I raise my head up. There. That's done.

The first half of my day--

10:00 am Wake up. Feel this annoying itch. Sometimes I have a headache. My nose is running. I have a bad cough, which doesn't make much sense since I never sick and have both a runny nose and a cough at the same time. Usually one has followed the other. The itch is really the one, though. First, an electric shock shoots at random spot on my body. Right away the spot itches. I itch the spot. Another spot gets electric shock. It goes on non-stop. Decided to go back to bed for a while. Until the itch goes away.

10:30 am The itch doesn't go away. Why do I have these sharp pains? Why itch? What's up with my nose? Oh yeah, I have cancer. The tumors in my neck make it sore. I'm sore in all kids of other places too. Getting up at this late a time in the morning is embarrassing. So I figure I need to make a mad dash for the kitchen to get some breakfast.

10:40 am Lean up, ready for the mad dash.

10:45 am Still ready for that mad dash.

11:15 am Get out of bed.

11:18 am Get down stairs. Hope to God that Sherri doesn't send a text asking to pick up Maddie from the babysitter early. I see no texts.

11:22 am Throw in two waffles. Go out to the garage for a Coke Zero. Put the same waffles down again. They're much better crunchier. While waiting, send a text to Sher lying to her, telling her that I've been up for a while, feel great and have been waiting for Maddie for like an hour. What's up?

11:30 Sherri writes back that I should rest and Maddie's going to nap at the baby-sitter's house. Basically, she didn't believe anything I wrote. Smart woman. I love them smart.

11:45 Finish waffles. Prepare my daily cocktail: 2 pills to help with the itch even though it doesn't work, two pills to help with the shooting pain and these will kick in at about four o'clock but will suffice beforehand, two oxycodone that used to do wonders for all the pain now only helps marginally, one pill to keep me from getting an infection even though I probably got one, DayQuil. I down the pills first.

11:47 Back at the breakfast table. I lower my head. Too tired. Too tired for everything. Can't do this another day.

12:15 Head still down.

12:20 Pills kick in. Clean up.

12:35 Check the internet.

1:15 check my To Do list. Pick one thing. Put a new phone in the kitchen. Plan on doing that.

1:30 Going to lay down instead. Tired..

1:31 I itch.

2:00 Get ready for the babysitter and Maddie.

2:05 Babysitter arrives with a cranky Maddie.

2:10 Feed Maddie a cookie and grapes. She loves cookies. See the dog itching.

2:35 McKenna comes home. She talks to Maddie. We talk about her day. It was boring. The dog is still itching.

2:50 Sherri arrives. She immediately takes over and thanks me for watching Maddie and how I should lay down because I did a lot. This time I tell her the truth and say I didn't do anything because I had a hard time getting going. She says to lay down. She knows what I did and thankfully, somehow and someway it was enough for her.

3:00 Play with Maddie. She likes to dance. A lot. To the same song.

3:30 Tired. Go up to bed for a nap. Itching still a lot today. Try to hide itching from the dog.

3:45 Fall asleep.

4:15 The sharp pains are back. This itch, man, where did this come from? And my body is sore like I went boxing in the sun. What is wrong with me? Oh, I have cancer.

4:16 The plan is to race downstairs to get my pills. So I sit up in bed. Then I itch.

4:30 Still sitting up. Can't lift my head. I itch.

4:35 Make it to the pills. I'm out of breath.

4:45 Play with Maddie. Tell my wife how I have this huge To Do list and how I'm going to redo everything that needs to be done around the house. Think of the phone. Don't even bring it up. It's not getting done today.

5:15 Think of all the people out there ready to go home. Think about how after five was my second favorite time at the agency since I get to do work without interruptions. I'd come up for air a couple of hours later. Only one or two people are left. I'd walk around not because I wanted to see someone. I didn't want to see anyone because I just loved the sound of an empty ad agency. It's still has energy but it's so quiet.

5:16 Is dinner ready?

5:30 Dinner is ready. After dinner I lay down. Oh, and I itch. Wonder how long.

Party like a rock star at the Olive Garden

I'm getting beat to hell. The cancer is coming at me now in so many different ways that my body just can't keep up. I sleep a lot. I lay around a lot. I don't like going outside for anything. I'm out of breath most of the time.

Starting the year, I had two magic bullets--two treatments that are surefire winners. Bendamusstine is the better of the two. I took it. I can't take it any more. The other treatment is SGN. I don't think I'll last past the first treatment because its major side effect is bad nueropathy. I already have bad neuropathy. For folks in that condition, the drug puts them through ungodly pain and in some cases, paralysis.

