Monday, December 21, 2009

End of SAHA cycle one

I talk in weird generalities to Conner now. I must be driving him crazy because it's a lot of short lectures about treating people fairly, never giving up, being upfront with people, etc. He's hit that pre-teen age and doesn't really go for parents any way. I'd give the same lecture to McKenna but she'd just space out and start singing or something. Madison doesn't understand English yet so she's not in on the conversations. She does stare at me a lot as if to saay, "This guy looks a little like me, has about the same amount of hair and sniffles a lot. He's annoying. He's clearly not as easy on my eyes as that lady who always picks me up."

Two new nodes have popped up and I'm going to see what the doctor has to say. Tomorrow is my last official day of the first cycle and it doesn't seem to be working, as my two new nodes can attest. The administrator of the trial said that nobody sees results this fast but I'm going to ask the doctor. Even if I don't see results, I shouldn't be getting these nodes either. In total, that makes seven areas of cancer. Sounds like a lot. Probably is but the good news is only two areas are near major organs, which is my chest and belly.   

Last week, tests showed that my liver functions were high so the doc took me off all non-essential drugs. That means no sleeping pills and I have to be easy on the pain meds. So I'm not sleeping much, probably sort of like many of you. I can only sleep on my back. If I try either side, I get pain. If I try my stomach, I get chest pains. Most of the time I just stare. 

Sorry this isn't funnier or more poetic or even just an easier read. But I wanted to give you an update. So many of you have been very supportive. Hopefully one day that support will pay off and we'll buy each other drinks. Mine will be a club soda. 

Tuesday, December 15, 2009

The SAHA Trial

I'm leaving in a little while. I go back to New York for lab tests every week for the first four weeks of the trial and from then on I only go back once per month. The latest tests show that I have cancer in about six places: two on the right side of my neck, two on the left side of my neck, one in my chest and some activity in my belly. The new medicine, called SAHA, consists of about 17 pills every day for three weeks and then one week off. Right now, I'm coming up to my week off. When I'm on the meds, I get a headache that doesn't go away until night time, feel nauseous and get tired. Recently I got a head cold and am fighting that without other meds because they don't want to elevate my liver function. Even so, my spirits are up. Thanks to everyone who has dropped a line. I haven't blogged in a while because the medicine makes me really tired during the day. Plus, I have nothing new to say and didn't want to bore you all. I'll try to post something more substantial in the next week. Thanks again. 

Friday, November 20, 2009

Waiting and Gifts

I'm still here. Waiting. I have about a week and a half until I finally get my first post second relapse treatment. I'll be swallowing about ten pills every day and we'll see if it's working around Christmas time. If it doesn't, Plan B is to go to the Mayo Clinic for a combination drug that's showing promise. That's if it's not too late. Because I have only about a 30% chance of the first drug working, I've already scheduled an appointment with them. The head guy there can be seen in February at the earliest. So I'm not seeing the head guy. 

As I wait, the cancer spreads. There's nothing anyone can do. The day is very difficult for me. I'm very tired and sore. Sometimes drugs help and sometimes they don't. I'm taking naps now but that's not good because I'm not so tired at night. 

I want to tell Conner. I want to tell him to remember every second of this. But I can't. In fact, I haven't. We haven't said anything to any of the kids yet but eventually it will become obvious. When I do, I have to put it in good kid terms. Harmless and non-committal. But I want to tell them differently. I want to tell Conner to lock in each second.

I wish I was Michael Keaton in that movie where he died from brain cancer but filmed all kinds of footage of himself. I just don't know what to say. Plus I look like shit. 

I read other people's cancer blogs and they are much more upbeat. Some of the day I'm like that. It's those times when I tell myself that this is now a disease like diabetes and I just have to live with it. Those are the times I like the best but I feel like a fool thinking that.

The holidays are coming up. My wish is that I am given the gift of mind discipline. I want to think the right things, good things at the right time so my family and friends can enjoy the moments. 

Wednesday, November 18, 2009

night notes

Up late. Collarbone is sore again today. Worried that the new treatment won't work. If it doesn't, I'm up the creek. Odds aren't with me. Studies aren't with me. Need to go to bed and forget. Love sleep. I wish this wasn't happening to me. Chest pains are back. No itching or night sweats. Miss worrying about something stupid. Still mad at God. Not speaking to Him anymore. Still haven't told kids. Conner is catching on. Hate me for inflicting so much pain. Wish wife would have met someone else so she could grow old with someone together. Look worse today. Disease keeping hair from growing. Look like Patrick Swazie, not the dancer or bouncer but the guy in People mag who had cancer. Now groin and leg hurt constantly. Growing there too. Waiting. Hope Kate Levin's okay.  Wonder. Wish I could be happy. Can't enjoy happy moments. Love my new baby. She smiles a lot. Hope McKenna dances when I'm gone. Not sleepy but tired. 

Friday, November 6, 2009

I couldn't kill cancer. But I'm gonna kill his friends.

"I don't understand the current thought of oncology. Take you, for example. It's clear your cancer rejects chemo. But the answer with most oncologists is more chemo. And the ironic part is, while the cancer gets stronger every time, your body gets weaker." 

That was one of the first things my new doctor said to me. His plan is if you can't kill the cancer cells then kill the many cells that feed cancer cells. Eventually the cancer cells weaken and sometime after that, enough cancer cells die that you can live with it for a while. At least that's how the theory goes. 

Sounds simple but there are some pretty large drawbacks. First, it takes a while. Cancer can still grow even while you're taking the medicine because you're not killing them.

Second, it depends on clinical trials. The drugs are new and experimental and almost all are in clinical trials across the country. So you can't just go to the doctor and get an injection. You have to wait and look around. 

That's where I've run into trouble. My doctor wants to get me into one of two trials but neither start for the next three weeks. In the meantime, I have to bide my time and hope the cancer doesn't spread to any place important. The best the doc can do is get me some drugs to slow the spread a little. It's sort of the way it goes. 

The third negative is because these drugs are new, the side effects can be quite adventuresome. I'll try to be clear about what's happening to me on the blogs so you can feel like you're right there with me puking away. 

My doctor won't give me a timeline of my life expectancy. I would imagine it's because this is so hit or miss. Sort of alarming. Obviously, now it's a real long shot of ever completely kicking this. But that's perfectly fine with me. I'm okay with having cancer. I'm not okay with dying from cancer.  

