Monday, December 6, 2010

If you see me, hug me.

The itching is non-stop. My arms and legs are all cut up due to scratching. My body is lit up with goose bumps and rashes from the time I get up to the time I sleep. I'm anxious and sweaty and constantly moving and scratching. Figdety. Pain. Uncomfortable. Obsessed with getting that one damn itch. And then obsessed about that other one damn itch. So while your hug is a good sign of support, it actually has a practical application in that any contact will take me away from this mess of a life for a second or two because your arms will be covering an itch somewhere. You can rub my back too.

The only time I don't itch is when I'm sleeping, although itching has woken me up from a slumber or two. But with a good cocktail of sleeping pills, NyQuil and Benedryl, I usually find REM sleep captivating. 

I go in to See Dr. O this Friday. Because of the itching, my whole team is convinced that the cancer is growing all over. I am the last hold out. I think it's a reaction to the meds and the fact that my body is breaking down. Ya see, most of these aren't regular itches. Most of the time, they're electric shocks first and then itches. I am a fifties science experiment. 

This different type of itch can also be one other thing: full body nueropathy. I think the nueropathy in my hands and feet has spread throughout my body. And if that's the case, then I may have to get off the trial because it's not healthy and can be dangerous in its own right. 

If it is neuropathy, my body is breaking down to treatments. I've been doing this almost non-stop for three years. I've had a total of six different treatments. Most patients average around 3.5. When I started on this route, I thought jumping on and off trials would only be a matter of keeping the cancer at bay enough to get on another trial and then see how that works and then, if nothing is working and the tumors are getting too big, I pull out one of my two bullets. 

Barney Fife had one bullet. I have two. I know of two drugs that are as sure as sure things can get in this world. Which is about 70% effective. One is called SGN, which is something I talked about and wouldn't be ready. The other is called bendamustine. It's traditional chemo that knocks you right on your ass for five days but then gets better with every infusion. I might be able to stay on it for four or five months. I wasn't planning on using this for another year but because of the nueropathy, my body is running things now.  

And in fact, it is all about my body now. I relate to people, places and things through the wishes of my body. If my body is tired, I relate to that person as tired. I don't try to overcome it with mind power. That's already being used to deal with blocking out an itch here and there. 

Only a short while back, I was feeling bad that I wasn't able to do that many things around the house and I felt guilty as Sherri looked at me with a scorn while carrying a hammer to her next fence mending issue. Now, my body tells me not to care and I don't care. My body has control of me. I do what body wants. Body is all powerful. George Orwell would appreciate this post. Okay, he would have hated it for the poor use of grammar and lack of creative metaphors. But George Orwell's nephew, now there's a fan.

I get scans done this Thursday. They will cover more area this time. After my team conceded that I do infact have a node in each bicept and are haunted by this itching issue (yes, they are haunted. For three weeks, they've been shooting me emails with every possibly remedy and no luck. One of my PAs even said it was keeping her up at night. Isn't that nice?). They think the more scans I get will show more tumors in hard to see places. My body says, "Let them look." And I will let them look. 

Sorry this isn't a more interesting post. It's late. I'm on my nightly cocktail of drugs and my body is not a good writer. He's better at math.

Wednesday, November 3, 2010

Somewhere I'm in there

This is me now. It took awhile to get the best pose and best lighting. It was the best I could do. For a long time I was very sad that I've gone from a 43 year old man to a 73 year old man.But now I understand that it is still me. I always wonder if complete strangers know just by looking at me. Not that it's a good or bad thing. Quite honestly, I usually wonder right after a stranger was nice to me. As if they're being nice because they're taking pity. Once again, not a bad thing. I just wonder. I rarely take pictures any more. I don't want people to remember me this way. Sherri once talked me into taking a picture with Maddie because I don't have anything with us together. I did. Boy, do I look terrible in it. I tried to smile. 

"She will suffer the needle chill. She's running to stand still." Bono, of course.

Some reduction, sort of

I have been waiting to write this to see what my status was. But it's been so confusing.

My itches are still around and getting worse, if that's possible. No drug can help it. We've tried just about everything. Even so, my scans came back showing a 20% reduction. It's really not 20% in the way you or I would understand it. What they do is pick five or six tumors at the beginning of the trial. Then they follow those seeing how big or small they get in reaction to the medicine. Then they take the cumulative and divide it by the number of tumors. That would be 20%. So if one tumor reduces by 70% and one not at all, that's still 35% reduction. And then there are tumors that don't count on the trials but can still kill me nonetheless. I have a lot of those.

But what basically happened is the treatment stopped the growth of all tumors right now but we're waiting for them to start up again. It would make more scientific sense for them to start up again. The tumors on the right side of my neck are down quite a bit. The big motha of a mass on the left side is unchanged. A tumor in my left arm pit is smaller too. Everything inside of me is slightly smaller to unchanged.

Yes, this is cause for some optimism, if it wasn't for my symptoms. It is still confusing my docs and making my life relatively miserable. The symptoms aren't just accidental. They're very real and very telling. Basically, nobody has much of a clue as to what's going on. 

I also passed through my one year anniversary of my second and latest relapse. Back then, I had this one small tumor in my neck. One year later, there's a tumor on about twenty different places. Three or four in my right shoulder that keeps me from doing just about anything strenuous with my whole arm. 

My doc wants to put me on a drug called bendamustine once we can figure out what this one is doing. It's a much harsher drug but we both think I'm going to need it. This could be the year of the harder drugs.

Oh and one other thing. I got another bad cold. So while I write this, I have itching, some left over body aches from the treatment, some fatigue from both, runny nose, sore throat, stuffy head, oh fuck it, I nothing on my body works right now. My chest pains are even back. And I gotta pick up Maddie in an hour. I took all the drugs I thought I can take. I'm going to take more.

Wednesday, October 6, 2010

itch is back

Very itchy day today. Doc said the itch is a reflection that the treatment isn't working but he'll give it one last try. So I got this for the next two weeks. Vewry itchy. I wonder if I'll sleep tonight. Out of oxycodone. Not like that helped.

Friday, October 1, 2010

I'm afraid of falling asleep

I haven't been in a good way since we last posted. I got sick and couldn't get rid of the cold. It lasted a couple of weeks. I was sick through chemo treatments.

Then my B symptoms started up. B symptoms are the type of side effects for people with Hodge type B. That's the bad hodge. And usually the onset of symptoms is a bad thing. It means that the cancer is growing more aggressively and is all over your body in big chunks. It basically feels like the cancer has taken over the majority of your body. I'm supposed to see my doctor on Monday. He doesn't have office hours on Monday but he's coming in to see me. He's also bringing his second in charge and my whole team. They've had meetings about me. 

Believe it or not, I have been too overcome with B symptoms to even worry about the latest progression of cancer. These "symptoms" are basically side effects from the cancer. Easily the worst is the itch. Now, I know that would surprise you. How bad can a little itching be? If only it was a little itching. Every day, every second, I itch all over my body. It's not like a skeeter bite, either. This itch starts with a shock to the skin, much like a knife tingling and then an unrelenting urge to itch. And it happens constantly and completely randomly throughout my body. So if you imagine that my body were a Christmas tree with random blinking lights, that's what's happening every second of the day and night. It is hell. 

The doctors keep trying different steroids but none are working, which isn't a surprise. The docs basically will tell anyone that nothing alleviates this itch. Remember the good old days when I can just pop an oxycodone if I wasn't feeling well? I tried. I tried really hard. I popped a lot of oxy and it doesn't really do anything.

This morning at 5 am, I had a marvelous conversation with a guy at the drive through at McDonald's. I was on benedryl, steriods, sleeping pills, oxycodone and hydrocodone. But I was wide awake because I was itching all over, much like the many nights before. During this, the itching stopped. It was an unbelievable feeling. Peace. I ordered my breakfast burrito and the itch soon came back, faster than the breakfast burrito came up. 

Now the second of three main B symptoms have started. Night sweats. Because cancer now owns your body, it fucks with your temperature. Some older women have described it as the worst, most hyperactive case of menopause. While you're overcome with this itch, a wave of heat from within your body will blow through you. You sit and sweat for ten minutes. This happens about every hour or so. What you have left is one really slimy body. 

The first inclination would be to take a shower to help with the temp and itch. But the water hitting your body stings like knives even more. Plus, your temp goes up so while you're trying to clean your body, at the same time, it's sweating.

