My Life Feels Like a Lie

I just found out the other day that the chemo is working. I'm guardedly happy. I just feel today that I live a lie. Not a happy feeling. I'd probably feel this even if I didn't have cancer.

Significant Shrinkage

I went to NYC today to meet with my Oncologist and to go over the results from Saturday's CT scan. My wife went in with me and we met my brother and his wife there. After getting the blood work done, we were surprised to get in to see the Doc in a relatively short amount of time. She basically came in and said 'there is significant shrinkage in my lung tumors' and that 'we are going to continue with the treatments'. I was expecting the word shrinkage, but I was happy to hear significant in front of it. I did get a printout of the report, but it is like reading a legal document so I will just go by the short and sweet version she supplied. They are also going to try something that could help with the cramping I get in my stomach with the CPT11. So right now, I am scheduled for 4 more treaments, then I meet with a nurse, then probably 4 more then another CT scan. Bottom line, I am very happy that the chemo is doing what it should be and that I am having a very favorable response to it. I'm not looking forward to more chemo because it sucks and I really fucking hate it, but at least it is helping.
Thanks everyone for your support.
Love to all
-phil

Countdown to Tomorrow

It's 9:40 pm, sunday night. I had my latest CT scan yesterday which went, well, like a CT scan. I've had probably over a dozen (maybe even a bakers dozen) over the past 19 months. I will say they've made great strides in the barium drink you have to have for the prep. If I could only throw a shot of rum in it... I will be trying to get to sleep soon. My sister was going to drive over from her house which is a half hour away to be here at 5:30 am so Dana and I could go into the city together. But Dana's sister (who lives a half mile away) will be able to watch the boys. Believe me, it's big deal, but that's another blog entry. Dana normally does not go with me for the chemos at my request. I mean, they are boring, I'm boring when I go, I don't feel like talking so I'm not the life of the party so to speak. Whenever there is a consultation with my Oncologist, Dana, my brother and his wife usually join me. I have an entourage so to speak. I like the support on these days. My appointment is for 8 am. They will take blood first, then I will have to see a nurse, a nurse practicioner(sp) and then the Big Cheese herself. I'm not quite sure what I will hear tomorrow but my guess is that it will be along the lines of that my therapy, the chemo, is working and that the spots are shrinking and that we will 'stay the course' for another 2 months. I could also hear that it is not working and they may present my case to the surgical team for review. The past 19 months have been so sureal, never in my life did I think I would get cancer. It's not in the family at all. I figured I'd have a stroke or heart attack and die like my Grand Parents, Dad and Aunts and Uncles did. I always had to be different, didn't I...
I'll post my results tomorrow, sorry to keep you all hanging.

Brothers

I Need a Break

I just want my stomach to stop hurting, that's all...

How I feel tonight

I just had chemo yesterday and the side effects are really kicking in tonight. I had the double dose, Erbitux and CPT11. The CPT11 reacts with my bowels and stomach where I feel like a woman must feel with contractions when giving birth. It ties my stomach in knots. I will feel like this all day tomorrow. I'm going to work from home, I'm lucky they let me do that. I also can't sleep even after putting in a 11 1/2 hour day (w/o lunch) with no blogging!

Back to NYC

After last weeks photo post, I don't think I can top that. I did have no trouble getting into the city today, and I drove in with the 1996 Camary that we just got. It has AC that works and a radio that works and a mear 120,000 miles on it compared to my Volvo that has 278, 000. I left the housr at 5:30 am and got to SK by 7 am. On the elevator, I saw the surgeon that de-livered me back in September 2004. He remembered me, that made me feel good. He is a good guy, one of the best in his field. He was sorry to see that I was back in treatment. He asked me if I've seen the colon surgeon I had, Dr. Weiser. I thought he asked me if I was wiser. On the menu here today is my weekly Erbitux (1 hour), my every other week dose of CPT11(1 hour) which will cause major stomach issues for about 4-5 days, and the special of the day-a refill on my heptic pump.

