Wednesday, September 26, 2012

More stupid whining

Sorry. It's been a long long time. i think I really needed a time away from everything, at least in my head. I wanted to try to forget, although that is a pretty ridiculous idea since everyone who has ever had cancer is aware of it every second they're awake.

I finished my SGN treatment. The FDA only allows a certain maximum number of treatments and I hit it. They do this because the side effects can get permanent. That's very believable.

I'm currently in a complete remission. Very excellent news. However, I still have a lot of side effects from the SGN. The bottom of my feet hurt so every step is a little bit of a shock. I have become a big fan of carpeting. My hands and lower arms are nasty, as well. It's really hard to handle small or slippery things like money. So every time I pay for something, I fumble all over the place. Sort of like a mentally challenged person.

This little vacation, however annoying it's been with the side effects, is essentially over next week. I will be seeing a doctor at Northwestern about getting yet another stem cell transplant. This one has a slight chance of killing me but it's probably time.

This transplant is different than the last one. First, I won't be killing my body and then injecting my own stem cells back into me. Instead, I will be killing my body and injecting someone else's stem cells into me. Now, before this year, something like this had a less than 7% chance of success. And it still has a 30% chance of ending in death. But this last year, some granola folks out in Seattle figured out that if patients like myself get into complete remission with SGN and then go for a stem cell transplant using someone else's stem cells, they have a more than 50% chance of success. They found the right chemo drugs but the bigger key was the fact that the patient needs to be in a complete remission. Still, 50% are the best odds I've had in a long time and probably the best I'll ever see.

The key is staying in remission. Studies have shown that the cancer comes back after two years, but I've never been able to last as long as the average person. And I'm already past one year as I got into remission while I was still getting treatments. I saw a doc in Seattle and the BOSS Dr. O'Connor in New York and they are both very nervous for me. It can come back any time and just because it's tired of taking this long coffee break.

The thing is, this transplant takes time. First, I have to find someone who is a match. Then that person has to find the time to do this. And it isn't easy for that person. I've already asked my sister and she has been really into doing absolutely anything.

With this political contest, there has been all kinds of talk about Ayn Rand. I used to be a believer. In particular, she said that people don't do nice things for other people--they're really doing it to make themselves feel good. Basically, it's all about me.

Ayn Rand never had cancer. It's just not true. People almost without exception, react a certain way when they find out you have cancer. They stop. Think. Slow down their speech for some funny reason. And they become overwhelmingly sympathetic. When you get that love, it makes you feel so much better inside. As if the love almost physically passes through. Yes, that feeling could simply be gas. But I doubt it. More than saying, "Hey, I have a broken leg." People usually shrug that off or even laugh. But not cancer. For some reason, everyone completely understands the enormity of the disease.

This isn't a selfish act. People aren't thinking like that because they want to make themselves feel better even if it is on an unconscious level. I generally don't like people. A good night to me would be to stay home and watch something on TV. I would take that over a night in crowded, smokey Vegas any time. But this event has made me love people. I am reassured by the fact that we are all flawed but we are all trying to enjoy the better things in life even despite the bad things that can happen. Like what Honey Boo Boo would say if Honey Boo Boo actually thought.

My sister is the latest example of this selflessness. The process that she would have to go through to give stem cells is a bear. They shoot you up. Prick you. Knock you out. Shoot you some more for 20 plus days straight. And then the procedure really starts. She doesn't care. Now I know people will say that it's nothing compared to saving a life. But it is. It's not like I'm asking her for a few bucks. Just because someone would naturally want to do it doesn't mean it will be a pleasant process.

Any way, who knows if she's even a match. With my luck, she won't be. That's when we have to go to the database. When we do that, it could take as long as 6 months. Also, because those stem cells won't ever be a completely natural fit, I'll almost surely have permanent side effects and some of them can be nasty. But I'll take that over the alternative.

