Bucket List

I am building a bucket list, it just seems like there are things that I would really like to do now. I have no idea the reasons for them, but it's start and a goal for my future vacations.

Santorini Caldera, Greece
Venice Beach, California
Missoula, Montana
In-N-Out Burger

2011-06-03
I saw a show on pizza and what I saw of Totonno's made me what to take a flight the next day. John Stewart did a segment about pizza, (2011-06-01) in which he listed the best of NYC pizza. Two of them were already on my list, so I added some more because I really want to try some good NYC pizza!

NYC Pizza:
Lombardi's
Grimaldi's
Totonno's
Arturo's
Joe's on Carmine St.

Anger

I'm really not angry. I'm not angry at God or at life. Scared, but not angry. From my point of view this is one of those things that happens. And it happens to me. There really doesn't have to be a reason as to why this is happening-- which is really an odd thing to say because of my philosophy background. But the reason behind all of "this" doesn't matter. It just happens.

But every once in a while I get angry. I get angry at the people who smoke. I get angry at the drugs for clear skin whose side effects are, "may cause cancer". If you had to go through chemo you would avoid that shit like the plague. This is curable, death is not really in my life the way it is with other forms of cancer. But it's still a rather tiring, troubling, and painful experience. And the anger comes in when I see people doing thing that increase their risk of cancer. They have no idea of what they will go through; I had no idea what I would go through. And it's not fun.

It's rather short lived, and usually expressed with a deep sigh and expletive. But that's about the extent of my anger.

Chemotherapy-- the start

With the first week of chemo under my belt all I have to say is, "holy crap!" I had no idea what to expect. My cousin had bone cancer and he told me some things, people at the pharmacy told me some other things, and other friends -- who are also cancer survivors-- told me things as well. But when it came down to it, none of it hit home like going though it. I knew I would be tired, nauseous, have a metal taste in my mouth, and dizzy. And boy were they right.

My regim is simple. A round of chemo is one straight week-- 5 days of Bleomycin, Etoposide, and Cisplatin-- then two weeks of bleomycin. The bleo is administered on Tuesdays only so that means I only go in for one day the last two weeks. I am currently between the two bleomycin days.

What did it feel like? Initially it felt like being covered with a heavy wet blanket. Then another one would be thrown on, and then another one, and then another one, and then another one, and then I decided to take a nap. That was day one.

I also started out with the immediate metal taste in my mouth. Cisplatin is the culprit. That mother take about two hours to load into my body. Nothing gets rid of the taste at all. I thought it was purely psychological at first so I started sucking on some silverware.... oh, no. It was not psychological. Thank Buddha I had a boat load of wood chopsticks in the house. Plasticware also helps. But regardless it also shifted my taste buds.

Thankfully I'm a flexetarian. I prefer vegetarian foods but I also enjoy meat, I've just tried to keep it out of the house. Well no longer. Before I started this adventure I purchased a lot of soups... just on the off chance that I needed something quick to fix. I didn't count on the fact that my taste buds would change and I would actually hate meat and crave chicken and cheese. So it was back to the store. I started craving odd foods too: guacamole, cheese enchiladas, sour cream and cream cheese. I think it's a texture thing, but I couldn't get enough of this stuff. To give you an idea of how my taste buds changed, before this started I could not stand Coke Classic... especially with high fructose corn syrup. I could stomach the diet cokes, but that was it. Now that's totally reversed. I talked to one lung cancer patient who said she had not touched a drop of coffee since her first day of chemo treatments 8 months ago... she was a coffee-a-holic and now she can't even stand the stuff.

As the days pressed on I adjusted. But I began to notice something odd when I would wake up. My stomach would turn and do flips, I would be dizzy, I couldn't stand for a while. It would take me about 30 minutes just to get out of bed. I'm normally a person who doesn't ask for help, but I finally asked for it... I asked for my friend to stay the night because I wasn't sure what I would be like in the morning. I finally figured it out, I was nauseous. So I started taking the medication for that, and it helped. But it created different effects.

Now I felt hung over. Pure and simple. It was like waking up, still feeling a little drunk from the night before but you weren't tired, you couldn't sleep. You couldn't do anything because you were still physically tired and exhausted-- those wet blankets did not go away. But you couldn't think or read. I thought I would be able to get some reading done in this week, but no. It would take me about an hour to read two pages. I had lost all cognitive abilities to process and think. The only thing I was capable of doing was to watch TV. Thank goodness I got an iPad and loaded up season one of SNL. I would lay on the sofa and just try to watch episode after episode. If I was lucky I would drift off to sleep.