I am no longer getting chemo in this pump, but it must stay inside of me for a minimum of two years. It does have to be reilled with an inert solution so it does not dry out in case I need it again. The greatest chance of recurrance is in the first two years. Once the pump is taken out, it can not be put back in.
So when I am finished in NYC, by noon I hope, I have to go to the DMV to register my car. Somehow, I think that the chemo will be the best part of my day...

Ups and Downs, Highs and Lows

I am often amazed at how manic my posts are and how they must look to everyone. One day, I'm riding high and all is good, it's good to be Phil. Then other days I look like I'm ready to go postal or something. I used to be on a more even keel before the cancer (I was just postal ;-) It's probably rather normal to feel like this, as a matter of fact, I know it is because of other cancer folk I've spoken to at Gilda's. Plus most people have good days and bad days. I just think it gets exaggerated due to the medication and the severity of my situation. I feel pretty good today, this week I go for chemo on Tuesday instead of Wednesday (too many cancer people in on Wednesday so they moved my appointment). I don't know if it's good or bad, it's the treatment that will screw up my digestive system for about 4-5 days, I really loathe these treatments in particular. Just a general health update here. My rash is getting a little better on my chest and back, but my face still hurts (I know, it's killing you) from the rash. The skin on my fingers seems to have stopped spliting for now. The skin on my feet is now spliting. My feet and toes are still numb, they feel furry. My sides still hurt and my stomach muscles seem to be sorer. I haven't kayaked in about 3 weeks. I like to think it's because of the heat, but I think I'm just tired. I still swim pretty much everyday. Other than that, I feel great!
I hug my wife and kids everyday....

A Credit My Ass

I went to my brother-in-law's today for my nephew's birthday party. His family was there (2 sisters, Mom and Dad) and a few other people. His family is pretty nice, they are aware of my cancer since I see them at most every family function and holiday. I was talking with one of them when they brought up how I am such an inspiration to her. I used to like to hear that I was an inspiration for people, but lately, I'm getting tired of it. Sure, when most people see me, they see a guy who is trying to fight cancer and lead a normal life. They don't see me when I'm a fucking mental case and can't think straight, I get paranoid, I get clingy. No, they see Phil, fighter, inspiration, survivor. I almost expect them to tell me 'I'm a Credit to my Race' or some shit. I can't tell you how many Lance Armstrong stories I hear. Yeah, I like how he beat cancer, I'm beating cancer, I wear a bracelet, I gave out over 100 of them (about 8 people wear them) they love him, they hate him, he's screwing Sheryl Crow - whatever... I don't think many people understand that I have no fucking choice other than to fight. I didn't choose to have this. If I don't fight I die. I don't know how inspirational that really is. If you're backed into a corner and have no options, what do you do. I could kill myself to get it over with, but I won't. I could stay home and cry all day and ask 'why me, why me'. Why the fuck not me? I used to think in the beginning that I got cancer because I could handle it, I was supposed to set an example of strength for others. I don't think that anymore. I got it because I got it, period. I put up with all of the chemo and tests and all of that shit because I have no other option, period. I put on a face because I'm afraid to show everyone how scared I really am.....

I Really Love This

I want to share it with everyone

Thank You One and All

I would like to thank Mr. Schprock for providing the link to my site to let some new people get a view into 'my life', and to my many regular friends for their continued visits and to everyone's words of encouragement. Not to get on a soapbox, but PLEASE everyone, do not neglect your health and do get regular checkups. Often with cancer, by the time you feel sick, you're almost dead so early detection is the key.
I do have a Happier Blog too.
Now back to our regularly scheduled program...

My Visit to NYC and Sloan Kettering

Today I wanted to try to do a photographic journal of my trip into NYC. I started the day by waking up at 4:30, but I didn't drag my ass out of bed until almost 5 am.









I could not believe the price of gas by us. It's actually about .25 more expensive in NY State, so I try to fill up in NJ.
Can you imagine, $2.53.9 for 1 gallon of gas.
I almost spit out my $4.00 12 oz. cup of Starbucks coffee!












I really felt like having some melons for breakfast, but as luck would have it, my favorite breakfast nook was not open yet. Darn!












So off I went into New York City. Crossing the George Washington Bridge is not too bad if you can make it there by about 6:30 or so.