By doing this, I can get out of the corner that I'm in. My disability insurance has already withdrawn a not too insignificant amount and they are looking for more blood. My health insurance has also been cancelled because I am technically not on the TDH payroll right now. So along with making less, I'm now paying for hoth the family's insurance as well as my own. I do get Medicare and that's not as much of a nightmare scenario as it is made out to be. The insurance I now have to pay for besides my family's is supplemental insurance for the stuff Medicare doesn't cover.

Don't get me wrong. We are not in need of money. Not at all. It's just that I can see a day when the disability checks can stop for good and the health care gets even pricier. And before I started all this, I promised I'd never dip into the savings I had built up for decades, all to stay alive an extra couple of months. I still believe that to my wife's objections.

So that's it. Thanks for wanting to hear from me. I don't know why. This is my whining opportunity and I usually don't disappoint.

Thursday, March 29, 2012

Goodbye Dad

I was driving on Randall Road last Saturday, my birthday, when a quick breeze ran through my body from left to right. I checked to see if the air conditioning was on. Nope. The window was rolled up, too. Then I became very sad. Very sad. Because I knew what had just happened. My dad was saying goodbye to me. About ten minutes later, my phone rang and my sister told me that he had died.

I know all of our dads are our heroes. And forgive me if this sounds familiar. By now, I'm sure you know that he was mine. But more than anything, he was just a good person. Maybe that is, in the end, better than being a hero.

Timothy J. Herlehy owned an excavating business. But he wasn't an excavator. He was a builder. Yes, he built many office buildings and parking lots. But he also made Kachina dolls. He built four or five houses and probably hundreds of different rooms for friends and family. He built flawless fences. I was jealous of his precision in those fences. He made driveways. He made a board game. And most important, he made me a man.

He made relationships that lasted much longer than the fences and driveways. He talked to his childhood buddy every week. I don't even talk to my college buddies every month. And he did it without Facebook. His life was always in building.

One week, he went to an Indian Reservation and built there just because they needed someone like him to help. He made me a home whenever I needed it. He made homes for a lot of people. It wouldn't be uncommon to wake up and see some strange person sleeping on our couch or in a bedroom. When people needed a place to stay for a night or a couple of weeks or even months, my dad put them up. I had the privilege of being introduced to Kenny Loggins' cousin once because he stayed with my dad for awhile. Really, he was the cousin of Kenny Loggins. He looked just like him and besides, who would lie about being Ken Loggins' cousin?

One of my favorite things about my dad was he made good things out of bad. One time late at night, he saw that I was hungry but couldn't find anything to eat. The next day was shopping day so you know, that night before the cupboards are pretty bare. This one was too except for a can of hominy. So he made that and while we both ate, he talked at length about the times he ate hominy and who eats it now and what goes with hominy. Hominy tastes like crap. I'm sure he knew it but he also knew what I have finally come to understand and that is, that it doesn't matter what you eat when you love and enjoy the people you're eating with. He told me some day we'll try some grits. I'm sure he was laughing inside because grits tastes like crap too.

My dad's wake started at four pm and ended at eight. The whole time, the line rarely thinned. You would have thought someone was giving away Springsteen tickets. He spent his whole life doing what I just figured out. Being a hater doesn't help anyone. Being a builder, now that is something noble.

Many people felt bad that he died on my birthday. They say that it was supposed to be your day. But I never saw the meaning of birthdays any more. Sort of a nuissance. Now, however, I feel much differently. If my dad were to die on any day, I'm actually glad it was on my birthday. Because I now know how to celebrate it. I'll do what he did his whole life. Why half-heartedly celebrate my life this one day when I can instead whole-heartedly celebrate his? That's what a builder would do. So every year on March 24th, I'm going to celebrate my birthday by visiting with his friends and family and saying goodby, again and again, to him.

I am very sad now. I don't know if this is grief. I am just sad. I wonder if I'll ever laugh uncontrollably. I sort of don't care. Where does time go? Life sometimes slips by us.

Tuesday, February 28, 2012

I'm just blabbing. I've gotten so bad, I'm just gonna blab.