So the cancer grows now. Very little will be able to stop it. And it is making me subhuman. The other day I spent a couple of hours itching. Now, I don't mean itching and watching TV or itching and eating. Just itching. For two hours. After that I didn't stop itching but I went on to doing other things as well.

Sherri and I got an email from my mom about our birthdays (sherri's is the 25th, the day after mine. Is that cool or what? I've never forgotten her birthday.). In the note, there was a reference to "days full of happiness" and she ends it all with, "May you have the best times of your lives." Wow. Days full of happiness. I don't understand how someone could write such a callous and clueless thing. And she's my mother. If I can get ten minutes of happiness, it's a good day. If I can get ten minutes without itching and find full happiness at the same time, well, then a celebration is in order. We're going to the Olive Garden!

44 going on 80

Happy Birthday to me. I'm 44 today but that's just a number. Clearly that's a number.

Thank you for all of your birthday wishes. I know it's been awhile since my last post. I also know I've shut a lot of people out as far as emails and stuff. In particularly Kiki and Brandy. It all got to be too much and right now it's too much.

We're all just worn out. SInce we last talked, I was taking one of only two dependable treatments out there that has shown good results in banging down the many cancerous tumors that have grown throughout my body. At the halfway point, the tumors in my chest have gone down dramatically or disappeared. But that was the last I would see of Bendamustine.

My platelets are at a very, very low level and if Dr. O'Connor were to give me bendamustine or most chemos they would kill me, So he gave me some rituxan once every week for four weeks. Rituxan is a different type of drug in that it isn't considered a traditional chemo. It is a very popular drug with non-hodgers but isn't really used with us Hodgers because we generally don't have the type of tumor this drug would kill. However, Dr. O really looked at my case and noticed that I'm actually more of a tweener. I have both the hodgkin's tumor cells and non-hodgkin's tumor cells.

But even Dr. O'Connor admitted that it's not nearly as effective as bendamustine and quite frankly, I can see, feel and touch my tumors and they're growing. They've taken over my right side. Everything is worse. My itching is bad. My chest pains are back. New tumors are popping up and really I can do very little except scratch my head. Yes, that's an itch. I go from respiratory infection to the next without a break. Last week, my wife said, "I was worried for a while there. And you me. I don't worry about a lot of things." This morning I noticed that I can't live without almost thirty pills. My life now depends on a lot of pills. And even with them, I'm in pain and in danger of dying.

I tell you, I'm just really tired of fighting. Everything is difficult. I'm heading downhill. I feel so embarassed. The cancer is even affecting my dog Nala. I itch constantly now. Every five seconds or so my body would light up with a spark and then an itch. Nobody can do anything about it. Now, my dog Nala itches all the time. She's never had any allergies. And she doesn't have fleas. But she itches.

More than anything, cancer is relentless. It keeps coming after you, your body and your senses. I beg for it to stop many times during the day. I just wish I could feel normal for an hour. I'm tired now. I'm going to sleep. I itch through my sleep. I wheeze. I cough. I twitch because of the growing tumors. And that's when I'm resting. I will post again with a clearer head. But please send me good vibers, pray, do whatever. I would appreciate that. Please don't call my wife about this. She has enough on her mind and day. She knows all of this and more. We're trying. Sorry for the typos. I'm going to bed.

I'm running out of heroes.

Kirsten died today. She was one of the refractory Hodgers that I looked to and said, "If she can do it, then I can." She was just working out only a couple of months ago and seemed to be her energetic self. She lived in Vancover and couldn't stand the fact that the Olympics were in her town, wreaking havoc on her daily life. She kept telling people to go home. She was very funny.

Kirsten found the Hodge at about the same time I found mine. But she had been through a couple more clinical trials than me in that time. That's basically what killed her. All those treatments, all that poison in your body, it just ruins things in the process of trying to make you better. Her platelets were slammed down by so many treatments that they eventually gave up on her. She went into the hospital and the staff gave her transfusions. By then it was too late. With her platelets so low, the cancer had a chance to really get ahold of her body and it did.

My plan to jump from treatment to treatment is a failure and I know it more and more every day. I now understand what Custer felt like when he took that last dip into the high grasslands of eastern Montana. It's sort of like, "Oh no. What have I done?" Luckily I have more time than Custer. Now, I have heard from some of you that my entries have become more somber. I'm sorry for that. If you don't want to feel that way and I'm making you feel that way, please stop reading this.

