway there. I can't think of anything worse. And somehow, this last chemo has really gotten me thinking about my experiences with the hospital stays. I don't know why, but it has. I just have to take it one day at a time and one step at a time.

I feel horrible

I just want to be normal again..

I've Climbed Off the Ledge...

...I'm back in the building. Thank to the support from some truely great friends. The day is early though...

Back Home

It's almost 2 pm and I am home. I can immediately feel the chemo in my body. It makes my mouth water so much, I have to keep swallowing. My stomach is churring, my eyes keep twitching, I am sweating like crazy and am very jittery.

-Today I didn't do anything nice for anyone
and do you wanna know what?
I don't give a fuck!

New York New York, a Wonderful Town...

Okay, it's NYC day! I got up REAL early today (4:15 am) and was able to be at SK by 7 am. Hopefully it will be an early in, early out deal. By early out, I hope to be home by 2-3 pm. All I have to do is get pumped up with chemicals (chemotherapy - chemical therapy). Actually, one of the drugs is not considered chemo (Erbitux) but is actually a drug that targets a certain aspect of the cancer. If I didn't have chemo brain, I might remember what that actually means, but the point is that it does not just go in there and kill everything like most chemo does. It attacks something that is unique to the cancer. One drug I 'did' was Avastin and the thing that it did was to stop or slow down the growth of new capilaries. Tumors need blood (food) to survive. The theory is that if you can starve the tumor, it will shrink. It did do that for the spots in my liver. So there you go, Chemo 101.

The past few days have been a major period of extreme mind-fu*k for me. I can't believe all of the stuff that my brain conjures up. Most of it not especially good either. Those who 'know' me get the inside scoop on my highs and lows. You others could probably tell by reading all of my posts (something to do if your TOO happy). My mind always was great at playing tricks on my anyway, but the combo of medication I take on a daily basis just to get through a normal day, on top of all of the chemo I've taken over 18 months (today is treatment #29) has made me quite the basket case at times. I do a fairly good job of pretending I'm normal, I am able to function at work, function at home and socialize with people (although this rash I have has made me real self-conscious, I'll not go to meetings or just hide in my cubicle most of the day). I see how emotionally fragile I have become. I used to be someone who hid all of my emotions inside, now I tend to wear my heart on my sleeve and it has gotten me in trouble a few times. I should save all of my 'stuff' for my shrink's couch. I would have thought that I would have learned my lesson after last year's experience, which STILL haunts me. I wonder sometimes if having this 'bummer blog' as I like to refer to it as, is a good idea or not. I think I will keep it because I have an outlet for myself. Thinking back, I can't believe I've been dealing with this since Feb 25th, 2004. It seems like an eternity, I almost can't remember life before cancer..

I plan on updating my story while I wait to get treatment. By the way, my vitals are fine, as usual. BP 128/77 HR 80 good blood counts too.

Peter Jennings

It's pretty amazing how quickly Peter Jennings went from telling everyone that he had lung cancer, to when he died. I think it was about 4-5 months. I wonder how early he knew? He was a smoker*, then quit for something like 20 years, then started again after 9/11. Tom Brokaw said last night that he has known 8 people who died from lung cancer, so when he first heard of Jennings diagnosis, he thought 'well, that's all folks' and he was right. Cancer is such a strange beast. There are so many types that can behave differently in each person. I have cancer in my lungs now that metastisized from my colon (my primary cancer) and into my liver. Looking at the stats for survival rates for stage IV colon cancer it's not real promising. 5 year survival is 'rare' at best. That is the main reason I try to stay off the internet. I don't want to see all of this data about it. The numbers they use are very generalized and also tend to be outdated. I'm getting the latest treatments as part of a clinical trial (Phase II) so I feel that those stats don't apply to me. Tomorrow I go for chemo #5 of 8 - more than halfway there. To what, I don't know....

*And Curse Sir Walter Raleigh, He Was Such a Stupid Git

I've Been RAK'd

I wasn't quite sure what to post today, it's been a strange couple of very emotional days. Something happened today that was very postive so I thought it best to post this. I do know that I have some very understanding friends that are helping me through a lot of my stuff at this time, and I thank them.