In the meantime, my body's really sore and I got nodes popping up all over. I can't lift much with my right arm because of a node that's digging into my shoulder and I can't lift much with my left arm because of a node on my shoulder and one on my chest. So when I hold the baby I try to balance her. She's getting chunky so I don't know how much longer that'll work. I'm very tired because my body is busy fighting the cancer. I look like crap, worse than I feel. The kids still don't know anything's wrong. Sort of hard to tell them. 


Wednesday, October 28, 2009

Whack-A-Mole Relief Pitcher

I coached Conner's baseball team for one year and it wasn't as enjoyable as I thought. I had a few of those kids who didn't really care for playing much and I was never sure how to get them motivated. I think we ended up about .500 so obviously I wasn't very successful at motivating them. I was probably about a Lee Elia/Jim Rigglemen level. Nothing special.

One thing I did end up doing well was I knew when to change pitchers. I didn't let a kid walk ten like you see on the little league ball fields all too often. As they say in baseball, I had a quick hook. 

After days of deliberations, I'm bringing out the hook again. This time it's MD Anderson.  It still is the greatest, one-bad-motha cancer fighting institution. But I need something different now. 

My world is now that of the experimental drug. After days of thought, I realized that no matter how hard I try, I'll never quite understand all of the different drugs out there. I need a doctor who can help me navigate this new world. My doc at MD Anderson is certainly a leader in this area. But as I mentioned before, it's in the research part and not the people part. People are a big inconvenience for him. 

So my reliever is a fella out of New York named Owen O'Connor. Dr. O is highly recommended by other patients afflicted with what I have. But most importantly, these patients have one thing in common and one thing that I badly want--they have a different attitude towards this cancer. They think this is a disease and no more. Dr. O's patients believe that you can go from treatment to treatment playing Whack-A-Mole with lymph nodes for quite some time. Even years. Try a treatment. See if that knocks any nodes to normal size. Then when it stops, go to another treatment. Eventually, yes, you run out of treatments. But I'll take a couple of years. 

Now, I haven't told anyone besides my beautiful wife. I haven't even met Dr. O. although I have an appointment with him next week. So things could change. But I doubt it. I have a good feel for relievers.

Monday, October 26, 2009

First They Take the Funny

Last week, the doctor called me over the phone and told me about my test results. Today, I got to see them in writing. It is very difficult to read on paper that you are dieing. 

This report is bad. I have a cluster of nodes in my neck that are cancerous. And I have one lymph node in my chest that's 2 cm big and cancerous. I have a biopsy on Thursday to confirm the test results. There's no shot that it's not.

Ever since I met my beautiful wife Sherri, I always loved it when she sang. She's happy when she sings and if people get past the annoying bastardization of famous rock songs, you become happy listening to her sing too. Every day, the house is filled with her singing some song she just heard on the radio. It's almost always a catchy boy band tune or something from the eighties. Today she sang Who Are You from the Who only she did it in her way, a snappy version of Who Are You. But it never matters.  And now I can't stop thinking that one day, the singing will stop.

Somebody prove to me that there is a just and kind God. I can't do it. We were a very happy family and God fucked it all up. Even if I break all odds and live longer than the one year they give me, how much longer will I go? Will I ever be able to walk one of my girls down the aisle in her wedding? Will I be able to help my son start his own business? Will I take my wife to Australia? 

The answer, of course, is no. Nobody gets those years. People talk about waiting for that miracle drug to come along but that's a complete fallacy. It's Hollywood. Drugs take decades to develop, years before any patient could ever put it into their veins. And so we patients know what's out there awaiting us. And there's no miracle drug. 

At this hour I can't sleep.  My b symptoms have begun again. That means that this cancer will soon be going all Midevil on my body. I can already start to feel it. The pains and fatigue are here. I already have that look. I weigh in at 165 Ibs. Before I had cancer I was a buff 190.

Now it is 1:30 am and you all are asleep. Good for you all. I took a sleeping pill but it doesn't work. I took two benedryl and still nothing. I lay in bed and think of how I failed my family. In the end, I didn't provide for them. My death will cause them pain and a feeling of emptiness their whole lives.  The pain of this burden is more immense every day. Cancer is eating up a part of me on the inside. The pain of screwing up my family forever is eating the rest.

Sometime later I'll sleep and that's the best time of my day. In my dreams I am normal. I laugh. I tell jokes. There's no b symptoms. My wife sings.

Wednesday, October 21, 2009

Entering the Land of I Don't Know

This morning I woke up and realized that I was way wrong. The node in my neck is getting bigger. The night before I wrote on my blog that I thought it wasn't because it wasn't growing outward. But I felt this morning that it is growing sideways. It's butting up against my throat now. 

By the afternoon the doctor called and told me the Morning Me was right and the Last Night Me was way wrong. The tests show the cancer is back in two sides of my neck. 

What that means is I've entered into the Land of I Don't Know. This is a place where nobody really has the answers and you're on your own to find them. What medicine should I try? "Well, I don't know." Will it work? "Well that depends." How will I react to this treatment? "Well, we're not really sure." 

The only job available in the Land of I Don't Know is the job of staying alive and getting treatment. And this job is hard. I have to make sure all the paperwork is shuttled from hospital to hospital. I have to get shuttled from hospital to hospital. And I have to, in a sense, be my own doctor. From here on out, doctors only make suggestions because they just don't know anything works. And because there aren't a lot of Hodgkin's relapsers alive out there, there aren't that many doctors who know how to treat them.

From here on out I'll be getting traditional chemo treatments along with experimental treatments. The key is to find something that works for a while. When that runs out, then I need to find something else. There are promising treatments out there but nothing that's a wonder drug. I'll have to fight through side effects and hope drugs take. 

By now you may be asking how long I have. I can tell you that I feel good. My neck hurts but that's about it. The doctor told me it is a matter of years and not months. 

By far the bravest citizen in this Land is my wife. What do I do about my wife? What do I tell her? How do I keep making her happy? What kind of future can we have? What should we both tell the kids? Welcome to the Land of I Don't Know. 

Monday, October 19, 2009

Hey buddy can you spare $76,000?