Right now, it's midnight and I need to sleep. I'd like to tell you more. Like how, for instance, the treatment leaves my feet in constant pain and my hands always tingly. Once a day or so, I cramp up somewhere, in the hands, feet, leg mostly. And because my body is losing a war inside, I have no energy to do anything on the outside.

When I was in pain previously, I go to bed. But I am so afraid of what happens when I wake up that I would rather go back to the McDiddies at 5 am again to talk. If I end up sleeping, in a couple of hours I will wake up sop and wet. The sheets will be wet, there could even be a puddle. My shirt is wet and I'm freezing. These are the night sweets. 

At this point, I lost the benefit of being able to completely sleep. So I slumber. With sleeping, I don't feel the itch. With slumber, I feel everything. I can't go back to bed because I wake up to the itching body, the itching stinging body. I slomber for a couple more hours. Now as I slumber, I itch and sleep, then sweat, itch and sleep. Finally, I give up. Waking up and giving in to the day of the itch. 

I don't fight any more. I've been fighting cancer for going on three years now. Every day, I have had to wake up with the mental exercises of overcoming the fear of cancer. Every day, I have to do other mental exercises trying to overcome the pain of the cancer. Now I no longer have the benefit of waking up to anything. The cancer has invaded my sleep. I get up from slumbering in a sweat, cold with this dominating tingling and itching feeling all over my body and all wanting attention right now. I don't pysche myself up for the day anymore. I don't set goals. I don't think,"I should show Sherri or McKenna how I used to be for an hour today." Now, I just get up. 

I have no interesting thoughts anymore. I just have the itch. Some people want to go back to before they had cancer. I'll settle for an hour or two a couple of years ago when I felt normal. I never feel normal anymore. I want to remind my wife that I didn't just sit around and do nothing. A long time ago, I helped her out. Now she can barely stand to look at me because I am a waste. She has to dicipline the kids, she has to watch over Conner, she has to take care of Maddie. She works, then comes home and does all the housework. She is two parents and wonders when the fuck will I do something to help out around here. She bears a burden now and I am the reason. Why should she look at me with anything but hatred?

Wednesday, September 15, 2010

I believe in angels

I am not a religious man. Oh, I tried. After I got my stem cell transplant, the big goal every day was to see if I could make it to the cafeteria to get me some food in me and then to a church service which was right across the hall. At MD Anderson, they had a different service from a different Christian religion, so it was cool to see all the different religious philosophies and traditions play out. I particularly like the Lutheran and Unitarian churches. Really wonderful philosophies. That Martin Luther was on to something. The Catholic mass was annoying as usual but maybe that's because I had to go through that every week for twelve years in school. I only walked out on one religion's service. It was by this Asian Christian religion of some kind and they decided that instead of mass (which I had liked previously), they were going to spend the time laughing. I kid you not. It's supposed to be an effective way to cope. Whatever. But hey, I'm there to see if God can do something about my cancer. Not to laugh. 

And without even anyone sort of looking around to see if what this guy said wasn't a joke or something, suddenly there were about thirty or forty somber adults laughing really loudly at nothing. I started laughing only because, well, it was really stupid. Then after getting some rude looks because I was clearly not participating in the right way, I had to leave. It's one of those things that happen to cancer patients. Every once in a while you find yourself in a really wild scene. I think it's because your life is stuck in an extreme situation and you're looking for extreme results. Sometimes it just gets really extreme.

Any way, things didn't work out for God and me. He didn't keep his end of the bargain so I've gone back to having this sort of Hindu/Agnostic belief. Don't worry, I'm not going to lay it on you, although I have thought it out quite nicely and would put it up against any religion. And by the same token, I hope you don't fill my reply section to this blog with too many pleas to come back to God. I appreciate you doing it once or twice but please allow me some respect for my sort of Hindu/Agnostic religion. 

I bring this up because I do, for some unknown and completely irrational reason, believe in angels. I know of three of them. I'm convinced of it. they didn't have wings and for most oftheir lives, they're people. But for an instant, they became angels. I swear. 

In each case, I had stopped fighting. And was many of you know, when you stop fighting, you stop. Each time, I was in a lot of pain and mentally couldn't keep up the things you have to mentally do on a daily basis when you have cancer. I was at a point where I didn't care if I lived or not and a person came to help. One was a nurse who helped me get through the night after my stem cell transplant. Since I have little memory of my time during my transplant, I don't even remember her name. But I know she had a cool Texas accent and way about her. Not the dumb Texas way most know about. The other Texas with a little style.

Another is my wife. It was during my stem cell transplant and I was in so much pain, I was getting a little delerious. I couldn't eat anything. My throat was killing me and even if food got beyond that point, it would come back up the same way pretty quickly as I was feeling very nauseous. My body felt so strange and alien. I couldn't sleep. I was just laying there in this hospital in pain day after day. So one night, my wife went back to the hotel and made me a bunch of peanut butter and jelly sandwiches. Like ten of them. From childhood, I've always loved PB and J. And today in restaurants I'll order it if they got it. Because it's often listed on the kid's menu, I do get strange looks. But at a Chili's or Applebee's or some place where, quite frankly, nothing is good, the PB and J is always a sure thing. I know, making a PB and J sandwich doesn't seem too miraculous or angelic. But it's not the PB and J. It's the act. I needed someone to help me. She was there and she knew exactly what to do, although she was a little heavy on the peanut butter. She knew that for me, eating a good PB and J isn't just a meal, it's an event. Sometimes I even remember my grandma, who was a champion PB and J chef.

I met my third angel just recently. As I hinted to in my earlier post, I decided to go on that clinical trial. Well, the protocol called for drawing a lot of blood out of my body the first day. I would get stuck once every eight hours. And then after that, I would get stuck more times for tests. Now, usually I can handle this. For one thing, the plan called for basically two IVs. One IV for the medicine and the other IV for drawing blood. Drug trials are so regimented that you can't even have the same IV because of the fear of some kind of tainted result. So anywho, two IVs, I can handle that.

But that's not how it went. What I realized was, my veins became so different even from my stem cell transplant days. For any cancer patient, getting chemo makes the walls of the veins tougher. The more chemo you get the tougher the walls are until you really can't even stick a needle into them. I had a lot of chemo. My veins got really, really thick. Also, if you get stuck a lot, your veins get smart. Once they feel that needle coming, they back off into your body. So what happens is you will have a nurse sticking a needle way into your body, poking around muscles and bone, again and again and really hard because even if he or she can find a vein, they still have to get into it. 

As the plan was supposed to go, it wouldn't be that big of a deal because I only needed two IVs. No problem. But they were not only having trouble finding a vein and then getting a needle into it, they also had trouble keeping the needle in the vein. It would just pop out. By about noon, it was clear they weren't going to go with the two IV plan. They had to stick me every hour. 

This day, without a doubt, turned into the most painful day of my life. I'm not a wussy about needles. I used to be. But I got so used to getting stuck that it stopped bothering me. But this day, I went through about twenty sticks and about seven different nurses each trying their technique. Some of them would talk to the vein, some of them would yell at the vein and then at me, almost all of them would poke hard. They tried both arms, both hands and were discussing whether they should go into a leg or somewhere untouched. 

By seven pm, I was done with the blood tests but not done with the other tests. Now, with these tests, they use a bigger needle because they have to shoot nuclear stuff through you. The nuclear stuff gives you the Hersey squirts but hey, a little Hersey squirting was nothing at that point.  

I really didn't know what to do when I met the nurse who had to stick me for this part of the day. He was a guy. I've had him before. He remembered me and asked me how I was doing. Like my angel from Texas, he grew up in the area and had gotten the better parts of the culture, even though he was from a completely different part of the world. New York is a strange place if only because of the residents. There are the rude people and then there are people who are unbelievably nice. Sometimes they're the same person, just in different moods. Of the nice ones, many actually turn out to be really laid back. Like they've seen everything, had gone through the whole stressed out city thing and had come to a place where they were just comfortable with life. He was one of them. He looked at my arm, which was black and blue and didn't say a word. Most nurses would look at my other arm but he didn't. I told him I might want to pass on this today and he said to give him one shot. He said that he sees a vein that is "crying out to be stuck". And in an instant he got me. I barely felt a thing. I was exhausted, completely spent and he got me like it was just a routine part of his day. When I told him what had happened, he said he could tell by looking at my arms but then he went on for about ten minutes showing me all the veins he could stick with one poke.

The thing is, with each of these people, it was no big deal. They all think they're just doing their job. I think that's what makes them angels. They don't know it's a big deal even though it can mean life or death to the people on the receiving end. And then they go on with their lives. Maybe, eventually to the next kind act when and if it happens again like it's a part of life. But the thing is, it's not a part of life. Like I mentioned before, a cancer patient's life is much more extreme. The pain can almost always be tolerable but sometimes it just can't. And then this person comes around and fixes you like it's so simple. 