I don't think they'll ever be a good movie about cancer. Certainly not an action movie. Matt Damon will never play me. Well, Matt Damon would never play me because I don't look like Matt Damon. He's cute. I'm more like Ernest Borgnine. Women have never fell in love with my looks. I usually need a couple of dates and long talks and walks along some body of water. The ladies like talking next to water. Then, eventually when I've done quite a bit of work and have exhausted almost all my jokes, they say some weird physical attribute is cute. Like my back. Really. Some girl, after knowing her for a long time and talking to her everyday about all kinds of stuff, said I had a sexy back. I didn't have a sexy back. It was a white, pale, fatty, baggy, lard. But you women, you will talk yourself into anything. Even a fatty lard back.

The reason you can't ever make a world shit-kickin'-Titanic-Celine Dion-Sings-the-Soundtrack movie about cancer is because cancer is so damn slow. He is a creepy bastard that is so creepy he moves slower than you can even track. You wake up one day, you feel like crap. Then you feel like crappier. Then crappier. Suddenly, you just feel like that pocket of lard on my back. Just some lethargic, buzzed blob. While you're laying there, cancer is killing you. First your blood, then your lungs. You never suddenly feel a puncture and hop into a car, rushing to a emergency center. It just slowly moves, a centimeter a day. Until, pip. It's in. Meanwhile, as the blob, you develop a cough. You think it's a cold because if it were cancer, there would be this big pop followed by menacing music. And then Matt Damon would crash through your window and carry you to a hospital. Nope. Cancer is a slow bastard.

Someone once described the devil as not someone who is red with a pitchfork and fire in his nose. Instead, the devil would be someone you don't know but who slowly but surely lowers standards, kills things quietly. Wait. Someone didn't say that. I think it was in Broadcast News.
But that is cancer.

I'm supposed to be in complete remission now but I can't get over being sick. I am the blob right now. An Ernest Borgnine blob and I'm trying to get out of it. I can't even write well. The biggest bad news is because I've taken so many pops of oxy-anything, I've reached the Michael Jackson and Elvis level of drug use. Will I die on the toilet? I don't know. I like to poop. I like poop as much as the next guy. I think women every once in a while take a really great poop as well. But they have to quietly enjoy it. It would be great if a woman one day wrote on her Facebook wall, "I just took a great poop."

Maddie has pink eye. I think I might have pink eye. But being a blob, I have to unravel all my problems to see if a number of them is related to pink eye. Just not feeling good. I can't remember when I had a whole hour where I felt no pain, nausea or discomfort. It has to have been a couple of months ago. My biggest and best wish right now is to spend a whole day feeling normal. Even Ernest Borgnine normal.

I need to reach the summer. If I can stay in complete remission at that point, I can enjoy a day or two or three. In the summer, my treatment ends. Before that, I won't have any relief because my side effects are getting worse and the drugs are getting less effective. But just the summer. A couple days at the beach where everyone can see my fat blob belly, four or five scars on my neck, a port in my chest and then, tada! My back. Someone should film this because in the middle of all this ugliness, I will feel so happy. Okay, so sure, there will never be an action flick about cancer. But maybe a horror movie starring my midsection.

Monday, February 27, 2012

It was good while it lasted

I haven't posted in a while. No excuse. But I would like to update everyone even though I should be going to bed:

I've been to the doc twice since the last post. Heck maybe three times. Good news. I had no cancerous activity in me at the time. But the drug and my history keeps everyone with extremely guarded optimism. This was a while back. Things have changed.

My neuropathy is bad now. It hurts to type. I can't button my shirt really well. I can't write my name really well but I never did in the first place. Typing is bad, besides being painful. Fingers won't do much. I have a hard time going up and down stairs. My body aches constantly like having the flu. I can't sleep now at all. I'm getting used to my sleeping pills and the pain pills so they work less. I'm in either sharp pain of neuropathy or aches at all times of the day and night now. I'm trying to take some vitamins to help with the fingers.