After two months of fighting, it has been decided that my insurance company will not pay for my proton radiation treatment. Those of you tea baggers who don't want government run health care because you're afraid decisions will be made by a bureaucrat instead of a doctor? Well, the truth is, decisions already are made by bureaucrats instead of your doctor. You just don't know it. 

My doctor is the leader in the world in radiation. He just gave a talk in Japan about it. Americans don't give talks to the Japanese about technology unless they really know their shit. He knows his shit. But the insurance company knows better, apparently. 

There are very few avenues of appeal left. It looks like I'm going to pay by weeks end. I owe $76,000. The good news is almost half of that is covered by the Herlehy Helper party. Thank you for getting drunk and bidding on cool stuff. I'll just have to come up with the rest. 

The most naive post I ever wrote

I go in for two tests tomorrow. The doc bets the Monster is back. As Marge said in the movie Fargo, "I'm going to have to disagree with your police work there Lou." Now in doing this I am exposing myself as yet another in a long line of eternally optimistic cancer patients. Some may even say naive. And I will feel embarrassed if this does come to pass and the Monster shows up. But I have my reasons to be more optimistic than my doc. 

In fact, I'm less worried about the node in my neck than about any other node in my body, even though we're doing the tests to see about the node in my neck. Why? Well, it was something that someone in my online Hodge message board brought up. I sent in a message asking for moral support after my ill-fated trip to the doc. Support came poring in. Then one fella left this one simple sentence message saying that the doc could be wrong. It could be scar tissue. 

And well, he's right. It could be scar tissue. That explains a lot. The node is bigger, shaped oddly and is as hard as a marble, just like a cancerous node. But it hasn't really grown much in a month. Last time I relapsed, in one month I went from two tiny nodes to a 10 cm ball in my chest. 

Also, most relapses aren't so nice. Usually, people get sick. They run a temp, get itchy all over and have rashes. I got sick a couple of weeks ago but that was just the usual sick. Since then, I've felt great. I mean, I'm feeling how you normal people feel and I'm really loving it. Man you normal people have it good. 

And then there's the Herlehy Scan. Yes, I made up my own test. It involves alcohol (go figure) but it does have some science behind it. Ya see, the Hodge is the only type of cancer that has a violent reaction to alcohol. Within the first couple of sips you will get sharp pains in the cancerous area. That was the clincher the last time I relapsed. On New Year's Eve, I knew the Monster had come for me and I went into the hospital the next day. 

This time I've had a couple of beers here two different times with the express purpose of seeing how and where I'd react. And no reaction in my neck. Nothing. The Herlehy Scan came up negative in the neck area. 

Of course, the Herlehy Scan came up positive on my right side. And that's why I'm more worried about other areas of my body. I have to score a 100% here. More than Ace these two tests. I don't think I've ever scored 100% on two tests. Anyone who's known me in high school or college would agree that it's a mighty high bar for me. 

So there it is. My pre-scan naive optimism complete with rationale. By doing this, I set myself up for a bigger fall if it doesn't turn out like I expected. 

What do you do all day? I make phone calls and faxes.

Say what you want about the advertising industry but they don't screw up nearly as much. And when they do, people do it with a lot of enthusiasm and plenty of fake smiles. 

So I needed to transfer the scans of tests from MD Anderson to Northwestern in time for my new tests tomorrow. Just a CD in the mail. No biggie. Well, last week I called MDA. Then I emailed three times. Then I faxed. I thought it was taken care of. After a couple of days, I thought I should call to check. They had no such orders. 

So then I had to call and fax again this time to someone else in a completely different department. This time they had it. I needed it Fed Exed to arrive in time for the tests. So they sent it Fed Ex. Five day Fed Ex. I didn't even know Fed Ex had a five day service. Why would someone send something Fed Ex if they're going to use a five day service any way? Technically according to them, it was my fault since in my fax I asked for it to be Fed Exed. They just assume it's five day Fed Ex like that's normal. I didn't know that until I decided to check on Friday. 

So I called Fed Ex to try to hurry the package along. That was fun. After being on hold for twenty minutes, they just hung up on me. Then I called back and told the person I was on hold but got hung up on and the Fed Ex person didn't believe me. Really. She said, "No you weren't." Huh? How does she know this? 

After all of this, I still couldn't get Fed Ex to do anything since I was neither the sender or the receiver. Even though I was doing nothing to the package but hurrying it up and I offered to pay for the service, Fed Ex just couldn't do it.

So I called Marco back at MD Anderson. It was late on Friday but Marco said he'd get on it. I checked on Monday and indeed Marco got on it. He did it. He got Fed Ex to deliver it. And it was delivered.

So I called Northwestern and asked for the person who was supposed to receive it. Oh, well, Michelle isn't in on Mondays. Ah, okay. Can someone else make sure it gets into the right hands? Um, do you know what you're asking for, sir? Do you realize how difficult that endeavor would be? But I got it done. Now all I have to do is make sure we're set to take the tests on Tuesday. We are set to take the tests, aren't we? And what about my medical records? You ave those, don't you? No, you don't. You never got my fax? Sure, I'll fax that over again. 

Well, actually, no. I was told that both my tests would be Tuesday and one right after another. But that was last week. This week things changed. Now I take one test Tuesday and one test Thursday even though they've almost always been done in conjunction. And by the way, thanks for telling me. After a couple more phone calls, lots more pleading and half a day, I got my tests on the same day. 

Now, believe it or not, I have to do everything in reverse for the results. I have to go through Northwestern and send everything back to MD Anderson. So expect a blog about that soon.

And as for the results, well, if everything holds then this will all be for nothing, meaning it will all be one big mistake. It would be the nicest mistake I've ever experienced.

On the other hand, if the scans show that the cancer is back, I will be experiencing this and other similar run-arounds on a daily basis. To get further treatment, I have to search out and then qualify for experimental drugs. That means getting all the information to the hospitals and taking all the same tests each time I'm looking into getting a new drug. It's a full time job and I'm on my own. Doctors won't say, "Okay, you now need to take this drug. I'll call over there and get you in." That's because there is no drug to take that is definitely effective. It's more like, "You want to take that drug? Sure, we'll try that. Why not? Couldn't hurt. Make sure you get those documents in. Have fun with the bone marrow biopsy." 

Tuesday, October 13, 2009

Is this a relapse? The doc bets yes.