First, I have to give a little background. We bought a house in NY State a little over 2 years ago. It needed (and still needs) some work. We have an above ground pool that is over 30 years old. There was no filter or pump or fixens, the water was so gross in it too. I have a friend from my HS days (that I was arrested with as a teenager for smoking pot) who's been living in this area for a number of years, and his father owned a pool business and he (Rick) has run it for many years. When I needed supplies, I stopped by to see him. I hadn't seen him in a while so it was great to catch up on old times, etc. He set me up with a pool filter that could filter a pool 5 times the size of ours, plus the pump and everything else. He was giving it to me for cost which I didn't expect and was real nice of him. He also let me borrow this pump to empty my pool, and set me up with a water delivery on a sunday so we would be ready for summer. I didn't pay him at the time, we were sinking money into the house like crazy and he said it could wait. We got a lot of use out of the pool the first year. However, over the winter, the liner blew out and we lost all of the water, plus the wooden sides were bulging and need to be fixed. Well, last Feb, I was diagnosed with cancer. I had stopped by to get some info on how best to fix the pool and we started talking. I told him about what was going on with me and he shared an experience with me that I vaguely remember hearing about. It seems that a few years ago, while skiing out west with his wife and brother and his wife, Rick slammed into a tree. He was knocked out and had an 'out of body' experience. He told me how he remembered being up in the air, looking down at himself with everyone looking over him. He said, fuck this, I'm not ready to go, and suddenly was concious and being a ski patrol guy, knew the condition he was in and told everyone what to do to help him. He was airlifted off the mountain and was flown to a trauma unit in Idaho. He was in the hospital for months, had brain surgery and leg surgery. He was very lucky to be alive. I was amazed at hearing this and we have felt a comradery ever since. He's always been a very positive person who has helped me snap out of the funks I sometimes find myself in. Anyway...last summer when my pool was not usable, he offered advice on how to best fix it. My brother and I ripped all of the old siding out, bought plywood to fix it, tried out hardest and basically didn't know what the hell we were doing. We didn't get it finished by summer's end. The chemo made it hard, plus my brother lives in the city. So, the end of September rolls around and I am in Sloan Kettering, getting 60% of my liver removed, a piece or my colon, my gallbladder out and a pump installed under my skin. It sucked big time, but that's another post. While I was in the hospital, Rick sent some of his workers over and undid what my brother and I had done, did it the right way, put a new liner in and had the pool filled. He asked my wife not to say anything to me. When I got home, after 16 days at Sloan, I had a 'new' pool. I could not believe it. I cried. Fast forward to today...Thursday of last week, I got an invoice from his company for the filter and stuff we got over 2 years ago. I had felt uncomfortable with not having paid him and then, what he did for me last fall was too nice. I went there today to clear my bill ($1175.00) He was surprised to see me, I would pop in and we'd BS and he'd ask how I was, etc. So I brought up that I wanted to clear my account and he was surprised that I had gotten an invoice. So he went over the numbers and knocked it down to $450.00. Then he said he couldn't take money from me. I did not go down there expecting this at all. I had gotten him a website last year, but he's been too busy to supply me with any info for it so it's just sort of a splash page with a photo and phone number on it. I offered my services to him last year and again now. I am now his web slave.
Rick's an amazing guy, always was, always will be......

Gilda's Club - The End?

What happened
My Letter
Ann's Response

Here is what I sent Ann - Is it over?

Hi Ann,
I can see having the policy to maintain and protect the confidentiality of the group’s members. That was not explained at the time. I know Gilda's is not a good fit for Dana, or the kids at this time. I'm glad that our experience has started some dialogue within Gilda's to address these issues. As far as I'm concerned, it's over and done with. I will not discuss it further, I'm satisfied with the steps that are being taken. No hard feelings.
Regards
Phil.

The Good News....

First the doctor told me the good news: I was going to have a disease named after me.
Steve Martin

Feeling better today, could it be because I ran away to work!

Today...

I just want to run away from home......

