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."

 

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.

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.

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.

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?

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.