Adrienne was a 21 year old Hodge survivor. Man was she ever. She was legendary with the online Hodge community. If you had a problem, you just hoped Adrienne would help you on it and she almost always did. A person asked about a doctor in some town. Adrienne had a list along with some commentary on each. A person asked about a treatment, Adrienne could tell you what to expect in a language the docs couldn't tell you. Her mom and her wrote this one piece titled, "How you know you relapsed." It should be shown to every oncological intern. It was a work of art. I have just that page bookmarked. 

When I was looking into the pros and cons of my stem cell transplant, I asked for Adrienne's help and she came through. Both her and her mom offered advice, asked me questions and made me think. She left me with her cell phone number and her class schedule so I would know the best time to reach her. I never called. I was too intimidated. It would be like having Michael Jordan's personal cell phone number. 

Adrienne spent most of her life with Hodgkin's. She had it since she was nine. Imagine fighting something off since the age of nine. But she did it and with style, never letting the disease control the way she thought about life.

A couple of weeks ago, Adrienne passed away. She died like she lived giving the disease one hell of a tussle. She's the benchmark. She went twelve years. I don't think anyone can beat that. I'd love to be wrong. I need to be wrong. It seems as though that could be my max as well. 

I had been having a hard time with a couple lymph nodes in my groin and one in my neck. Because I'm no longer in Houston, the team at MD Anderson suggested I get a doctor here to look over any kind of thing like this. Today I went to see him. Although he doesn't have any scientific data and is only making a judgement based on feeling a node, noticing how large it is and going through my history, his best bet at this point is that I have cancer once again. I go in for scans and tests one week from Thursday. I'll know for sure then. 

When a soldier gets killed in battle, many of the other soldiers don't immediately think, "Poor George. I loved that guy." Instead, they usually think, "That was a close one. When is it going to be my turn?" Adrienne went down. But I think I just got shot, too. 

Friday, September 4, 2009

Who is NED and does he dance?

NED stands for No Evidence of Disease. It's the term that's often seen on results from a good scan or two. I just got that yesterday. My doctor, who has always parsed his words carefully, said that he "really, really doubts" we'll see a relapse. So, as they say on the Hodgkin's message boards, I'm dancing with NED.

The only bad news is a lot of my lumps are here to stay. I guess Hodge isn't like other cancers in this way. The scar tissue is so big compared to the actual attached organ that it is never able to go away. Blobs and lumps and twisted muscles are here to stay. So what. 

Also, because I have a brand new blood system, I have to get all the shots I once got as a baby. Madison and I will be crying and crying because of those bad, bad shots. But that's not until next summer.

Thursday, August 27, 2009

Madison


This is Madison Claire Herlehy. We call her Mad Dog. She's 7 pounds 6 ounces and was born at 3:59 pm today, August 27th. 

Monday, August 24, 2009

If this is normal life, count me in.

You probably already know about the TV series Band of Brothers. It's about this army company in World War II that experienced many hardships, horrors and triumphs. The hero of the series (and the book the series was based on) was a man called Dick Winters. I desperately wanted to name my next son after him but Sherri didn't want any part of Dick or Winter as a name. The man is a genuine American hero, too. He led Easy Company with character and calm. And he said that all he wanted to do after the war was to find a tiny plot of land and live a real quiet life. 

That's how I feel. I'm home. I thought my war would take three months. I did eight. I'm hoping that's the end of the bombing. It was at times terrible, heartbreaking and difficult. But now I'm home and I'm just looking to spend some time in my tiny plot of land.

My body is starting to feel better. The pain in my chest is different now. It's in a different place and is of a different variety. I think this pain is from the treatment and will go away with time.  

The rest of my body is coming back, although I don't know if I'll ever be able to do many of the activities that I used to before the cancer. I will certainly have a hard time working out. Too many lumps get in the way. As I mentioned in a previous blog entry, a bunch of muscles aren't sitting in the right place.

My hair is slowly but surely appearing. Right now it's peach fuzz. Just to be clear, I'm talking about the hair on my head. The hair on my butt is coming in too but that's not so peach fuzzy. 

I still have other restrictions. I can't be in the sun too long. I'm pretty tired most of the day. Enjoying the buffets at Sizzler is out for now. Believe it or not, there are germs at Sizzler. I know, shocking. I don't have the body to avoid these germs. And I don't think alcohol would be good for me right now. 

I see the doctor after some tests a week from Wednesday. We'll see how I'm really doing then. Trust the scans. I'll be sure to write about the results and whatever else happens.

Once again I'd like to thank all of you who have helped and supported us through this. It's been a shitty ride but you made it less shitty. 

The purpose of the blog was to give you all an update on how I'm doing. Since I'm doing better and getting back to a normal life, I'll probably only blog once a week or so. Please feel free to email me or Facebook me any time if you're wondering about anything in the meantime. Believe it or not, the best therapy for me lately has been to forget that I have cancer most of the day. That way I enjoy the day. I don't let cancer run my life. Writing these sometimes brings me back to a cancer state of mind when I'd rather continue to forget. Also, I just don't have much news to share unless you want to hear about my experience trying to get rid of wasp nests in the backyard. We all have or are searching for our tiny plots of land. I found out the hard way that this is a simple yet great way to live.

Wednesday, August 19, 2009

Did I forget something?

I don't think a day goes by without thinking about at least one or two of you for the many kind things you have done for my wife, family and me. We've gotten great food, fun thoughts, lots of encouragement, hats, cards, plane ticket vouchers (those were especially handy), more food, plenty of emails, an offer to go to England to visit my English family, a ton of baby-sitting hours, advice on nausea, opinions about warewolves at night, many prayers, friendship bracelets, Ronnie James Dio websites and one cool t-shirt that references poop. I don't know if I ever took the time here to thank everyone. Sorry if I haven't. It's a bad oversight. 

Tonight's a bad night. You'd think I'd be so happy and relieved and I am at times. But sometimes I worry that it will come back. This is something I have to live with and control for the rest of my life. Like my balance and coordination, I haven't mastered it quite yet in this post SCT era. Woody Allen and other hypocondriacs wouldn't be good cancer survivors. 