My Hindu/Agnostic religion differs from most Christian sects in many ways. One of them is the issue of angels. The Bible makes you think that they're these beings with wings who watch over you. I think they come to unknowing people, do their very little and unspectacular thing and then are gone. And unlike my Christian religious colleagues, I have proof.

As for my new treatment, it's working so far. I have no growth to even some small reductions and that was after only one treatment. But I still have a lot of itching, night sweats and nausea related not to the treatment but to having too much cancer in my body. Still, it's a start. 

Thursday, August 19, 2010

Michael Jackson, chipmonks and cycles

Damn you oxycodone. Damn you to hell. Why do you have to wear off? I could swim in your warm pill-arms all day and night. But you wear off. How am I ever going to be a drug addict if you wear off?

I saw my doctor today and he literally compared me to Michael Jackson. Not the young, cute black boy. Not the older, nose-less white woman. But the dead drug addict Michael Jackson. He asked me how I was dealing with the itching since there is really no cure other than getting the Hodge to go away. I replied that I have a cocktail: take two oxycodone and three anti-itch medicine pills that don't really work. He started laughing. He said, "Well, of course that will keep you from itching. You're asleep. Ask Michael Jackson if his drugs worked for him and he'd say yes too." But funny thing is, he didn't tell me to go off my cocktail. He didn't say whether it was dangerous or not. You don't tell cancer patients they can't do something. It's not right. Heck, I might rob a bank. Who's going to convict me?

So yes, indeed, I saw my doctor. I decided to go deep. Well, my wife helped. My wife is a nurse so she has good medical sense about her. She's also a very, very sensible woman who is never afraid to tell it exactly like it is. She'd be the only American Idol judge who actually judged. She always tells me my breath stinks or I look like an idiot in that shirt. So I know I'd get straight-forward medical advice from her on this. 

All she said was, "Well, if this doesn't work, we can always try traditional chemo." And she was right. While other treatments had better success rates and this one had, um, none, I'm still willing to try something a little more experimental because I can right now. 

"Why can I?" you ask. "I mean, you were just about to die at Christmas time." Well, the truth is, I can die at any time. But during my month off without any medicine other than an occasional steroid and my trusty oxycodone cocktail, I noticed something strange. My nodes didn't feel like they were growing out of control. Oh, they were growing and I got a big one on my right side. But nothing like I had thought. And that makes senses since the previous treatment left others in a similar slow growth period.

Today the scan proved it (although I still don't believe it and won't until I see the report). But while a few are big, nothing grew more than 1 cm in one month. For those of you who aren't medical professionals, that's pretty good for someone who had no chemo during that time. Basically, they're growing but at the same pace as they were when I was on treatment. 

So I have a screw up due to me and I'm using it. Meaning, if this doesn't work and screws up, I think I still have enough body left in me that doesn't have a cancerous node attached to it that I can overcome it. 

I have to stay in New York for ten days. During which time I will get a transfusion of the medicine and then blood tests every day after that. 

It reminds me of when I worked on animation. I did it twice. One time I flew to LA and the next time I somehow managed to get a trip to Paris even though I had given the agency my two weeks notice. Animation takes a long time for the animators to render. So instead of sitting there looking at their drawings for eight hours, you'd come in in the morning (the animators would have a night shift) and then you'd say something like, "That's great but the black snake needs to form sort of a squiggly, wiggly shape." And the producer would write down, "Needs more squiggly wiggly" and then you'd leave. You'd have the whole day to yourself and then come back at the end of the day and say, "That's fine. But the squiggly wiggly is more like a swerve. and the snake looks more like a chipmonk. We need less chipmonk." And after the producer writes down, "Less chipmonk," and then underlines it, you'd leave to go to dinner and get really drunk and repeat everything in the morning. This would go on for a week or so until the client showed up. At that point, you'd talk about going back to the hotel to do work but would actually go site-seeing and the client would talk about going back to the hotel to do work but would actually go site-seeing.

Well, that's what I have ahead of me here in New York at first. But after the first ten days, it gets sort of complicated and frankly, I'm not even sure I can pull it off. 

After the ten days, I start "cycles". On days one and eight of each three week cycle, I will come back to New York in the morning, take a taxi to the transfusion center, get the medicine for an hour and then take a taxi back to the airport. Do it all in one day. It's just the opposite of squiggly wiggly. Basically once a week on two consecutive weeks, I gotta fly in and fly out. That's the only way I can do it and keep from spending a lot of money on hotel bills. 

If I look at it another way, it's easier to swallow. I already see the doc every three weeks. So this is just adding one trip. I hope it works. Heck, I hope a lot of this works. 

Thursday, August 12, 2010

McKenna and some, ah, thing.

It's Friday the 13th. Just thought I'd creep you out a little.

Sunday, August 8, 2010

The 10% rule.

To the world of academia, the University of Texas is like the New York Yankees. They have a ton of money and aren't bashful about spending it. The story of why is pretty interesting, especially for those of you who may be looking for a cheap but good out of state school.

About a century ago, the state of Texas was looking for land to put their new state school. They bought up a bunch of acres in West Texas. It was dirt cheap. Nobody wanted to live there because, well, it sucks. But politics came into play and the Texas lawmakers, many of them drunks, decided to instead put their state school in the capital of Austin. Right when they were about to sell the land in West Texas, something wonderful happened. Oil. Someone figured out that all that land was right on top of one really, really large puddle of underground oil. So instead of selling it, the drunk politicians did something very smart--they leased the land. They would get both money from a lease and part of the profit from the oil. 

Even today, when the price of oil goes up and oil companies make all that money, the University of Texas makes money, too. Tons of it. The benefit of being awash in Texas crude is that tuition is very low. While the University of Colorado in Boulder costs upwards of $50,000, you can go to Texas for a fraction of that. Sure your child can't ski in Austin but there are plenty of other pursuits to keep that gradepoint average at just below 3.0. 

The other big benefit is the school can pay ridiculously high prices to get the best talent. Like the Yankees, the UT waits for a professor to develop his or her skills elsewhere. Right when those talents peak with a breakthrough research paper, the UT comes calling and steals the prof. Another thing they do is go the free agent route to find leaders of industry and pay them a ton of money to be visiting or guest professors.

Shelby Carter was a guest professor for my Intro to Marketing class and also the best teacher I've ever had in my life. He was a bigwig for IBM, Xerox and TI and then made millions with his own company. His lectures were mindblowingly insightful and honest. Stuff you'd never get reading those insipid books. 

Professor Carter did those Bucket List Last Lectures before anyone. And he did three of them, the last three lectures in the class. His third to last one was talking about the common wisdom that seems to always come upon us about how America is losing out to other countries. At that time the newly-annointed superpower was Japan. Since then it's been China, India, Brazil, etc. His second lecture was about how all that was a bunch of bull. His point was that even though Japan was killing us in electronics and some other country was leading us at this or that and all the numbers looked bleak, it didn't matter as long as America was innovating. Innovation changed the rules of the game. Once the Japanese passed us in electronics, the computer came around. Once India passed us in computer programming, the Internet comes along. We keep winning because we simply change the game. So as long as we keep innovating and rewarding innovation, we'll keep winning. On a now predictable political tangent here but that's one reason why the "Drill baby, drill" strategy was stupid for the Republicans. It asks us to root for a game we can't win. The party of business was ironically espousing a philosophy that in the long run is bad for business. Instead, we should do what we always do and focus on changing the game. Anyhoo...

His last lecture was easily the most interesting and legendary on the campus. It talks about six or seven observations he's made in the business world and how this knowledge can help us in our jobs. With every job, I think about those observations. Heck, I think about those even more than that. 

One of his observations is the 10% rule. I could be wrong about this but my recollection is as follows. He said in any endeavor--whether it's in business, industry, war, education, sports--10% of the people involved are the true leaders influencing events and changing the world. The rest help but don't really matter much. I'll take advertising as an example. All those commercials you all like? Well, really only about a handful of people in the whole country do them. In advertising, there are only four or five agencies who are doing really fun and creative work. Within those agencies, there are only four or five people that really stand out. For an industry that literally has thousands of people working in it, there are really only a handful of people who are consistently doing the work you like and notice. With some exceptions, most everyone else is doing the stuff you don't like so much. In the show Mad Men, a very accurate recreation of advertising at the start of its greatest era, the only two doing the work and doing it well are Don Draper and Peggy. Everyone else is replaceable. The 10% rule.