INSURANCE - The ' I ' word

Ok, so I'm home, no tickets, no bombings, it's HOT, a lot of tank tops in the city, all-in-all not a bad day. I get home and my wife tells me that some collection agency (P.C.B.- doesn't that cause cancer?) called to tell her/us that we owe $1570.95 for services on Sept 20 - 30, 2004. Well, I looked at all of my claims online, I can do that with my insurance carrier, and saw that the patient responsiblity (I think that means me) is ZERO. Ok, I have these questions:

• when was the exact date and which facility was it?
• what was done?
• why does my insurance say it's been paid?
• where the fuck is my invoice?
• why is there a collection agency after me. Shouldn't I get a bill, ignore it, then have them after me?

The woman was nice, she suggested me calling the insurance company. I asked her to mail me all of the invoices and information, and I'll take it from there....

Back at Sloan Kettering

Well, here I am at SK waiting for my chemo to be mixed. My blood count is good (I've NEVER missed a treatment because of low counts-I'm healthy!), so now they have to mix it up. Who wants day-old chemo, not me! I want fresh-squeezed, vine ripe stuff. The good thing, other than the fact it is air conditioned here, is that they have computers so I can Blog, email friends and generally, screw around. I was sitting on one of the many couches they have here (this place gets CROWDED), and some 'lady' is on her cell phone having an arguement with Scott. She was so loud, it was amazing and annoying. She hung up on him at one point, then called him back to get the last word in. I really don't like to argue on the phone with my wife or someone I know. I'll scream at insurance people and tell them to 'stop dicking me around', but I draw the line with personal issues. It bugs me, but today is supposed to be a RAK* day so I will control myself and try to do something nice later.

Gee, just remembered. My Dad died 16 years ago today. I miss him a lot!

Feeling Deflated

I'm feeling a little deflated today. I go for chemo again tomorrow. It's my 4th of 8 scheduled treatments, the half way point I suppose. I have a feeling I will do more than 8. Don't ask, I just know. It's been over 18 months of this 'chapter' in my life. I go from being real gun-ho, to being so sick and tired of the whole deal. Life wasn't real easy before this either, but now it's one thing after another it seems. Well, hopefully I'll be able to zip in and out of the city tomorrow and I won't get a ticket or anything and be home by 2 pm. I Probably should not have posted today, but what the fuck .... just feeling let down.

Back to Work

Let's see how today goes, my stomach has calmed down. I feel rather freakish though. I wonder if anyone will comment on my skin. I didn't tell too many people about the new cancer this time. I'm curious to see who comments, or if they will pretend there is nothing unusual.
I had my 15 minutes of fame in here already :-)

Saw Mom Today

(Mom, 13 yrs old)
I saw my Mom today, she is doing ok. She had 125 stitches in her forehead! She also broke her left wrist. It is so amazing that she did not get hurt worse, the doctors were amazed. At 86 years of age she is still as sharp as ever (I'll leave that comment as is). I' still feeling a little 'crappy', but I did manage to get out on the lake to kayak. It was great, plus I've been swimming a lot today. Looking forward to a peaceful evening, going into work tomorrow even though my car is still in the shop. I'll get a ride from a friend who lives close by....

Feeling Blah

I don't quite know what to write, so it is probably best to keep it short. I've done 3 chemo's, best case scenario is 5 more. They are not fun at all. If I respond well to the treatments, I may do more. I've been approved for 16 treatments. I hate every one of them. It's controlled poisoning that could save my life. How strange is that? One other thing I had forgotten about, is how the chemo can change how food tastes. Everything is becoming very bland to me. I hate that too!
As far as my treatments go, a friend once told me:

"Sometimes you have to go through things,
not around them"

Good news, my Mom seems to be doing okay. It's amazing she didn't break her neck or something, only her wrist. I will get down there tomorrow to see her.

Another Fun Day

Well, it's been another exciting day. Feeling generally pretty crappy. Didn't kayak, been over a week probably, I don't keep track anymore. I did manage to throw myself into the pool for a bit. My face, which was getting better, is now going back to a toad face. I was able to get my car started, I brought it down to throw more money at it. I'm getting a different car in about 2 weeks, but I need something now. While sitting in traffic to pick up my son from swimming, I get a call from my sister telling me that our Mom had fallen down the stairs and broke her wrist and cut her head. She just turned 86 on the 17 of July. I have a real bad feeling about the rest of this year.....