Tonight my neck hurts. It's nothing. I know. The pain results from an old cancer injury. When it was growing like a weed, the cancer pushed my neck muscles on my left side further to the middle of my neck. While the cancer is gone, the tissue remains. 

The tissue all over me has remained. I'm sure many of you have assumed I'd just return to my old self. I thought I would as well. But I'm not so sure I will ever physically be back. The lumps and scar tissue remain. My chest is like driving in Northern Wisconsin--lots of hills nothing much to see. And my lungs aren't the same. I don't know if I'll be able to run much again. 

I asked the doctors and they say what you really don't want to hear and that's, "Well, we'll see." If I can't exercise much I will become what I despise most right now and that's a dumb fat Texan. Yes, I consider my time here to be sufficient to call myself a Texan. This is not something I'm proud of. 

So occasionally my neck hurts or something else hurts. But my mind works mighty fine. And that's a problem because I wonder. Like tonight. I know. It's nothing. Why can't I be a morning person? Morning people worry less. 

How badly do I need out?

I'm collecting states' quarters. You know, the quarters that come with different states on the backsides? Today it was a roller coaster day in collecting states quarters. In the morning I was upset at having to lose Alaska to get a USA Today. But later on I gained a Pennsylvania and West Virginia. That makes my total of around 30. If anyone has an Alaska, I'll trade you a Vermont. 

Tuesday, August 18, 2009

Chalk on another day

It's only a day. But I've been here for 240 days, give or take a week. Today while I was on the phone trying to figure out how to handle my insurance mess with a man named Duff, I was asked by the radiology tech whether I wanted to go next or to cede to the guy next to me. Since I was in the middle of trying to figure out my insurance mess with a guy named Duff, I let the guy go first. He went and then the Proton Radiation machine broke. I waited. And I waited. At five o'clock, after six hours of waiting, I was told that I have to wait until tomorrow--meaning that I have to put back finishing one more day. I was trying to get out of one mess when I ended up in another.

Now, I know. It's only one more day. But please understand. I can't stand being here an extra second. I dread it. I hate it. And if anything else goes wrong with the Proton Radiation machine, I gotta stay until Monday. That will be hell. It's not just like a person in prison being told they have to stay one more day. The person in prison isn't surrounded by old, fat, dumb Texans. Also, I think they have cable in prison, even if the channel selection is controlled by a murderer named Jose. This is worse than prison. Sure there's rape but here there's Bingo night. 

I think I've been pretty positive about this since I've gotten here. You tell me to stay strong. I stay strong. But I can't stay strong any more. Tonight's big event was the hat cart. Did you ever see a bunch of old people at Walmart fighting over the latest sale? That's the hat cart. 

I can't drink this away. It's not a good idea to get drunk. Plus, where could I drink? The bar is already closed.  I'd love to take some heavy narcotics and sleep this away but I'm pretty much immune to any effect drugs can have. And as we've covered here time and again, I can't escape by watching TV much. What am I supposed to do? 

My only solution is Facebook. Yep. I need to bug people on Facebook. That can make me escape. I know. Some of you out there think it's crap. This new technology is keeping us from enjoying life. But make one exception. 

If you have other suggestions, please be my guest and suggest away. And before you offer it, porn doesn't work. The chemo ruined my plumbing for a while. 

Thursday, August 13, 2009

Nothing special

Well, there's good news and bad news. The good news is the bill is down to $114,000. That's the amount they would "discount" us instead of the insurance company. The bad news is it looks likely that we have to pay it. I had to meet with a financial person today and next step is to meet with the CFO next week. He wants to set up a payment plan. I can try to prostitute myself but I don't think many people would be interested in an out of shape bald guy. 

As for my health, I feel really good after I take my nap. The problem is, my nap usually lasts until about 4 pm. That means I'm up late at night and into the morning hours. Feeling good is rare so I get really excited and want to do something. But there's nothing to do besides Bingo at the Rotary House. And now it's late and there's nothing to do in the world but sleep. I can't sleep. I feel good. Do you know what it's like to feel good after you've felt like crap for two years? It's amazing. Heavenly. You feel alive. No itches. No pains. No growing old too quickly. You people who feel normal are awfully lucky that you get to feel normal. I can only feel normal for half the day. But I'll take it. 

Today I heard the Beatles while getting nuked. I only have one week left. After that I will be a mere visitor to this city and no longer a resident. I will miss Taco Cabana and Chick Fil-A. That's about it. 


Monday, August 10, 2009

Only $5 million to go.













I had the weirdest dream today. I dreamt I owed the insurance company $525,000. Wait, that's true. I do owe the insurance company $525,000. They sent me a letter saying so. They want their money in $25,000 installments. 

By now I'm sure you're pretty familiar with the health care debate. I'm not here to change your mind but I am here to dispel one myth. And that's the fear that some bureaucrat will end up making life or death decisions for you with this new evil "socialized" medicine. Oooohh. Just the name scares me worse than the boogeyman or a naked Rosie O'Donnell. 

The fact is, some bureaucrat already is making that decision and this is a good example of how. My doctor is the head of Radiology here at MDA Anderson. I hear he practically built the department. The guy has more than thirty years of experience in radiology. He glows radiology. But I guess his opinion isn't enough. 

The insurance company decided that there wasn't enough literature about the benefits of Proton Radiation Therapy. So they ain't paying. Well, they are right. There isn't a lot of literature. But that's a good thing. Ya see all you healthy bodies out there, your care is actually about ten years behind. That's right. For any good therapy or medicine to get to you, it has to have lots of trials and experiments to pass FDA approval, have lots of trials and experiments after that and then finally be an accepted practice by governing medical bodies. That takes a while. So what you get is old medicine. It's safer. Nobody gets sued. Unless you come to a place like MDA. Then you get the latest and greatest. The only problem is, it's not run through the medical gauntlet. And sometimes insurance companies think they're smarter than the smartest medical people in the world here and over-rule them. The bureaucrats decide. 

Of course we are going to fight it. The key now is to stay alive. It would be one heck of a parting gift for my wife to have to sell a lifetime of savings to pay for a dead husband's former treatment. And college? Well, Conner's working on his curve ball. McKenna will have to join a rock band and hope for the best.

Besides a big IOU, this new therapy officially makes me the new Million Dollar Man. My stem cell was up around $350,000 and then there's the treatment I've been receiving before and after. Adds up to about a million or so. They won't make me bigger stronger and faster but they will make me portlier, more sarcastic and lumpy. A million dollars ain't what it used to be in the seventies. 