This also applies to the world of doctors. I know. We are conditioned to trust our doctors, that they know the big words and all the complex biology. But I have found, as have most everyone else in my predicament, that the 10% rule applies. There are the leaders and then every doc is sort of medical wall paper to me. This comes up because I heard some bad news this week. Carrie Seanor's cousin died from lymphoma this spring. And he didn't have to. Throughout the year, Carrie would talk to me about him and I would get visibly upset as I heard what his docs were offering him as help. Definitely unfair to put Carrie in that situation but she's seen me worse. Anyway, Carrie's answer was always, well, he's at a good hospital and they sound like they are very qualified and have done this before. And that's sort of the myth of docs. Her cousin was getting bad advice. I could see he was getting bad advice because I dealt with docs who knew much more. But this myth about the sanctity of what docs know and do says that there the 10% rule doesn't apply. But it does. It's a fact of the universe. 

We are very programmed to accept mediocrity in the medical profession because we assume all those years in med school give them such unquestionable insight. Deal with a med student for one hour and you realize this is not true. Doctors spend most of their careers learning about care inside the box. They don't learn about care outside the box unless they are one of the best, years later. It's simply too dangerous for their careers to think outside the box. And the problem is, the box is old. Accepted protocol for my disease is almost thirty years old. They've been doing the same thing for thirty years. You think things have changed since then? 

So my soap box tonight is to not be bashful about questioning a doc. If a doc gets all arrogant about you, go to another doc. Also, the ability to talk to a doc to work out problems should be just as important as treatment centers and services. In reality, everyone has about the same in the big cities. But they don't all have inclusive docs. 

In my case, even the 10% docs can let you down. Three weeks ago, it was planned that I would get on a treatment as soon as my wash out period ended. But that's not going to happen because the drug company says so. Even after many emails and phone calls, my team let me fall through the cracks. Now I'm left scrambling for my health in any way possible. The best my team can offer me right now is a promise to think about ways to relieve the cancer in between treatments. 

But I doubt they'll give it much thought. In my world, patients don't come first. It's a fact of life. It was clearly like that at MD Anderson. They didn't even know I relapsed even though I sent multiple emails to them and even sent them the biopsy slides. They had the physical evidence for cripes sake. One day in January the PA, good old Wendy, called and in her humorless way, scolded me for missing my six month appointment. She's my main contact at MDA and didn't even know I relapsed. 

I am a guinea pig first. That's the way it is. If a drug company doesn't want to give me the drug, even though it can save my life, it doesn't do it until it's right for them. This happens all the time. Right now there's a hodge patient named Vaig. He's in a real bad way. He needs a drug called SGN. But no matter what his docs and a lot of other people say, the drug company won't give it to them. The drug is about to be approved by the FDA and they don't want anything, any sudden death or mishap, to get in the way of years and billions in research. Vaig is a casualty. Everybody else moves on.

It's like that with patient care, too. I really have no doctor to call if I get a sniffle. My general practitioner doesn't have the experience to understand a twice relapse, failed stem cell transplant patient. The last time I went into an emergency room, the doctor told me I only had a few months to live and the best he could do is to offer two Advil to stop the swelling. Seriously. 

Oncologists don't really want to deal with you, either. To most, the non 10%, they just don't know what to do. I was flatly turned away at Northwestern. The doc, their lead hodge doctor, told me that he didn't have anything for me (besides a really risky treatment and the same one that killed Carrie's cousin). He couldn't help me. A couple of weeks later, he called and said that maybe the Mayo clinic could help me with something. A couple of weeks later. He casually called. What does he think I was doing in those two weeks? Waiting to die?

Luckily I've planned of a way to stand up and be counted. I'm a guinea pig. Okay fine. But there aren't a lot out there like me. You need me. So if you, the drug company, want to dick me over, fine. If you the doctor aren't willing to fight for me with the drug company, okay. I'll just go to another trial and take another drug. 

I called the Mayo clinic and am awaiting word to see if I can get into their drug trial. In the meantime, I emailed my team in New York and told them, "The first treatment center to put a drug in my mouth or in my veins wins the Michael Herlehy is Human Guinea Pig Sweepstakes". No word on whether they thought it was funny. I'm funny but I'm certainly not in the top 10%.

What are you thinking?

I thought I'd take this time to answer a couple of questions that are usually on people's minds when talking to me.

The first is, "When is this jerk off going to die?" Okay, you probably frame it quite differently. More like, "How long does he have to live? He looks like death already. And doesn't he have another hat?"I'm just going to focus on the first question, which is sort of funny from my point of view because most people certainly wonder about how long I have to live but don't think it's right to ask and of those that do ask, they never get it out very smoothly. 

The answer that some docs will give is I generally have anywhere between 1-3 years from the time of relapse. However, because I relapsed within six months of my stem cell transplant, that changes things a little. One study showed that of these patients, half die before making it the other six months in the year. I didn't die. My year anniversary was June 21 or June 18th. My wife knows. I don't remember much from that time. So I didn't die but I do have an aggressive form of cancer and that means it could turn on me at any time. To sum up, the answer is one day to three years left of life and no I don't have very many hats that fit my head right. 

By the way, that's incorrect information. While I barely got a C in stats class at Texas, I can say with certainty that statistics are only snapshots and, most importantly, outdated ones. A stat is past due by its nature. Three years ago, almost all of the drugs that are now in clinical trials weren't available. So patients got sicker quicker and died with little to help them other than traditional chemo. Now the new drugs are around.

The second question is one everyone asks and don't stutter about. That is, "How am I doing?" Well, not the best. The cancer is clearly spreading and making things uncomfortable. Worse yet, relief is not in sight. I just heard from my team in New York that the drug company won't let me take the treatment until September. The team is still trying but it doesn't look likely. I'm a little peeved at my team too but I'll get into that in my next post.

After getting mad, I decided to get even. Ya see, while I can barely walk a flight of stairs and look like Hume Cronin's Grandfather, I am in high demand. Per the statistics above, there aren't a lot of me alive. Maybe about fifty people. That means there aren't a lot of people to take part in a drug company's study. I'm a hot commodity. So I decided that if the drug company can't make it sooner, they won't get me at all. I called the Mayo Clinic and am now waiting to see if I can get on one of their trials. They haven't called me back. I'll keep you posted.

Needless to say, this new chain of events has made me a little anxious, worried, more uncomfortable, more sick and flighty. That's a long time for this disease to go unchecked. I need to get something in me to at least slow this down. I had to wait before the last trial and my nodes grew. They, in fact, became the nodes that got me kicked off the trial as they continued to grow while the older ones stablized.

Those are my answers. But you can keep asking them if you want. I don't mind. 

Friday, July 30, 2010

The quote is from Bono. The rest is from me. Bono writes better.

"And you give yourself away.
And you give yourself away.
And you give.
And you give.
And you give yourself away.
My hands are tied.
The body bruise she got me with.
Nothing win and nothing left to lose.
With or without you.
Without or without. I can't live with or without you."

I think I'm going to become a drug addict. For a variety of reasons, the doc upgraded my supply from Hydrocodone to Oxycontin. Much more powerful and fun to boot. Plus, he gave me lots and lots. 

The cancer is spreading through my collarbone area and inside my chest. I'd say it's 1/3 of the real estate now. So there's the pain of moving muscles and banging against bones. That's very uncomfortable and it's a bad pain. Cancer has it's style of pain. It's very ugly. The pain after you work out, well, that's a nice pain. While it hurts, it feels very right. Cancer feels very surreal, unatural and alien. Like a car crash.

I'm a side sleeper. Well, I used to be. Can't really do it well anymore because the nodes choke off my air supply. Are you a side sleeper? I remember in high school or college, someone did a report of the psycology of how you sleep. I guess the best is to be a tummy sleeper as you have the attitude of taking on the world. The worse, according to this and my memory, is to be one of those curled up and rolled into a ball sleeper as you may be very insecure and just want to go back into the womb. All you back sleepers don't get a break, either. I'm not sure why. I only paid attention in class about 60% of the time. 

I'm also getting over another bout of shingles. This left even more fine-looking marks on my belly and back. A few times doctors have asked me to take off my shirt and sometime after, they make some kind of comment like, "Oh, well, um...I see, ah, you've had some work done." It's a moment of power for me. I hope you understand and forgive the temporary arrogance but how often do you make a doctor stutter? Usually they know everything. Or at least they want to make you think they know everything. This when I got 'em.