These feelings did not stop until the Monday after the first week. By the time I reached my second bleomycin day I was actually in a good spot. This week I'm actually able to drive to places-- but I still keep them short, and close by. I'm measuring things in minutes. Yesterday I was only able to sit zazen for 10 minutes before I had to lay down. Today it was 15 minutes. I can stand in a line for about 5 minutes before I have to rest-- my first trip to the coffee shop was me getting a table and waiting for the line to go down to one person so I could order; then I sat down again to wait for my drink.

It wasn't until a full day after I stopped taking the anti-nauseous medication that I was actually able to read. I'm still a little nauseous, but I can read again!

I have to say the psychological impact freaked me out a little bit. I remember reading about the psychological impact on chemotherapy patients and how they don't want to go back. And they are freaking right. I was so happy when I drove past the cancer center and did not have to turn into their drive. I actually started to shake a bit when I had to go back for my first bleomycin only treatment. I did not want to be there. I knew I had to go, but I saw my body reacting in a very negative way. I really view this as something akin to doing the dishes. I hate doing dishes, but it's something that needs to be done every day. So I do them. Getting my chemotherapy treatments is exactly the same thing... there are different effects, but it's the same attitude.

I also noticed I completely shut down by the third day. I just curled up in the chemo chair and did not want to talk to people. I just wanted to try to sleep and get through the treatments and I just wanted to get home. Let me tell you when I was done Friday I think the pump was still attached to me when I started to get out of the chair. I was so done with that place, I just wanted out.

Oh, you are attached to a pump. I didn't know this when I started. They pump the drugs through you. This makes for one of the most annoying things ever, having to go to the bathroom. Which you have to do about every 20 minutes toward the end of your session. You have to get out of the chair, making sure you don't snag your tubing; make sure you unplug the pump from the socket behind your chair; and then move all this stuff away from the chair without catching the cord or your IV.... all the while avoiding the people in the chairs next to you AND making sure to get to the bathroom in time to plug in again before the battery runs out. Then you have to reverse the entire process when you get back to your chair. Going to the bathroom was by far the most annoying thing about the entire process. I am not kidding.

Other side affects? Your skin becomes very sensitive to the sun. It feels like laying out on the beach just before you start to burn. And this is the normal, every day sun in April. Sure Spring is upon us. But there isn't that much UV out there. And it happens even in the morning sun when the UV is at it's lowest.

I haven't gotten mouth sores, but I'm doing what I can not to get them. Even though I'm rinsing regularly I can feel the lining of my mouth give way-- even the lining of my throat. My mouth is raw, but it's not a problem-- yet. One thing I have learned the hard way, I can't eat potato chips. They taste wonderful at first, and everything seems normal. But then my mouth will start to feel like sand. And there isn't anything I can do to remove that feeling until I eat food and process all of that salt.

The best part about chemo so far, my friends. Since I can't really do anything that I'm used to doing -- reading or computer work-- a simple phone call from a friend to tell me about their day means everything. I'm still me, I'm still awkward, but I'm very appreciative of the time-- more than you will ever know. I'm also appreciative of my friends who have helped out and brought food, and I'm also appreciative of my friends who sent care packages. But most of all I'm appreciative of my best friend who would cook me dinner every night, and then bight her tongue when I started cooking dinner one night. I like to cook for my friends, and I finally felt "normal" after a very long week.

The worst part about the chemo so far, bathroom breaks.

Testicular Cancer

The hardest part about being diagnosed with testicular cancer is the fact that everyone wants you to take charge of your treatment of your disease when you can't even pronounce what you have. I have it on tape (iPod) and wrote it down, and I still can't freaking pronounce it. And then you're supposed to become an expert on this, in this over night? Yeah right.

Seven to eight thousand males get this per year. Since I live in Normal Illinois, this works out to two people a year. Sometimes I wish I would be the small percentage of males who get breast cancer solely because there would be a support group in my town. At best I can find on line groups. Sure there is the Livestrong foundation. And don't get me wrong, they have been nice in some of their responses. But there are times I feel, living in the information centered US, that all that is being asked for is more information so they can build data profiles on you for the targeted customer communications, "Dry mouth, depressed, not hungry? Try these pills!"

I've been trying to think of a way to start this blog and in my head, in the world of ideas, everything sounds better, more eloquent, and rather dignified. But when it comes time to sit down and type, the only thing that can come out is "crap". No, it really doesn't come out as that, it really comes out as a "FUCK", with some "what in the..." thrown in there for good measure.

I'm actually, really ok with the diagnosis. It is rather frustrating. But there is really very little I can do, other than deal with the issue at hand. It's treatable. It's curable. And we will do what we can. I have nothing else to do, and if I don't do something about this, I will die. And I really don't want to do that yet. And really, if I do do that, I want to be present for it. And I don't think I can do that just yet. (That's the Zen part of this blog.)