What's even funnier (and let's face it, owing a half million is very funny) is what MD Anderson was telling me when I had to sign the form to get the treatment. They said that the price is what it is--to the insurance company. But if I had to pay, they would find a way to bring it down. Ya know, negotiate. So our premiums are high because hospitals stick it to insurance companies who stick it to us. You see, funny. 

Other than that, today I finished my fourteenth treatment. As the poet Bono once said, "My body now is begging, is begging to get back, to my heart. To the rhythm of my soul. To the rhythm of my unconsciousness. To the rhythm that yearns to be released from control."
 

Thursday, August 6, 2009

Sick of being Sick

Feeling like crap again today. Puked up lunch from Subway. It wasn't eating so fresh the second time around. The novelty of this cancer thing is wearing off. I'm really tired of having to hold in my puke all the time. 

Does anyone out there have Restless Leg Syndrome? If you do, then you will understand that my body feels like your legs while on RLS. For those of you who don't have it and can't find an opening in a conversation to casually ask someone who might, my body feels really anxious. It's like everything is new and not comfortably old anymore. When I was younger, my dad bought this John Deere Snowmobile, or as our next President Sarah Palin would say, "Snow Machine". The first time we took it out, we couldn't really let loose. The guy at the dealership told us to take it easy for a bit as the parts are still new. That's my body right now. I can't get comfortable because my parts are still new. 

Thankfully, I'm past the halfway point in my radiation treatment. Only ten left and I can finally go home. Today I enjoyed the sounds of Credence Clearwater Revival. Yesterday was a mixture of all kinds of oldies. And last week, why, we had some Kenny Rogers. The Gambler had a string of hits, as you'll recall, including the duet, "Don't Fall In Love With A Dreamer".  Just at the crescendo of that song, Kenny sings the line, "If I knew what you were thinking girl, I'd turn around, if you just asked me one more time." The black girls who were my techs for the day took umbrage with that line. Here's how the conversation went, word for word:

Girl 1:  He say what?
Girl 2:  He say if she axed him one more time, he woulda stayed.
Girl 1:  Why she got to axe him? He knows she loves him. I wouldn't be axing no guy to stay if he don't want to.
Girl 2:  You said it girl. A girl gotta have respect. 
Girl 1: Uh-huh. Axe him. I won't axe nobody.

One last thing that really bummed me out. Last night I found out that a guy who had a really similar case of Hodgkin's has recurred yet again. He got a "tandem" stem cell transplant earlier this year. Big shame. Hope this isn't an omen for me. I am itchy again. 

Wednesday, July 29, 2009

Yes, I'm alive


The hair on my butt is growing back but the hair on my head isn't. Such is the life of me. Sorry to not have written but I was in dispose, as in curled up in a ball wishing that bad nausea demons would run away. Today they did but they'll probably be back. 

I've started my proton radiation treatment. I talk about Star Trek and how the other guy would always die and never Spock, McCoy or Kirk and why would a recon party be sending a doctor and only two or three other people? Why would they need a doctor on a planet when you could just beam the person up if they got ill. Plus, he's carrying a laser gun and according to the Geneva Convention, medical personnel shouldn't be carrying firearms.  The radiation people just look at me funny. 

I lay on a bed for an hour. Enclosed is a picture of the monstrosity. I have to be still for the whole hour. And ladies, I'm shirtless too. It doesn't hurt much. I get a headache but that could be because they play all oldies music. Best of oldies too. So far, I've been able to enjoy the musical libraries of Poison, REO Speedwagon, Van Morrison and Gordon Lightfoot. Nothing quite like the weirdness of hearing Gordon Lightfoot while getting millions of molecules of radiation beamed into you. And although it is incredibly tempting, you can't start that toe a tappin when you hear, "Sun down, you better take care..."  

It should only take about fifteen minutes but they're shooting four different areas. I keep hearing, "Wow, you're a pretty extreme case...but I've seen worse." The last part is supposed to make me feel better and I applaud the effort but it doesn't. I feel like I got an F on a paper and the prof is basically saying that I'm not the dumbest person he's ever met. 

I sort of got the breakdown of what proton radiation is and it basically kills the stuff you want to kill and doesn't kill as much of the stuff you don't want to kill. Like lungs and hearts. Being in advertising, I've long lost my heart. And if you've seen my ruthlessness on display while playing the game Sorry, you would certainly agree. Many have sobbed uncontrollably while I send them back to home base yet again.

The Rotary House hasn't changed. I don't think it ever does. My wife was exactly correct in describing it as a retirement community. Tonight they had Wii games and Bingo. I really wanted to trash talk my way through a mean Wii bowling game but had to pass as it was the same time I got zapped. 

I'll be doing this until August 20th. When you "graduate", you get a certificate and get to bang this big gong. The last time I got a certificate I was finishing up the first round of chemo way back when they said I wouldn't have cancer again, a year ago. I puked on it. 

The late end date means I'll probably miss the birth of my daughter. So far, only one of you fellas has volunteered to sit in. A bunch of you gals have which makes me wonder about your preferences, but hey, eventually we'll be more excepting of your kind and let you people get married legally. So basically, we'll be birthing old school with the woman in the birthing room and the dad somewhere off at a bar or something. In this case, the Rotary House lobby.  

Now that I'm feeling better, I'll try to update happenings more often. Thanks to everyone for wondering if I was okay. The answer is no, I wasn't okay but now I'm better. Some of you have wondered more passionately than others. Sara Leopold took the opportunity to make fun of me which isn't very nice. 


Tuesday, July 14, 2009

My tests are in.

I'm feeling very tired and sick tonight. My white blood cell counts were again hovering around the Barely There mark. And I just finished receiving a drug that keeps me from getting pnemonia sick but gets me pukey sick. So I'll keep this short.

At 12:30 pm and after a two-hour wait, I finally saw my stem cell doctor. He's going to Spain for two plus weeks. Oh and he said that I no longer have any cancer in me. My body did a Last Call and they had to leave. That Closing Time song played on the juke box, too. 