My daughter, McKenna, makes bracelets and hair pins out of duck tape. Yes, I spelled it right. Her tape is duck tape and you can find it at Target. It's a cheap rip off of duct tape, the big daddy of any tool chest. The bracelets go for fifty cents and the pins go for one dollar and fifty cents. She is donating all proceeds to cancer research. She'll probably make about six or seven bucks.

McKenna knows. She talks around it every day. It's on her mind and I can tell that she wants to remember us and the moments. I thought she would be the one who can be immune to this. She used to have her own cool, fun world until I came around and ruined it all. I'm really going to miss her when I'm gone. She's the one who is most fascinated with life and because she is, it makes her the most fascinating person in mine.

Her bonehead teacher decided to give the class an assignment to read this story about a kid who's mom died. The kid has this struggle because he is losing memories of his mom as he goes through his life and he is very upset about this. I can't believe that fat slob of a teacher gave my daughter this book to read but he did. He's a fucking moron. Her book report, written in perfect English and exquisite penmanship, talked of her being in a similar situation and I could tell for the first time that my death is on her mind. A rush went through me as I read this book report. What the fuck have I done to my kids?

I'd like to say that McKenna and all my kids can take the place of my hodge heroes. I think they deserve it. I've always admired them. What parent hasn't admired what their kids can do? But it's not quite hero worship. While looking up to them, I'm so damn busy worrying about them at the same time that it just can't qualify. I love my kids. I wish that was enough. One day it won't be enough because I had a stupid plan but it was my only plan and it failed. In the meantime, does anyone want to buy a bracelet?

Yes, I have enough Flare.

Office Space is one of my favorite movies. When it first came out, I didn't want to see it because it had one of those underground followings where people just worshipped it and talked about it with such love. So I held out for a long time. then one night I was tricked into seeing it. And it has turned me into one of those too cool underground worshippers.

One thing I need you all to know. To me the best scene in the movie is one that's rarely talked about even among us worshippers. It's where the three geeks beat the crap out of the computer equipment with baseball bats while this great wrap song played. All shot in slow motion. Just art. It should be up there with other great comedy scenes like "Can I have ten thousand marbles please?" and "You've met jugdish..."

Any way, the Jennifer Aniston character worked as a waitress and was constantly being reminded by her boss (who looks suspiciously like the brother in Naploean Dynamite and if he is, he's going to win an Oscar someday if not for lifetime achievement. I mean, I'd take him over Ernest Borgnine, who is getting it this year and is a man who ate right by Sherri and I in England one night. It was Sherri's one brush with stardom) that she wasn't wearing any "flare". Basically, there weren't enough buttons on her shirt.

Buttons. What a stupid idea. People who aren't cool pass them to other people who aren't cool in the hopes that someone recognizes them so then they can be cool. Europeans who go to the Olympics love them and sucker Americans into doing it. When Americans come home they wear them for a few days and when they realize that they're not really getting the attention and wow factor they were looking for and got back in the European side of the Olympic Village, they put them in a box somewhere. Europeans still love them after the Olympics but when you really get down to it, most Europeans are geeks. Americans, on the other hand, just think "Oh god, this thing is going to put a hole in my shirt. And it's not that funny." But Europeans wish to be Americans even though they can't. Before we let them, they have to ditch the buttons. They have to stop liking dumb, mindless, souless house music. The men's bathing suit thing has to stop. It's gotten better, but just own it. Own the saggy shorts.

I don't include England or Ireland into this equation, though. Even if President Clinton doesn't think America and England don't have a "special relationship", I believe the rest of the country does. In fact, if there is a bunch of people who we think are cooler than us, it would be the English and Irish.

Any way, back to flare. I have it. This type of flare is bad but not really bad. I've studied Hodge daily and try to learn about my disease so much because that fools me into believing that I'm beating it. But I've never, ever run across flare until my doctor told me. Now this is the second time that I mentioned something in passing to my nurse and within five minutes, the nurse was studious enough to pass it on and the doctor was immediately available and nailed my malady without even examining me. People weekly ask me about New York and wonder if I'm ever going to come back to Chicago to get treatment. And I have to tell you that I just won't. I can't when there are people like that out there. It's more money. I know. I'm taking that from my family. But I'm giving them back me in exchange.

One day last week I woke up feeling terrible. More terrible. My whole right side of me was sore. Upon further evaluation, my nodes were sore. and they were bigger. I was also nauseous, fatigued, had flu-like symptoms. I thought to myself that it was a relapse. Well, a junior relapse since I actually hadn't been in any kind of remission. But I knew that until this point, the medicine was working. My nodes were going down. And then, as in the past, one day the cancer says, "Screw you. I'm gonna fuck you up." and then we move on to try something else that only sort of works for a while.