Just my luck, a car had overturned on the Westside Highway (Henry Hudson Highway) so I had to take the back streets. Broadway down to Westend, and then to 66th street where I park.
Moments later, the Number 57 bus came by. This is great because it picks me up right in front of where I park, then it takes me over to the eastside to 57th st. The facility I got to is on 53rd street.












After I got off at 57th and Lexington, I walked down to 53rd. On 54th street, there is this cool church of some kind. I don't know what denomination it is, but it is a really cool looking place. It looks Greek to me!












Right down the middle of the avenue is the Chrysler Building, one of the coolest in the city. I've never been in it, I hope to someday.












After I checked in the SK, I usually go hit the bathroom, but I thought I didn't have to document that! then I go and stake my claim to one of the two computers they have there. I usually check email and update my Blog. Wow, what a cool looking blog that is on the screen. What a talented designer that person is!












Then after a few minutes, you get a call to have your 'vitals' checked. Weight, blood pressure, and a CBC (Complete Blood Count) taken. This is Barbara, one of the nurses that works in this part of the office. She's real nice. She was very happy I was going to take her picture.









After a relatively short amount of time, maybe one hour, I was called to go in and get my treatment. Today it is only the Erbitux. I found out that this drug is similar to Avastin, which cuts down the growth of new blood vessels so it starves tumors. But there is also an added special feature. It has more mouse antibodies in it! That may explain my cravings for cheese and Tom and Jerry cartoons lately. The nurse I had for the chemo today was Stacy. I've had her before, she's real nice. They really are all very nice. It takes a special type of person to be a nurse I believe, especially a cancer nurse.









She had no problem with me taking the picture, but she did explain that is really not allowed. She then got my meds ready and stuck me in my port (located in my upper chest) with the needle and got the Erbitux ready. She hooked me up and then I asked her to take my picture.









I get the Erbitux and also some sodium chloride (?). When I only get the one infusion, it just takes about an hour. When I get both (next week) it takes about 2+ hours. They really have some great plants in these little areas. They also have a TV, but I never watch it, I usually just take a nap.












Inside of the lobby area, there is a very cool Chinese looking backdrop with a waterfall and silouettes of trees. I went to take a picture and the security guy came running over and started asking me if I was a patient there and that I'm not allowed to take pictures. I didn't argue and just beat feet so he would not erase all of my shots. Here is a picture of the front of the facility. The awning is heated in the wintertime.









So when I got out, I stopped at this great little cafe and got an egg, cheese and ham on an english muffin and sat outside and ate.









I then started my journey back to my car. Usually, I would take the #57 bus back to the garage, but since today was gorgeous in the city, plus I wanted to take some pictures, I decided to walk. Here's a shot of the CitiCorp building. This happens to be a target for the terrorists, so it is usually well guarded.












Being somewhat of a botonist, I couldn't help but notice this
rare tree. Oh yes, there was also a 30 ft tall statue of a naked woman.












This fountain is in front of the Plaza Hotel at the bottom of Central Park. It's a real nice place to hang out. They are currently renovating the Plaza and making some rooms into condos. My brother told me a story a few months ago that when he was about 18 or so, him and some friends came in to the city to see the St. Patrick's Day Parade. Being extreemly drunk, they somehow made their way into the Plaza and found they had to 'take a leak'. So they found a balcony and pee'd off of it on to everyone's parade. Just thought I'd share...












So I walked through Central Park. Here is a cool tunnel I went through which surprisingly, did not smell like pee.












Here is the Bethesda Fountain. Many times there will be musicians or dancers there. You can also rent a rowboat there (no kayaks though)








This cat was real good on the sax. He was playing 'Love for Sale'. I didn't look to see if his girlfriend was around... He got a dollar from me.












These guys were ok too (and got another dollar) I wish I had the nerve to play in the park (hell, I wish I had the nerve to dress like them!) I should do it one day as a goof and see if I can make a buck or two.












What can I say? Strawberry Fields Forever...








Back home until next week....












I must say, taking these pictures really made the day seem like fun. I have to try something else some other time. Hope you enjoyed it.

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 :-)