If I had received the typical chemo treatment there would be an 80% chance they'd show their malignant heads sometime down the line in a couple of months or so. But now there's less than half a chance. The best odds in Vegas is playing the Don't Pass line. I think it's 45% so I have better odds than any pit boss would allow. 

My odds get slightly better because for the next month I'll be here getting Proton Radiation treatment. I start that next week. Right now I just need to sleep and puke. 

Tuesday, July 7, 2009

Why I'm a pig.

I read somewhere that pigs actually make better lab rats than lab rats. I guess it's because a pig's DNA is strikingly close to a human's. So when some scientists need to try out something new aimed for humans, they go to the pig. In this sense I've been doing pig's work for the last month and I just found out today that I will be spending another month pigging it up. By the way, pigging must be a real word because it cruised by spell check. 

First I'd like to thank the many people who expressed concern over my absence. I'd also like to thank my two guest bloggers, McKenna and Sherri. One of them was a little feisty but that's why I love her. 

Well, well, well, I've had quite a summer so far. They admitted me into the hospital sometime in June. The first two days they gave me a shot that limits mouth sores. A side effect of it was a full body rash that itched like a dog with a bevy of fleas. To help alleviate that, they'd give me other medicine with side effects. In fact, I'm just about side effected out. I think there should be a special area of medicine called "Side effectus" or something with better Latin. 

The next week was then spent getting a chemo a day and all dripped from an IV. As I mentioned in an earlier blog, they'd start it all out at about 3:30 am. That's an MDA thing. They say that people have more of a tendency to sleep through most of it at that time and that's a better thing. The chemo settles better, people don't freak as much, etc. After the first night or so, they're actually right. Still, I wouldn't want to have been a pig in that study. 

Once all the chemo was in me, I got my stem cells. There was no birthday party. No cake. No hats. What tradition started the wearing of coned hats on birthdays anyways? Who was the person who thought that was a good idea? Anywho, I digress.

After that the fun started. The chemo "settled in". Now, luckily, because I was a lab pig on a clinical trial, I was given chemo that didn't make me puke. So even though I've been nauseous almost every day, I have yet to see my lunch a second time. 

I don't know exactly when it happened but within days, I was pretty pathetic. I could barely get out of bed. I stopped eating anything. My body felt like it was dead inside. Try this as an experiment. Close your eyes. You still see images among the darkness. Those images are moving. When I was at my worst, I hated to close my eyes because those images never moved. They embodied the term deadly still. A small thing, for sure. But I've realized that there's movement in my body that helps me feel alive. For a few days, I didn't feel any of that. Very creepy and depressing.

Others, however, got me moving. Every Monday, Wednesday and Friday at 2 pm was exercise class. Picture a senior living home's aerobics and you got the idea. I was one of the seniors, only without the embarrassing leotard. Lift your leg two, three. Down two, three. It was grueling. I once ran two marathons in one summer and here I was barely able to lift my leg two, three. 

Every day you're supposed to walk the halls, which aren't very big. Not everyone does it. If you do, you get this circle of paper they call an M & M. Walk the halls 15 times and you earn a bandana. I got two, one for each of my beautiful and patient children. Madison is going to have to get her own.

After a three weeks of being in quarantine, I was able to leave. I was free. Being in my Rotary House hotel room makes life a little easier. But I still don't feel a ton better. Somewhere along the line my tastebuds went for a powder. I can't taste a thing. I smell stuff and boy does it smell good. But when it goes in my mouth,  it tastes like paper, water or chemo medicine. Mostly chemo medicine. They say this will last for weeks and say it like it's no big deal. But they don't understand.

Eating is one of the great joys in life. So is sex and kids and exercise and TV. I got none of that right now. I got Houston and the Rotary House. Today was a magic show in the lobby.  Until the Elvis Impersonator comes, that's as good as it gets. Forget about the pain of chemo. Just consider going without these other joys in life and you will realize just how barbaric and difficult chemo is.

My chest pains are back. Now, this could just be because so much carnage happened inside that it just plain hurts. We'll see next week. That's when my tests will come in. That day will be, quite frankly, the most important day of my life because it will determine what I do for the rest of my life with regards to this monster. But that's next week.

Today I learned that I will continue to go the experimental route. The folks in radiation want to blast this pig with Proton Radiation Therapy instead of traditional radiation. This is only done in four places in the US. The big benefit is that it is more targeted and limits the area of damage that happens with radiation. Because the area that needs to be zapped is all around my heart and lungs, they thought I might be a good candidate. I'll be taking tests for that next week. 

You're probably sick of me right now so I'll go away. I can't promise when I'll write again. The only reason I'm up to it now is because I got a shot of a medicine that accelerates white blood cell generation. I've been low lately. Maybe I can borrow some from a pig. 

Sunday, July 5, 2009

The Good, The Bad and The Ugly--The General's Version


Yes, I know that Michael has used that title before and it may seem that I am not being very creative which I've warned you all is not my forte; but mine refers to the caregiver role and all that goes with it. Well not quite. 

All the literature that they give you at MD Anderson says that the cancer patient should chose a caregiver that they can get along with and easily resolve conflicts but they do not tell the caregiver how to deal with family. I have established myself as somewhat opinionated, protective, strong willed and perhaps somewhat stubborn when it comes to my family--that being Michael and my children. I totally relate to that mafia mom on the "Real Housewives of New Jersey", she's just taking care of her family. As any parent knows there isn't anything you wouldn't do for your child regardless of how old they are. I know that if any one of our children were going through anything remotely as horrific as Michael has, we wouldn't leave their side--ever--regardless of a meeting or work issues. Because, lord forbid something ever happen to them, are you going to look back and think, "I wish I would've worked more?" I don't understand that at all and yet I get that a lot from Michael's mom. 

I am often told that Michael was his mother's favorite. I find that very hard to believe. She is currently not speaking to Michael or me but then again, she never really wanted to talk to him when she would call the house to get updates last year. I found that very odd but then I thought maybe she is just uncomfortable with the situation and doesn't want to deal with it. Now I know she just really cares about herself. Every conversation, every situation switches to her. You know when you are in the delivery room and your child first cries and you hold them, you think there is nothing you could love more in your entire life--I don't think his mom had that feeling because it is one that never goes away and how could any mother not help their son when he asks for it. It is appalling behavior and completely unforgivable in my book! To me, she is the ugliest person in the world. The fact that she has never once actually called him but instead relies on emails like she does for work speaks volumes. I feel like Clint Eastwood right now--bring it on sister--"Make my day!"