How did this start? Well about 7 months ago I put on my pants and it felt like I racked myself. I thought I was getting older (I'm in my 40's, my body has been going to pot lately) and "things" were "falling". But the pain stayed. It would go away, but then it would come back and stay for a while. Then it would stay even longer. I eventually felt down there, and the right one was different than the left one. So I made a doctor appointment. I actually made an appointment for my back, this was secondary.

The appointment came and he felt my testicle and said, "This doesn't feel right. We need to get a sonogram on it as soon as possible". So I really wasn't worried. Cancer didn't come to mind. I had an issue and it needed to be addressed.

So I had my sonogram done. (Why is it I get the hottest blonds I've ever seen in 4 years sonogram my testicles?! I've had it done twice and even with all the pain there were a couple of times I had to think, "ooh, more lotion... baseball, baseball, nuns, nuns!" There is this odd cosmic joke out there, and "hot blonds massaging my testicles for medicine and science" is just one of the setups.) And within 3 hours of exam my doctor called and said, "This doesn't look good, we need a urologist to look at it. Something might need to come out." That's what I remember. More could have been said.

The odd thing about this entire process is that cancer was never mentioned until the pathology report came back. They couldn't say it was cancer even though they knew it was. Because of this vague terms were used. For me I was vague and unsure of what was going on. For my best friend, she knew what was happening. The doctors knew too, they just couldn't tell me. The magnitude of the problem really didn't hit me until the CT scans.

So my urology appointment went something like this, "Hi. Do you want kids? It needs to come out. It might be cancer, we don't know until we will do the pathology. It's 101, this needs to come out now. How's tomorrow?" So the urologist yanked out my testicle out the next day. The thing that took my by surprise was all the blood tests and chest x-ray they did. I didn't know it was cancer, but they were assuming it was. And the x-ray showed "nodules". Terry the Tumor's first public appearance.

Of the things that really have bugged me throughout this ongoing ordeal, the following is the biggest. This was my first operation, other than tooth extraction. This was the first time I was out like a light. There was nothing. And I mean nothing. I remember they said, "we put it in, you should feel something warm". They were talking about the anesthesia. And it was like a wave of wet sand hit me. The next thing I remember was someone saying, "OK lift up." And I screamed because my groin hurt. I was hoping for something like an out of body experience, or some really cool dreams. But I had nothing. It was literally a time warp, a sharp, crisp, wet sand like time warp of several hours.

So in recovery for the operation the pathology came back, cancer. Mixed cells. I had both, I can't spell it, sematoma and nonsematoma. This told them it had spread. The urologist saw my x-ray report, he knew it already had. The scary part for him and my friend is that I had been complaining about head aches. Who knew testicular cancer can spread to your brian.... my urologist. But not me.

So we did three CT scans. Don't choose the apple flavor drink... it's horrible. I'm sure they are all pretty horrible. But that wasn't even close to apple. Let alone a drink. They scanned my head, chest and pelvis. Luckily only one of the three came back positive, my chest. I named my tumor Terry. He lives in my lower right lung. He has some friends mucking around with my lymph nodes around my heart as well. When I was told this, it finally sunk in. Not only that but some other things started to make sense. There were pains in my chest. I thought I was getting fat and out of shape. It was in my right side, so I wasn't worried about a heart attack. It just felt like I needed to go to the gym. And after about three days, I felt better. But now I had a better idea of what was really going on. And yes, there were also periodic heart pains as well.

For those of you keeping track of things, this is Stage III Testicular Cancer. I is in the testicle. II is I plus in the lymph nodes. III is II plus somewhere else in the body.

Right now the plan is Chemo. BEP. I have no idea what that means other than the bleomycin and the potential lung issues. Yeah, lung issues. Don't forget about the liver and kidney issues. Right now I have no idea what to expect because I haven't gone through it. That's sort of what this blog is about. My main concern has been about the chemo, I don't know what to expect. I didn't know what I had was cancer, and I don't know what is going to happen when we treat it. If I can, I will write about it. I want to write about it. I want to write something more intelligent than "crap". I want to give some details so that if someone does go through this, they will at least have an idea of what I went through... and hopefully that will help them make their mountain a little less rocky to traverse.

What's with the title? Well, I am a practicing Buddhist, a Zen Buddhist. And I also like coffee. If I can walk, I will be walking to the coffee shop. If I can type, I would prefer to type from there, from the coffee shop. When I was recovering from surgery my friend would take me to the various coffee shops in the area. She would grade, I would read Craig Ferguson or Zen books. Craig's novel, "Between the Bridge and the River" is really quite good.