Luckily, I guess this is a little different. It's a reaction to the treatment that I'm getting. It can be alleviated through steroids. Ah the lovely prednisone. Many in the healthy world have heard about the joys of oxycontin. And there are many of them. Why, oxycodone, oxycontin's much less powerful little sister, has been a good, dear friend to me. But you don't really know about pred.I don't know how pred works but when I'm on it, I feel more normal than I've felt in a long time. I have energy. I'm aware and not in a medicine cloud. I'm not overly joyous or happy as with the oxy sisters. I'm normal. The only problem is it keeps people from sleeping much. And I'm okay with that. I actually have a ritual when I make it to five in the morning of dropping by McDiddies to get a breakfast burrito or two. The guy there knows me and is very real and nice. It's actually a pleasant experience watching the sun come up in the McDiddy parking lot and then a few minutes later, seeing Rte. 59 fill up with woozy motorists hurrying to their jobs.

My worry tonight is my nodes haven't gone back down much. Two nodes in my neck which were small before the flare have actually hooked up with the big blob in my neck. that's never a good sign. they say the tumors should return to the previous level but to me, once the nodes hook up, things are different.

The bigger worry is this is a medicine that is supposed to work and it isn't now with the flare. I should have killed off more bad boys by now. Soon, this treatment will stop working. The kill fast but not long is the way this medicine does it. And when it does, there's only one medicine that is a sure thing to me now. One bullet left.

So that's all I have for you. It's almost two now so I think I'm going to try to sleep for a few hours. The other day someone said, "We shouldn't jump to conclusions about that." And then I said, "We could if we had a Jump to Conclusions mat and game." Nobody got it. They moved on. Someday, film students will watch Office Space and the teacher will talk about it and because the teacher has never worked in an office environment and the students obviously haven't, they won't truly get how the Two Bobs were spot on. But then almost all of the film students will fail at making a movie (because almost all of them do) and they'll take an office job. Then it will come back to them. They'll join the rest of us annoying few underground warriors who laugh when the boss says, "Yeah, hey listen. I'm going to need you to come into work on Saturday..." And right after that it will come to them. The reason Office Space is so brilliant is that it points out to us that no matter how cool we are in the world, we are actually just a bunch of C students trying to pretend we're A students. The Two Bobs are out there using all kinds of fancy language in meetings that don't really have to happen. But then they go home, they kiss their wife and they're normal. I wish the Two Bobs can do something about my Flare.

I'm out of lungs

The chest pains from my left lung has returned. That means I got tumors throwing parties on both sides of the street. I'm in ny getting a third round of this new treatment. You will recall that the last round was a double dose. Since the treatment doesn't still seem to be working and it works on almost everybody, they have doubled my double dose. A little risky? Absolutely. I got little choice. To keep the side effects away, they gave me steroids. So as Cari Dinneen would tell you, I'm up all night. Maybe even tommorow. That's okay because I got New York cable. Ever see their public access stations? Whoooo mammma. New Yorkers seem to enjoy the company of Asians and transexuals because that's about what they talk about and show for commercials. Some S &M too. Truly fascinating. Mostly bad nakie too. I might call and ask if anyone wants to come over and watch tv. That's not hooker code. I really would rather watch tv. Beverly hill desperate housewives is getting nasty and who better to watch that with than a hooker?

Thanks again for all your support. If you want, maybe I can repay by getting a date with Liu, the rather busty Asian girl who must have a lot of itching problems like myself because she touches her body a lot.

Sherri Sighed

My college roommate and very good friend, Todd, used to scream at me in the middle of the night. I mean really rant and rave. He was sleeping. Well, we both were. It was all jibberish but still, it was scary and crazy and ugly because Todd was so mad. At first I thought it was a joke. Then I thought his denials about it in the morning were a joke. Finally, almost by the end of the year I realized, no, this dude really does get all mideval in the night. The last I checked with his very normal and patient wife, he still does it. Now that he is a lawyer and we are all older and uglier, I'll bet everything is even scarier. The thing is, when you meet Todd, you walk away thinking he is the most charming, nicest guys you'll ever meet. Just don't sleep with him.

Conner used to sleep walk. That was a little creepy because he looked perfectly awake and then he'd talk about going on a horse back ride or something like that. I think I used to sleep walk when I was a kid. My Grandmother one night found me relieving my bladder into a closet.