Also, the Hodge itch is back. This is only relegated to Hodge patients. Doctors have some kind of medical reason but basically it comes when the patient has reached a point of "widespread disease". Soon, I'll be getting night sweats and weight loss and the disease will pick up pace. But the Hodge itch is nasty-bad all on its own. It's like getting the worst mosquito bite and it's all over your body. You just itch and itch. And you start to sweat because you itch so much. It's crazy. Quite frankly, I think it's one of the worst parts of having cancer. They give me some anti itching drugs but it only sort of helps.

And I think they know that. At this point, I achieve permanent name your own drug, we'll get it status. The biggest benefit to oxycontine is my body feels warmer, so I'm in a better mood. So instead of fighting the pain and itch, I feel like I'm in a hot tub only without the hot ladies. Not that I would do anything with the hot ladies. We have four girls in the Herlehy household so my perspective on the softer sex has certainly changed through time. It's taken all the fun out of thinking about me in a hot tub of hot ladies. In my twenties I would have had many naughty thoughts that may or may not have included midgets. Now I think it would be really, really exciting to talk about, well, anything because we just love to talk.

Now the doc doesn't just give me a few oxycontine and a warning to be careful. I get a big old load of them and no warning at all. A drug dealer couldn't be more welcoming. I've even said a few things about not wanting to get addicted and they don't even look up from their pad. Not even a word. What has this country come to? 

In fact, this is clearly one of the benefits to having cancer.  Any drug, you name it, I can get it no questions asked. The moment I start complaining about anything, the doc (or most likely an assistant) takes out the pad and starts writing scripts--that's scripts, plural. This goes for every single doctor I've ever had. At first I refused many drugs. The first few times I had my first chemos, I never took anti-nausea drugs until I was ready to puke. Now, no way. If I'm on this trip, I'm going to enjoy the view. Yes, some of you may be a little disappointed in this. But hey, I can't drink any more. 

So yes, I have a difficult few weeks coming up. My disease is progressing to the really dangerous stage, at a faster pace and I'm taking nothing to stop it. But I can feel good about it if I feel like popping a few yummy oxies. 

One last note. Sorry to many of you who have wanted to get together in the last two weeks. The shingles did a number on me again. Then the itching started up while in the throws of shingles. So I had a hard time doing anything. I'm sorry. I mean no disrespect and get bummed thinking about a lost lunch or two. My hands are tied. The body bruise she got me with.

Thanks for offering anyway. Have fun with your summers. If you get a chance and feel up to it, please feel free to drop a line. I really enjoy hearing from all of you. that's another benefit of cancer. It makes you connect and reconnect with friends. Even the ones who can't speak much English. It almost makes it all worth it. Almost.

Saturday, July 24, 2010

Going deep

I'm not working at Tom, Dick and Harry very much at all these days. So the absence has given me a little perspective on my experience there. 

I remember the best piece of advice I had ever gotten came from a man from India. My friend Sonya Grewal (who, coincidentally, is recovering from her own war with cancer recently) was getting married to this great guy, Mark. So her parents were in town for the wedding and reception. They lived in India and are Indian. Her dad also owned a very successful company. When I met him, it was literally the first week TDH was in business. Before that time and for many months afterwards, the three of us founders would ask anyone who had experience starting up a company for advice. People responded with very good, insightful words of wisdom. But not Sonya's dad. He just said, "Work hard and everything will be fine." Then he went on with another conversation as if to act like it was a no-brainer. 

To this day, it was the best advice I had ever gotten about owning a business. When we started, we had everything going against us. First, we were three boneheads who knew very, very little about anything other than football trivia. Still David's not the best at football trivia, but I digress. We were also starting a business in what was then one of the worst recessions in decades. And finally we were in a business that had other like-companies, tens of thousands of companies that were selling and saying the exact same things we were. But we worked unbelievably hard and somehow, it came out alright. Today, that's the advice I would give to anyone thinking of starting their own business. Work hard and everything will be fine. But you gotta work damn hard.

The second best thing I learned out of TDH is not to be afraid to go deep. This is yet another sports reference. In football, throwing deep holds high risks and high rewards. You either get sacked or score a touchdown. The key is to assess the situation. See if the timing is right, the conditions are favorable and make sure you have a back-up plan if things don't go well. We went deep at TDH because we were leaving a pretty safe gig and trading it in for something that was anything but. At least that's what I thought. It actually turned out to be just the opposite. Owning your own company is actually safer than working for a company. After all, you know when the money runs out when you own the company. When you're an employee, you can get popped at any time and for any reason.

One of my biggest heroes in life is Abraham Lincoln. I've read a handful of books about him. The best by far is Doris Kearns Goodwin's. It's an unbelievable read. Not as good as McCollum's book on John Adams but we all can't be perfect. I was once awed by Lincoln's clear, concise and still creative writing style. I was blown away at his ability to overcome hatred and forgive. And of course, there was his brilliant mind. But after reading the Kearns book, I was most impressed with his timing. People today think Lincoln was a radical but actually he was very, very centrist. And that means everybody hated him no matter what he did. This reminds me of a certain president now but I'm not going to get too political here, not since both my father, father in-law, partners and close family friends are all pretty close to being tea-party marchers. 

But the way Lincoln handled everyone was he waited for the right time to make his move. He waited years to free the slaves. He waited months to fire incompetent generals. He even waited until the right time to be nominated president. Time after time, he waited for the right time to promote his agenda and it was the timing and not necessarily anything he said that got it done. He had a genius understanding of the importance of timing.

It is with this inspiration that I tell you all of my next move. The fine Dr. O'Connor has indeed taken me off my current treatment as it isn't working at all now. We talked for more than an hour about what to do next. Currently, there are about twelve different drug treatment options available to me. All but two of them have about the same chance of any success, which is about 30%. Just so you know, the drug I was on had a slightly higher rate and even though the cancer grew while I was taking it, I am considered a success since it grew under the scientifically accepted rate. It was only supposed to last five months, I went almost double that time.

With basically a 30% chance of doing anything remotely positive, I wasn't exactly thrilled with my choices. Neither was Dr. O. So after much discussion, we realized I was left with two drug treatments that could have better success rates than the 30% drugs but both were high risk and high rewards. 

The first is a treatment only available to me in Europe. I would have to live in Pisa for about a month to get to my first infusion and then come back periodically for other infusions, maybe a couple more months. That seemed like a big pain to me right now. Heck, I never even told my wife about this as I could just see the conversation, "Yeah, it's in Pisa, Italy. You know, the place with the leaning tower. I'd have to find a plane ticket, a reasonable place to live and oh, I'd have to leave you here with three kids during the busiest time of your life for a month." She'd do it but I don't know if it was right. 

Like Lincoln, I have to pay particular attention to timing. It didn't seem like the right time now. But it could be the right time in a couple of months. But the key is I can't wait too long. If I get too sick, I won't be able to make the flight or be able to take care of myself for long.

Also, this choice is high risk on a medical basis. For some reason, the only time they tried a similar treatment here in the US, it failed miserably. It's done well in Italy but it hasn't been tried on a lot of patients and hasn't been for a very long time. This is a new type of therapy that involves sending radiation into your body instead of chemo. It's very new. Promising but new. I'd have to go a long way for a promise.

The other high risk/high reward option is even more high risk. I would literally be the first human being to ever try it as a Hodgkin's patient. The drug did really well in the laboratory with other cancers. It works like my last drug, SAHA, in that it kills the cells that help the cancer cells live. Only this cell is a little "further downstream." This treatment is thought to be a good Hodge drug because the cell it kills is very popular with Hodgers. They got more of them than other cancer patients. So far it's doing well with other cancer patients. Dr. O. said he's only seen one other drug to seemingly have better promise and that is the ever elusive and much ballyhood SGN-35. As I mentioned in other posts, I can't get that until the first quarter of the new year at the earliest. But even that one has many, bad, bad side effects.

The thinking here is if this drug does work, chances are it will work better than what I just finished getting, which is really only slowing growth and not really killing growth. If it doesn't work, we should know faster than other drugs since in labs, it has shown to work very quickly. If this happens I may have a better chance at survival because I can hopefully catch it quicker. Because I'll be on it for at least a couple of months, I'll also have a better chance to switch to a couple other drugs that are out there because I will be further removed from similar treatments in the past. For example, I could switch to a more traditional but painful chemo and have a better chance at survival because I will have had almost a year and one half break from chemo. 

And there's always the Europe plan. That would actually be my first choice if I'm still feeling up to it. Give this new drug a short shot and then study up on some Italian.