I can't tell my doctor any of this because he'll take me off the drug and I need the drug to survive. His reason is sound: the drug can debilitate me, meaning I could lose function of my hands, arms and legs. But I have to gamble that it won't. I need the drug and be alive more than I need to walk. And really, the biggest problem here is I have to be judicious with the drugs I ask for since they can catch on and give me tests that I might not pass.

There is a great Peter Gabriel song on his second or third album (he never named them; he's an artist). it was about this burglar who liked sneaking in people's houses. The drums on that was excellent. I think he used Phil Collins so you know it's that hard, pounding. In this specific song it managed to be creepy and pounding. It gave you the feeling that Peter was slowly stepping and stepping into the house.

Now, I hear Phil Collins' drums in my body. The cancer that has already snuck into my body and was in hiding for awhile, is getting bored and looking for some elbow room, stretch his nuclei. The right side of my neck is hurting every so often. The muscles around my neck start throbbing for a couple of minutes. Then it goes away. Only to come back and throb for a while. From experience, I know that only two things will happen: either the node will start to appear or the throbbing will stop, never to be heard from again. If the node pops out, it's cancer and it's game on again. If it goes away in the next couple of days, it was a cancerous node but the drugs beat it back so silly that it won't get up to fight again.

This is a time I knew would always come but you're just never prepared. Before I had the reserve of SGN. But I used that up. Now I got no reserve. It's the slow march to the sea. For months, I was just hoping to just get the summer. In May, the treatment ends and Dr. O was going to give me a break for a few months as long as I didn't get sick. It would have been unbelievable. My first single day without drugs for four and a half years. That's more than a thousand mornings waking up to another reality. I just wanted the summer. But those drums. I'll give you an update with this as soon as it breaks one way or the other.

Friday, January 27, 2012

To my youngest and happiest

Dear Maddie,

Today you gave me one of the best days of my life. I spent most of it with you. According to science, you will probably never remember anything. You're too young. I just wish that maybe today will come to you in a dream. And I don't think remembering it or replaying will be good enough. I wish you could have felt today. If you can feel it in your dream, that will be cool.

You dream that we went to the pool. You were afraid to go down the alligator slide because you don't like getting water in your eyes. We bobbed together and did all the cool things dads do with their kids in pools. And then we came home. You had half of mom's peanut butter and jelly sandwich (she packed you a lunch) and a whole banana. One day you were trying to figure out how to say the word banana and you looked at me while you were figuring out like it was an algebra question. Then you cried because you didn't want to take a nap only to fall asleep within five minutes of laying down in your bed. You woke up and watched Nemo. And then we went to your Father Daughter Day. We both wore pink. You were supposed to play hot potato but you loved the music so much, you decided to dance instead. You made me dance with you. It's hard to dance to children's songs, especially when people are waiting to play hot potato. Your happiness is so infectious that you got everyone to stop playing hot potato and half the party danced. Hot potato be damned. You are only two but you got twenty or so people to dance because you like to dance. A lot of dads dancing and Maddie, let me tell you, it wasn't pretty. But it was beautiful to me. You created it all. Your happiness.

The thing is, Maddie, this will all end for me. In a couple of months, I'll have to stop getting treatments. It was my last good bullet and I really enjoyed my time. The side effects have caused me to have extreme pains in my hands and feet. The pain has traveled up to my knees and to my shoulders. My lower legs are lumpy and it's hard to walk. Every step hurts now and I'm running out of drugs to help it. Every day I have to wake up and relearn how to ignore the pain. This must be what it is like getting old. But it's been easier because of you. I swam and danced today. The pain was somewhere but it wasn't on that makeshift dance floor. It was still one of the best days of my life.

Don't lose your happiness for anyone. Nobody should ever take it away. I hope that includes me.

I'm sorry, Maddie. I wish I did something different to change what is happening to us right now. I will cheat you. It hurts really, really bad to think of that. I can't now. You're sleeping. I need it too. I'll see you in the morning. Maybe we can have a better day. I have a feeling the closer I get to ending my last magic bullet, the better my days will be. let's keep laugh. Stay happy. Always stay happy. That will be your gift to the world. Maybe it is my gift to you.


Your Dad