My wife doesn't really do much in her sleep which makes her very boring in that respect. She doesn't even remember her dreams. I mean who doesn't remember their dreams? Heck, that knocks out the plots of hundreds of movies right there. 

I say she doesn't do much because every once in a while, she'll slumber. She doesn't talk in her sleep. She sort of moans, groans, coughs, farts and does a weird gargling thing. Sometime all within ten minutes of each other, accentuated, of course, by the grand fart. 

A couple of nights ago, she did something that she occasionally used to do. She just shortened her routine to a sigh. I heard it. I remembered how she used to do that much more often. And I heard it again in my head and I noticed how her sighs are always filled with all the goodness in life. There were smiles, relief, relaxation, pleasure, innocence and more smiles. Such a great sound.

And at that time I knew what I had to do.

For a couple of months my doctor has been pushing me to consider an allo transplant in the future. This is the type of stem cell transplant you get by using someone else's donor stem cells. You'd think it would be a lot more successful than doing a transplant with your own cells because these come from a healthy body. But actually it's quite the opposite for Hodgers. I think the deal is you have to trick the foreign stem cells into thinking that they're still right at home with their usual liver, kidney, heart and lungs when in fact they are hanging out with someone else's and they can't get out. All kinds of kinds of anything can go wrong. 

The chance for a full cure has been around 8-12%. My docs are telling me that this rate has risen much higher since those stats. The chance of dying from the procedure is around 30%. That's about the same.

So if my math is correct (and if anyone has seen the way these kids are doing math these days, you know that it can be way off), 42% of the people either die or are cured right away. That leaves 58%. What happens to them? I believe the answer is they simply die later on, probably within a year or two. 

Sometimes they die a very painful death. There is something called GVHD. It is a disease you get when your new stem cells don't like your liver or lungs or pancreas. they get pissed off, cause a lot of pain and eventually you die. 

Sometimes people die a very frustrating death. Assuming they don't have GVHD, they're still not in the greatest of health. And their cancer is tough, really really tough. A doctor last week told me the tumors in my lungs were already as hard as concrete. Because of this, drug companies exclude people who have had an allo in their trials. They argue, quite correctly, that a person who has failed so many treatments is not a typical hodge patient and will therefore, skew the trial results in a negative way. They get bad numbers. 

So the post-allo hodge patient is left with trying to beat back the disease using traditional chemo, which, at this point, isn't a whole lot. To put it bluntly, it's certain death. It just depends on how long you can hold out. 

My original plan to hop on and off trials as long as possible has hit a snag in the form of me. Well, my body, at least. My mind is all for trying whatever drug to get me healthy. But my body is giving up. Right now, I am typing this at 3:39 in the morning because I can't sleep on the account of my nueropathy. Nueropathy is pains that start in the feet and hands and present themselves at first as tingling, as if your extremities are falling asleep. then it progesses to pain. then it progesses to pain that randomly shoots all over your body, all the time. The cure? Stop getting treatment or nueropathy will kill you. Without drugs, I just have pain in my extremities. Without pills, I have shooting pain all over my body all the time. the drugs evenutally lose their effectiveness. And I spend more nights trying to sleep but just getting shooting pain.

And then there is New York. Nobody ever fund out what caused me to be very sick and in a hospital this month. But I'm still not better and may never really get better. My lungs are badly scarred. My liver functions is low. My kidney is actually doing okay. My other organs aren't. 

I think my body is telling me it's had it. My doctor, in his easy way, has basically told me that he can keep giving me drugs but that doesn't mean I'll still be able to take them. It feels like to him, I need to get an allo. He would agree with what my body is saying.

I was pretty dead set against it until I heard that sigh the other night. That was a sigh of another time. After the events of this last month, I know I'll never get that time back just by jumping from trial treatment to trial treatment. I know now that I'm only going to get worse. 

And so instead of asking how long I can take or how long my body can take, I should also ask how long can she take? I know many of you out there will say stuff like don't worry about her or she'll take whatever she can because she loves you and stuff like that. But I see what it is doing to her. And I'm fucking tired of only hearing that sigh on a random night. I want to hear it every day and every night. Instead of conversations about the pains in my feet or the coughing, I want to talk about nothing and love talking about nothing.  She is great at talking about nothing. The best. But nobody can do that when someone has cancer. There is no nothing any more. That stuff is trivial. There are, however, sighs in the middle of the night. They sound so beautiful. I should love them but right now I hate them, instead. I think I may be ready to die to love them again.