So that's the deal, complete with a mixed metaphor of Abraham Lincoln and football. As always, I would love to hear your thoughts. I especially enjoy my Asian brethren even when it is translated by Reed Martin. 

One other thing, expect to see a lot more of these posts in the next month. The doc gave me a steroid to help stem the swelling on the cancer while I'm in between trials. The steroid keeps me up at night. 

The good news is, the warewolves don't howl any more. I'm not afraid. I've been through hell. I've seen it. It's no big deal. Sort of like going to the House on the Rock in Wisconsin. It's there. It hurts for a while. Then you're done. 

Thursday, July 8, 2010

The Bizzarro World of Cancer

Good is bad in cancer. When you feel good, sometimes it's a bad sign. When you feel bad, on the other hand, sometimes that's good because the treatment you're on is killing cells in your body.

Lately I've been feeling good, which is bad. I saw Dr. O in New York and he said that my scans were bad, which is bad. Even though I've been feeling stronger, less sick and have more energy, my cancer is too. The treatment that I'm currently on isn't working but since there's not a lot for me out there, we decided to give it one more shot.

So the coming months look like this: 

I'll continue on this treatment until mid August. The roughly twelve tumors that I have in my body will have grown during that time. Right now, the largest is three centimeters. Growing at the same rate, it should be five to six centimeters in August. This tumor is right below my right lung. The danger is that it infiltrates the lung. It could do it any time without any rhyme or reason. Cancer does what it pleases. Other tumors will have grown too but they should range from about two to four centimeters. Many of these are located on my neck and shoulder. I'll start looking a little like Elephant Man.

In mid August, I will need to have a "wash out" period of one month where I can't take any chemotherapy drugs and have to wait for my body to completely wash out the current chemo. The cancer will be able to grow unchecked here. About the only thing I can do is take prednizone, a drug that has messed my brain up pretty good in the past. Expect a lot of late night blogging and emails to occur as it keeps people from sleep. This drug is only a short term remedy and keeps the cancer from getting too wacky.

By mid September, if I'm feeling up to it and if the cancer hasn't advanced too far, I will go on another clinical trial treatment. If I'm lucky, I'll take to this and the tumors will stop growing or even reduce. But the chances of that happening are less than fifty fifty. If the treatment doesn't work, we'll know by about November and I'll probably end up taking some high dose traditional chemotherapy to try to bang back the tumors for a short period. 

The goal right now is to stay alive long enough to reach the new year. At that time, an effective treatment may become available on the market as it is scheduled to be approved by the FDA in the first quarter. That drug has many debilitating side effects but has shown to be 70% effective for Hodge patients like myself. It only lasts about five months before side effects become too unbearable and dangerous or the drug stops working. But that would take me past my birthday and into a new baseball season. 

Wednesday, May 12, 2010

About Kate

Kate Levin had the office next to mine at C-K. Every day at about the same time I would hear her call her kids. She'd be so loud and happy listening to how their day went. Afterwards on occasion, she would come into my office and we'd talk about our kids, almost never work. C-K was a very political place but Kate stayed away from the drama. She got her work done with a passion and the only other thing she wanted to talk about were kids. You could tell that she was conflicted with what I would imagine many women feel: that is, a need for work and a bigger love for her kids.

Kate was a creative director and so she was sort of my boss. She was also a great writer. She came from New York. You know those really entertaining IBM commercials? Kate did many of them including one of the most famous about Christmas morning. Sometimes she annoyed me because she had this new way of writing headlines that was shorter and with more edge. But she was right. I needed to write shorter and with more edge. 

I became an admirer of hers forever one day when we had layoffs. A friend of mine got the axe. Kate was hard on him in the past so I just assumed that she had a hand in firing him. But she didn't. When she found out, she was really, really crushed and actually tried to stop it after the fact. Kate believed she could get the best out of everyone. Instead of not being fond of this writer, she actually liked him because he worked hard. I realized then that no matter how tough Kate was and how much she stayed away from the drama at work, she really cared about her people. 

And boy was she tough. Advertising is a real man's world. Still is today no matter what you may hear from agency heads. So to get anywhere near Kate's position, she needed thick skin and a steel back because a lot of people would be trying desperately to stab at it. 

Kate died today at just before three pm. She fought cancer for a long, long time. I can't even count how many years, it was that long. And she had it bad. I think I've learned a few things about cancer but I can't even pronounce what she had. I can't even describe it. All I know is it was bad and in a lot of places including her brain for a while. I mean, she came back from having cancer in her brain. How is that for tough?

When I was really in a dark place with my second relapse, I called her. She was going to be the one to understand. And because of where she came, way out of the darkness many times, she was going to be the one to lend me that help up. Like myself, she didn't talk to people much so I talked to her husband Rob and heard her many comments in the background. They both offered to do lunch sometime and repeated that offer the last time I emailed them both. I felt better after talking to them. I wish I feel that way right now. 

Kate leaves behind many memories and two beautiful girls. One plays hockey. Tough like her mother. I hope today, sitting here as McKenna gets ready for bed, Maddie sleeps, my wife watching TV and Conner taking a shower that they know how hard cancer people try to stay alive. I hope someway, somehow, it's Christmas morning to Kate. She deserves nothing less. This disease sucks. 


Sunday, May 9, 2010

Passing it on.

Once again, I'd like to thank everyone for their support the last couple of weeks. My shingles is still around but definitely manageable. I'm up and about doing a lot of mulching.

It's true from what Todd had said. I had the pleasure of seeing our two kids play baseball together. It's actually very strange to come so far. I met Todd in college our freshman years. Who would think that we'd be so old and normal and watching our own kids play ball against each other. Todd's boy got a hit off Conner. Even though he did, it was an enjoyable and fascinating moment. Conner didn't know until after the game. I didn't want to make him too nervous. 

I go in for more tests in a couple of weeks. From what I can feel, the nodes on my left neck are fusing together. They're small individually but together they form a pretty big lump. A "bulky mass" is starting. I'm not sure what the doc will do. You can see them sticking out of my neck now. I try to wear shirts that cover it up. I don't want the kids staring at it. 

My hair keeps falling out. I'm sick of hats but I really have no choice since the hair is coming out unevenly. I refuse to shave it all off. This is the last I'll probably ever see of my hair so I'd like to keep it around for as long as possible. Even if it is covered by a hat.

I'm really enjoying the days here and hating the nights. I wake up late morning, see Maddie, take about an hour to get used to the world and the weirdness of my body and then get on with it. Usually, Sherri and I do something around the house. Lots of mulch is involved. At night, I have to take the pills and I don't feel too good. Toward the end of the night and into the morning, such as now, it's pretty ugly in my head. 

Tonight I made the mistake of feeling the nodes on my left side. If I don't feel around, I'm okay because I pretend to just have a disease. When I feel around the disease becomes more menacing. I rarely feel around but tonight I did. It's actually a little difficult not feeling it. When I take a shower I just don't wash that part. If there's an itch, I pull on my shirt. I don't even shave in that direction. 

I haven't posted here because quite frankly, nothing new has gone on. But I did really enjoy seeing Todd and wanted to write about it. Sometimes you can spot milestones in your life even while they happen. Most of the time, you probably don't appreciate it for what it is. But then I really did. I have three kids and all are great. They have their own personalities and are good people. A couple of weeks ago, I got to see a friend of mine with his own kid and I can see how we all pass it on. Todd is a really ice person who will do so much for a friend. His son recognized me even though he hadn't seen me in eight years or so. Amazing. 

When I was younger, probably as a freshman in college, I thought life was about so much more. I wanted to change so much. But now I'm okay with changing my world and making my world better. No one person changes the world. Nobody changes a lot. But a lot of people change a little. And then they pass it on. 

Thursday, April 29, 2010

Phew. That was close.

If I haven't gotten back to you over the last week or so, I am very sorry. I went on lock down again. Lock down for me has nothing to do with prisons. It's when I get really sick. This time, my shingles came back and I got a cold at the same time. I'm still not exceptionally well but am working on it. At least I think it's a cold. When talking to Dr. O'Connor today, he suddenly became quiet and serious. He told me it's either a respiratory infection or my nodes around my lungs. If it's the nodes around my lungs, well, Sherri might want to start looking for another life mate as I'll be cooked for sure. But I doubt it. I'm coughing up plenty of phlegm and it's not the usual blood brown that accompanies bad cancer phlegm. I think the good doctor is just being cautious. So any way, even being a cold, I was pretty sick. The shingles really knocks me good. I'll get better in the next couple of days. That means Shamus, Pat, Rossi and Kevin Kucharski should be expecting some bothersome contact from me. Also, to Todd's step daughter, thanks for the note. It seems as if Todd hasn't changed much. Which is a good thing. 

