Friday, January 28, 2011

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.

Sunday, January 16, 2011

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. 

Thursday, January 6, 2011

The better part of Mike Martz

My friend and business partner, Bob, likes sports analogies. So for Bob, here goes. 

My doctor is the Mike Martz of cancer medicine. He even slightly resembles him with a quirky demeanor and slightly hefty girth.  They both have a mad scientist quality to them. And while the cautious ones call them foolish, others call them bold. Maybe they're a little bit of both. I've always admired bold even when it's stupid. I have a bold wife. So maybe I'm in love with bold. Dr. O'Connor told me a few times that when it's time, he has a few tricks up his sleeve that will pull me out of it. This was one of them. 

I was originally scheduled for two days of chemo each lasting one hour. But the tumors in my lungs had other ideas. Tumors had been quietly residing in my lungs for a little while but since they didn't make too much trouble, were generally seen as okay. But the night after getting the first of two days of chemo, they reacted negatively. My whole body was shaking with strange chills. Outside of my body was freezing but the inside was burning up. I had really bad motha of God pains in my arms and legs. Sharp, random and merciless ones. Most importantly, I couldn't breathe. It wasn't like I was wheezing. My lungs just could open up enough to give me any air. I was more sort of suffocating. And who-boy, what a wonderful feeling that is. The next day, I saw Dr. O'Connor and without even examining me, he called an ambulance. 

Tests showed that I barely had any blood pressure. I thought you died from high blood pressure but I was actually dying from low blood pressure. My other counts were fucked up. My kidney, my beloved one kidney who I had gotten through many a pick-up football game without even a scratch, was the next to go. I guess I was really cooked. But Dr. O'Connor's onc team was given instructions on how to proceed through the weekend saving the kidney first and then getting the blood pressure back. By Tuesday I was okay but still had two huge rocks in my lungs. And I really, genuinely wondered how the hell was I going to get rid of these tumors. 

I was sort of in a Catch-22 situation. My body was clearly breaking down from taking so many treatments. More people die from getting treated for lymphoma than from the actual cancer. On the other hand I needed the treatments to stay alive. Making matters worse was the fact that with every treatment, the tumors themselves grew harder. The pulmonologist who scoped the inside of my lung told me that the tumors were like cement and was worried (okay, he said "concerned" but that's medical speak for worried). 

So I was facing the dawn of Wednesday morning (That sounds so poetic. But it's not. This time of year, dawn is 7:30 in new york. It smells from all the garbarge that hasn't been picked up and cabbies are yelling at each other. Instead of this, Dawn sounds much better.) So yes, it's dawn in New York and I'm in a bad place. In steps Mike Martz.

For those of you who don't know, Mike Martz is the offensive coordinator of Da Bears. Around the NFL, Martz has the rep of being a genius but risky, quirky, funny looking, a little detached from the day to day things and pretty cocky. In the last couple of years, he's had trouble finding work because he was just a little too bold and brash. His quarterbacks always got injured. But his offenses have always worked. He's won one Super Bowl running his system with the right people. 

I actually wasn't much of a believer in him until the Cowboys game. Jay Cutler was getting beaten up and down the field. The Bears offensive line had been physically torn to shreds and ridiculed. I think dem Cowpokes set a team record for sacks in a half. Their players were getting to our quaterback before our boy could even turn around. Past Bears coaches would see this and think, "We're beaten. So let's throw really short passes and do lots of runs. That way we'll slow them up, save our QB and maybe we'll get lucky." But Martz did the opposite. Come time for the second half he threw even more. He threw more than that, he threw a ton. Alas could we even say he threw a plethora of passes, a myriad of tosses? Yes. We can. And he did it with style. Instead of sending out two receivers and leaving the rest to block, Martz sends out five. The Cowboys were stunned. They probbably thought it was madness. They were completely taken off guard and the Bears won easily. How bout dem Cowboys?

So back to Bob's sports analogy, my doc is the Mike Martz of the cancer. And with me, instead of runing the ball, he threw it all over the field. 

I was sick but I came back. By Wednesday, I was ready for some chemo. Treatment protocol says that I should get one hour of chemo on days one and two. I had already gotten my first day of chemo and that didn't go so well. Still, I needed another day/hour. Almost any doctor that I know of, would have stopped the treatment right away. Give me a break for a week and see what'ss out there. They would have run the ball like all the Bears coaches in the past.

Coach Martz, though, said fuck it and gave me two hours worth of chemo instead of one, set the drip to a higher speed so I'm getting it dripped into me twice as fast and oh yeah, he gave me even more chemo. He wanted to shake things up a bit. Run some Shock and Awe in Mike's body (that's one for my God-fearing Republican brethren). Or you could say that he did a little Shake and Bake (that's for my Will Ferrel fan/brethren).

It worked. Today, while I have some major annoyances, I feel and look human. Some of the tumors have shrunk after only one night and you almost never see that. The pains in my feet and arms are better. My breathing is still very bad but my head is in a better place and I'd prefer to wait a few days to let the chemo do its stuff before worrying about my lungs yet. 

I still stand by what I wrote the other night on this blog even though I had to take it down. My body was in a really bad place. My mind followed to the bad place. In the previous days, I cornered as many medical people as I could and asked them how close was I to well, you know and every single person said I was as close as I could get without seeing a tunnel. That night, I wrote it all down because I needed my own catharsis. It was true but the problem was, the truth was constantly changing at that point.  I didn't yet get to see Martz yet.

The next morning, I had to take all the blogs down for my wife's sake. Cancer, for the first time ever, broke her down. I guess a lot of you folks read this and were concerned and she wondered if she should come to New York. Some of those calls were from family members that have yet to help at all and should be embarassed at that but that's your demon, your own cancer. But mostly good people called and mobilized. I told everyone I was dying on a blog. Everyone came to help. The thing is, Sherri was very scared and confused with all of this. 

Sherri and I have some very strict agreements regarding my care. The first and biggest is that she can never, ever lie to me. If look like shit, she tells me I look dog's ass. This comes from the really strange phenomenon that the patient is always the last to know anything about his or herself. Everyone lies to the patient or in the very least candy-coats the news. Many people think they see their lives flash before them right before they die. I'll bet a good many of them instead are saying, "Damn. Why didn't anyone tell me I was this bad?" There was a study done just recently asking doctors only one question: When a patient is going to die, do you tell them? Only half the doctors answered yes. The rest lie. Sorta downer there. Half the doctors you have will lie to you about your own life and you'll never know.

Not realizing this, however, I originally planned it this way: Until the time comes, Sherri stays with the kids. Until the last minute, she stays. She's better off keeping life normal here and I could rally and come back to health. While we have great friends and neighbors, we couldn't expect them to keep watching our youngins' every time I'm in the hospital. I just don't think that would be fair to all of you, to keep burdening you.

But I was wrong. I never accounted for the fact that so many people cared. Do you realized that I'm not a very nice person? Plus, I'm really stupid. While I thought I would know how bad I was going to get, I really didn't. And of course, nobody was telling me. Dr. O'Connor didn't get the chance to tell me. So Sherri should have been with me. She really wanted to. But she was just following my wishes. And last night, I came home to a woman who had really been through the shit for a couple of days. My own Mike Martz had been blitzed and I was running the wrong play for her. 

Thanks everyone for helping. I'm a lot slower today and will be for a while. But I'm still here. When I saw Doctor O'Connor the last day, I told him thanks for keeping me alive for a couple weeks. He looked at me as if to say, "Huh? You ain't seen shit yet, sonny boy." But I think he held back and instead he replied, "Keep you alive? Michael, I'm going to cure you. You just don't know it yet."