Thursday, March 25, 2010

Life as an eighty year old

Anne Sexton once wrote, "In a dream, you are never eighty." Or maybe it was Sean Hannity. Anyway, it's great insight. I would also like to apply it to what people think of me. You may remember me as being a really annoying, self-centered forty-something with graying hair. Healthy but still really annoying. In a way that's wonderful. I would love to be thought of like that. 

But that person is gone. Now, I am just me. Some of it is hard to look at. My hair is almost all gone now. What's left is white and ragged. My face looks worn. You can see what I've been through by looking at my expression. It's hard to smile even when I am happy. And I am still happy. Also, I'm very skinny. I struggle to keep up a weight of about 160 pounds. When I started this fight I was about 185-190, depending on whether I had a donut before weigh-in. 

Sherri thinks that some of our relationships with friends and neighbors have suffered. We both think that it's hard for people to handle. What do you say to me? So, how is cancer? We think some people just generally stay clear. 

Of those many kind-hearted people who have asked to come over or to just meet up, I really appreciate it. But keep in mind it's hard for me to say yes. You remember me as an annoying forty-year old. When you see me now, you will only see me. And, on my end, I can track the adjustment you make in your head when you look at me. Your mind goes from, "Wow he's changed." to "Man, he looks bad." to "Hide the fact that I said he looks bad. I think I'm going to hell for thinking that." Once again, it's okay. Even if you don't make that adjustment, I think you have or you will sometime later on. When you're driving away, you'll say, "Geez, he looks like crap." 

Kids aren't so sophisticated. Mostly I see it in Conner's friends, probably because boys, like men, are even less sophisticated than women-folks. An encounter usually goes like this:
Kid and Conner come up to me. Kid is looking down.
Kid says hi to me.
Kid has weird look on his face as he looks at me.
Kid looks scared. He sees a monster or at least something he's never dealt with before.
Conner sees none of this. 
Conner makes a joke or comment.
Kid gets away in a hurry.
I think to myself, "God bless Conner." Either he's accepted the fact that his dad isn't like other dads--strong, somewhat handsome, not so ashen. Or he doesn't see it. Either way, it is to be admired. Some people say I'm strong. Try being a pre-teen and you have to introduce your friends to your dad, the sunken-eyed, ashen-faced circus freak. 

I blame nobody for avoiding me or making a face or anything. It's only cancer's fault. In fact, I'll even give you some tips on how to act with me. I might be different from other people with cancer so only apply this to me.

First, ask me anything. What does it feel like? Can I touch it? Is your poop still backed up? Anything. Since I'm dealing with it 24/7, I have a lot in me and would love to pour some out. Just like my poop.

Second, it's okay if you say I look like shit. I do. You're just being honest. Although some of you would disagree, I never really cared what I looked like as long as I didn't look too much like a dork. Average was fine with me. Got me through college. So I don't feel bad for looking so bad. What I feel bad about centers around my kids and wife. I don't want them to think they live with a Thing. I don't want Conner to hate me for being sick. Many of us admire our dads. It's hard to admire a guy who lays around in a blanket all day.

Third, understand my body changes on a minute to minute basis. I might feel well and then a node tells me he's still there, alive and well. So I have these tics now. Also, I may get tired and cancel out on something at the last minute. It's weird. I hit these walls. One second I'm fine and then wham, I just want to lay and stare.

Fourth, take it easy on my wife and kids. They live with me. It's my wife's birthday today. Every day I wish I could give her a normal husband. But today I had to settle for candy, a gift card and a phone charger. Romantic, right? She is so very strong. She's still singing every day. I feel it now inside of me. 

Finally, don't worry about keeping my spirits up. If you're reading this, you have become for some unknown reason, a friend. I don't know why you befriended me. But you did. Every day I wish for the days when we were both healthy and talked about nothing. Feel free to talk about nothing with me. Don't worry about how I feel. Sometimes I feel like shit. I won't tell you that because I don't see the point in bumming us both out. I want you to feel good. That way one of us can feel good. 

Friday, March 19, 2010

Coming Up For Air

One of my favorite books from one of my favorite authors is, "Down and Out from Paris to London." It's by George Orwell. He literally gave all his money away to live as a bum in Paris and London to really see what it was like. He had to give his money away because he wanted the experience to be genuine. 

The title of this blog isn't from that book. It's from another book Orwell wrote that was really boring. It was so boring I can't even remember what it was about. Still, he was a terrific writer.

I spent the last two months trying to stay alive. I wasn't very well. I didn't know it then. When you're really sick, you don't know it. Only later can you look back and say, "Whew. That was close." The shingles really had me. Plus the treatment exhausted me.

Yesterday I saw my doc in New York to start another round of treatments. He was shocked when I told him what was going on with me. I said I'd wake up around noon and just tried to get one thing done in a day. He nodded and went on to tell me about men. Most men are babies. They can't take pain like women. But some men aren't. To their detriment. Some men will suffer through pain because they are ashamed and/or want to beat the pain. But they shouldn't do that. Doc told me that there are other treatments out there and if I am still having a hard time doing anything during the day then we can switch treatments. I told him that I was just happy to be alive even if I was running at about one third speed. He said that there is a quality of life issue and patients need to decide individually if living at one third speed is better than trying to live life better. He didn't think I should be like this at this point.

The thought was to give my current treatment three more weeks. If I'm still tired and nauseous then we would switch treatments. We might switch anyway. The lumps in my right collar bone have fused together forming one big mass. So the cancer is growing. However, the big issue is how fast it's growing. If it's a lot then I'm off to another drug.

I'm still in a lot of pain and am nauseous and tired but now I have a whole list of even more drugs to counter act these feelings. It's too early to tell if they're working. You'll know by my radio silence if they aren't. In one day I can very easily down close to thirty pills. Let's take an inventory, shall we:

Colace so I can poop
Valtrex so I can get rid of Shingles
Hydrocodone for pain (two times a day)
Aleve for sore nodes (two times a day)
Ritalin for energy (two times a day)
Kytril for nausea (two times a day)
Ativan for nausea
2 pills of Benedryl for the Hodge Itch
12 pills for treatment
4 pills to fight cancer
An anti-acid to help with digestion

Friday, February 12, 2010

How I feel

This used to be a fun house.
But now it's full of evil clowns.

Wednesday, February 10, 2010

The joys of Shingles

I have Shingles. They say they're painful but to be frank, I really can't tell. My body is already killing me from the chemo and cancer. I've had shooting pains and cramps throughout my body for two years, I really don't believe shingles is going to be that god-awful. 

So instead of looking it this as another setback, I see this as another chance to enjoy some vicodin. It's not every day that you get to bedazzle your brain with some powerful-bad drugs that don't make you puke. In fact, I wrote a poem about it. It goes something like this:

Oh vicadin, you put me in a lovely trance.
Just a small swallow 
And I will wallow
With this sweet, sweet drug romance.

Monday, February 8, 2010

Mutts, my grandmother and Cancun

My dog is a mutt. By looking at her you'll notice that she has some Labrador Retriever in her and some German Shepard. But with the way she acts, you'd think she even has a little greyhound. She loves to run around. Send her outside and she'll run in in a long loop that covers the back yard for many many minutes and until she gets pooped.  She's very fast, too. 

I'll never forget the last time I chased her. It was in September. I was still recovering from my stem cell transplant but I had enough energy to run a few laps with her. That day I don't think I had much cancer in me. But that was the last day. It was beautiful running with her. I had spent a year in Houston getting a new blood system and was finally free on a cloudless and warm September day. Before that year, I had chemo treatments that lasted eight months followed by the worst type of relapse filled with itching and chest pains. Two years of treatment and pain all out of me in the backyard as I ran like a maniac after a stupid dog. 

I felt wonderful. That was a long time ago. This is the third year that I'm fighting for my life. Every day I wake up and prepare myself for the aches, the cramps, the nausea, the vomitting, the headaches, the shooting pains, the obstructed bowels, the blood in my nose and lungs and the fatigue. God, I am so, so tired. I can't climb a flight of stairs now without being so very tired. There's nothing wrong with me. There is no medical term for a body that's just pooped.

There is a drug out there that can help me. I can get relief for about five months before the cancer comes back or the really nasty side effects begin. But that was my back-up. To use the military analogy, this drug is my reserve troops. When it looks bad, then I always have that drug. You don't want to use this back up because it's so powerful that when the cancer comes back, and it always does, it really comes back balls out. And then you options to fight it. 

Originally, Dr. O'Connor set me out on this path of waiting to use these reserve troops. Let's not use SGN right away. Let's use some other drugs to soften the cancer first and see how long we can go before we have to use it. Heck, we could go years without even considering it.

Dr. O'Connor changed his mind last week. He said I really need a couple of wins. I have a 5 cm mass in my chest now. That along with more than seven cancerous lymph nodes across my collarbones and upper chest. I have a lot of cancer in me. 

About ten years ago, I went to see my Grandmother with a baby Conner in tow. This was her first Great Grandchild and all during the pregnancy, she begged me to come by with him as soon as I could so she could see her Great Grandchild before she died. She had ovarian cancer. But when I saw her it wasn't what I expected. She was very sick. So sick that she really couldn't care about Conner. This isn't a criticism of her at all. I understand it. I have a beautiful baby girl. But I can't enjoy her. I am sick and it has consumed me. I think of little else because I can do little else. I have become a benchwarmer in my life. I watch what goes on now from the sidelines. I sit and watch. Most of the time I don't even speak. That would be a pain because I'd have to breath and smile or something. Way, way too hard. I know how my grandmother felt. You just get so darn tired.

Last night I dreamt that I picked up my friend Scott Corirossi at the airport in Cancun. I had a house there. And I was telling him how great it was to be living there. I don't understand why because Cancun would really annoy me in real life. Rossi acted like I wasn't there. That happens now in most of my dreams. People are acting like I'm not there. 

Thursday, February 4, 2010

She said it better

Saturday, January 23, 2010

The secret to a really good kick.

I have to admit and I think I've said it even on this blog before, but I have an awfully good kick. A "kick" is a cross country term. It describes the last half mile or so of a race, including the sprint to the finish. In fact, I never lost to a runner who was within ten yards of me when I started the kick. 

Now, I'd like to think it was because I was super fast but I really wasn't. I just knew a secret or two. One of the big ones is to never flinch. The first runner to flinch is the one that losses 100% of the time. They let up for even a split second. That's all it takes. The better runner focuses, keeps his head forward and down and believes he's getting there first. All those hollywood finishes in races where a guy dives over the finish line just ahead of the other person? You don't need the theatrics. Just keep your head down.

I am trying not to flinch now. We are setting upon the last part of my treatment schedule. I have four days left. The last two times I was at this point, my body started to break down. This time it's just as bad or worse. I've already puked from the treatment and had to take a break for one day. Another situation like that and I'm liable to get off the trial.

But man it's hard. Counting side effect pills, I think I down about twenty suckers a day. Most of them are horse pills. Not pony pills. Big, Man O War horses. The type my step father bets on. For part of the day I keep my mouth shut hard. If I open it, stuff will surely come out. 

I'm also breaking down the other, less pleasant way again. My butt feels like I spent a lost night at Mardi Gras in New Orleans or Rio. Blood is the liquid of choice here when stuff does come out. 

The good news is I'm not so tired any more. I can spend the day with the kids although I need breaks and am very, very little help with Mad Dog. I am hopeful that I can get these other issues under control somehow. 

Bekah is a brave soul and a fellow hodge dogder who was on the same medicine that I'm now taking and saw a whole 40% reduction of her tumors. She has had to stop the trial because the side effects were too much for her tiny frame and is having a hard time of it now. Please keep her in your thoughts if you can. I will. I believe it's still possible to keep my head down, focus, think of her and never, ever flinch.

Tuesday, January 19, 2010

Bodily rejection

Things have taken a turn for the worse. Puked a lot tonight after trying to get through the pills. I just can't keep them in me. Either I puke them out or they go out of me pretty quickly the ah, more unpleasant and stinkier route. And I consider myself a pretty good pill taker. Will try again tomorrow. 

Sunday, January 17, 2010

Cancer, You-Betcha!

Greetings from Rochester, Minnesota. In just a couple of days I went from New York, the city that never sleeps, to the city that goes to bed around 7:30. Ya-heya. It's cold up here but the folks are warm and the buffets are many. The lead story in tonight's news is about a guy who exposed himself at the Days Inn. Apparently he's done this type of thing before. This is obviously a very disturbed man. Not because he exposes himself. Hey if he's proud of his junk, why not show it off, right? No he's sick because it's cold as hell. Why would any sane person get nakie in this weather even if it is just for a second or two? 

I will be here for the next couple of days. It all depends on what tests I agree to. Tomorrow I meet with some hot-shot doctor. He'll tell me I'm sick, look at my scans and we'll go through the usual patient history. I got it all down pretty good now. 

As for my tests, thank you all for sending your best vibes and inquiries. The cancer is still there and growing at a slow pace. My doc said that is to be expected for some patients because this stuff works at a slower pace than typical chemo. We talked for about a half hour just on side effects because, well, if you can name a bodily function, I can tell you that my body has malfunctioned with it in the last couple of weeks. Things stablized after I got off the meds for a week, though. The big issues are my nausea, itching and high liver function. The doctor kept asking me if I was drinking, like he didn't believe me. I don't do drinking any more. I'm buzzed for half the day anyway. Why would I drink to get even more buzzed? I just want a dose of reality. But with my past, I wouldn't be surprised one bit if my liver is a little sensitive.

So the good and bad news is I have to stay on the meds for another couple of months. We're still trying to work out how I can avoid the inevitable headache and nausea. The doc suggested crushing the sixteen pills I have to take and mixing it into some kind of meal, like a stew. Unfortunately, the Mariott only has about five items on the room service menu. None are stew. I had the walleye. When in Rome. It was huge. I could only finish about half of it and felt really bad about it as I watched the news of starving people in Haiti. Ya know, I've been to Haiti. We took the kids to this private beach as a part of our cruise. The kids couldn't swim much because of the jellyfish. So that's what they think of Haiti--jellyfish.

I don't really know what to do with myself here in the Mariott. I would usually get the headache to go away at home by playing with the kids or picking up Mad Dog. She's does this cool thing where she grabs my finger. I pretend that she's squeezing the badness out for me. 

Enclosed are some visual aids. I know there are a lot of art directors who try to read this but never get through it because there are so many hard words. So I will try to include my picts. There is one of a ceramic bird type of thing at the Rochester airport. Small midwestern towns love ceramic animals. Another is the most famous landmark here, which is a corn water tower that you can see driving into the city. The other pick is of Mad Dog taking a bath. She's probably doing that right now. 

Oh one update. The second lead story in the news is some teenagers blew up a fish house out on one of the lakes here. Really. Blew up a fish house. I'm beginning to love it here. 

Wednesday, January 13, 2010

Am I OK?

That's a good question. I don't really know. I had my tests today. Tomorrow I meet with Dr. O to discuss the results and the next steps. 

I always thought that the way most people die of cancer is from the cancer. But not with this. The way most people go is actually from the treatment. Eventually the body just says, "No mas" and people end up dying from pnuemonia or some other disease. That's when you hear that this person died of "cancer-related difficulties". 

It's very understandable. The rest of my life I will have poison in my body on almost a daily basis. That's putting any body through quite a work out. One look in the mirror and the miles are starting to show. I already look like Kris Kristoferson. When my wife and I go out to lunch on occasion, I tell the waitress that she's my daughter. The waitress doesn't laugh.

Tomorrow I will be facing a bit of a catch 22 situation. If the tests are good, I stay on the drug. That means I continue to fight through every day finding minutes that ignore the feelings of nausea, pain and fatigue. If the tests are bad, I go off the trial and begin three weeks where I have to stay off of any chemo drug, in which case I will feel the effects of the cancer in my body. This is called the "wash out" period where I need to fully wash all traces of the treatment out of my body before I can start a new trial. It's tricky because you hope the cancer doesn't grow too much and pray that your body doesn't one day say "no mas". 

One note. A while back someone who once had cancer warned me of not being too heavy on this blog because it's not really helping anyone and in fact, it can have the opposite effect of really bumming a lot of good-hearted people out. You folks out there want to help but there's nothing you can do. So instead of whining on this every day I decided not to write anything at all. But many of you didn't like that situation. So I'm back and yes I will whine on occasion. I do think it's helpful to you in one respect. The next time one of your loved ones comes down with this nasty disease, you'll have a good understanding of what they're going through. And if you're tired of the whining, then don't read. Do something else. Sarah Palin is now on Fox News. That'll get you laughing again.