Now I do have to say that Michael's dad is trying and I give him props for that but it took more than it should have to get him to realize the severity of the situation. And Michael is such a sweet, forgiving, laid back and nice person that he can let that go but the general will never forget this one. I am usually one to just let things go but I have been typecast as the "Bitch" to his family for at least the last 10 years and I am so appalled by the behavior at times that this will be etched in my memory for years to come. Unless I really do get that brain cancer that I have told Michael I have for the last 19 years--which I can't really say anymore since he actually got cancer! I know that sounds really morbid but Michael gets it (the joke, I mean).

Perhaps I should have prefaced this whole rant by explaining that I think you should be able to say anything to your family. If you can't say it to them, who are you going to say it to? (either you complain to your friends or your therapist). Communication is key and I have learned long ago that both sides of the Herlehy clan prefer passive-aggressive behavior as opposed to honest communication which I believe is why I come off as the bitch to them...things come out of my mouth that surprise them but are expected at the Penegor house (that being my last name). It is very exhausting to figure out what they really mean--why can't y'all just say it--I have enough on my plate I have no more energy for the games!

I have known Michael for 22 years and I knew after a week that I would be with him for the rest of my life. I was very smitten with him--he was so charasmatic, funny and worldly to me--I was from Wisconsin, he was from Chicago; enough said. I told all my girlfriends and one of them even tried to hit on him after that--yes, I did forgive her, I knew she didn't have a chance! After a month, Michael was going to dump me (shocking right?) but then divine intervention stepped in. On the day he was going to do it, he had a little accident--paralyzed for a bit and ended up with a bruised spinal cord and in the hospital for a week--he never got the chance. He is the most caring, giving person I know and the best father any kid could ask for and I don't know anyone who doesn't love him--except for my brother Rob, but he is a drunk! I often think there was a mix up at the hospital because he is very different than his family. Like that Sesame Street game "Which of these things is not like the other". Michael's the "thing".


Saturday, July 4, 2009

DADDY COME HOME!!

Daddy if ur reading this then PLZ COME HOME! U r doing great at Texas. Me, Sammy, and Carena need to show u and every1 else our "Closer" dance. We r going to have an after party and every1 who surported u will come to the "After Party!!" u'll be a : ) person after the cancer. At the after party we will make ur favorite foods: Muffins, (made by McKenna) Brownies, (made by McKenna) Cookies, (ecsepcaly chocolate chip cookies) and many more!

We would also like gift bags with Chicgo stuff in it

Friday, July 3, 2009

Guest Blogger--The General

I know for all of you following this blog, you knew this was coming. Everyone had been warned that there would be a time when I would fill in for Michael when he wasn't feeling up to it and that time has come. I have been receiving phone calls since its been awhile since his last posting so this will help update everyone. The warning is that I am nowhere near the writer that Michael is and let's face it, he is funnier than I am (honey, you have that in writing!)

Quick update is that Michael finally got to leave the hospital on Tuesday and is now resting comfortably at the lovely Rotary House. While it is nice to be so close to the hospital, the Rotary House is senior living at its best with the absolute worst cable in the world. The road to his recovery is filled with peaks and valleys--everyone at MD Anderson seems to like that phrase; although, I think I used it first. There are good days and bad days--just like this entire speed bump in our lives. Yesterday was a good day and we actually went on a "date"-- lunch and a movie. Unfortunately for Michael, he doesn't have any taste buds right now and swallowing is still an issue but he can taste ice cream sandwiches and who wouldn't love to eat those all day long! While I think a comedy would've been a good choice for the movie, we decided to see "The Stoning of Sonoyara M". We thought being in Texas, we would be the only ones in the movie theater but there were probably 10 other patrons opting to see a movie about Iran with subtitles no less. Now during the most emotional and dramatic scene in the movie there happened to be a woman sitting directly behind us who was sobbing for 10 minutes and when she started moaning, Michael couldn't hold back the laughter. Inappropriate as it seemed, how could you not laugh! Plus, it made the date all that more memorable; although every date with Michael is memorable (even after being with him for 22 years!)

Sunday, June 21, 2009

The Bible says nothing about elves

If I stick my leg out of my bed to the right, I would be able to touch the door to my bathroom. Still, yesterday morning it took all the energy that I had to get to that door. It's probably three movements in total. Getting there was important since everything I ate, or tried to eat, essentially went right through me getting runnier, noisier and more violent as it continued from my stomach on down. I had to make that trip eight times that day. But enough about poop.

Since I last wrote, I've been in pain. The chemo settled in alright. In fact, if any cell grew on my body, the chemo slaughtered it like it was a scene out of the Old Testament. Before even getting to my belly, I would be able to follow the path of any morsel of liquid or solid food stuffs because it laid a passage of needling pain. My tongue felt like someone cut if off, another vague Biblical image I might add. And while I don't have any mouth sores, my mouth is still really, really sore. 

My belly would give me sharp pains throughout the day as a response to not having any blood cells to fight an infectious disease. My feet and hands feel like their grazing the tip of a knife. I would say they feel like someone is pounding stakes into them to continue this biblical theme but that would be overstating it a bit too much even for the sake of continuing a theme.

And boy have I had fun with side effects. I keep getting red all over my body. So it feels like I got sunburn all over. In Houston that would take, ah, a trip from the Pizza Hut to the car in the parking lot. My bald dome is filled with zits ( as a result of a virus) and can drive me nuts with itching. One night a doctor (I'll bet it was really a PA) said that there was nothing to give me besides Benedryl (that all-purpose drug again) and so I spent a night with a wet wash cloth on my head.  

Through the days and nights, I never puked. I've been close even earlier today but a combination of science (nausea drugs) and Michael science (munching on cereal all day even if it hurts to swallow) might have done did the trick.

My time has been spent like this: get out of bed and into a shower about 9 am after not sleeping most of the night; take shower, sometimes sitting; get out of shower and onto a chair for an hour; try to go for a walk around the ward and think about ordering lunch; don't order lunch; go to an "Exercise class" which is basically a class that gets you to move muscles; get back and nap; stay in bed rest of day and night. Now, generally, I would find this routine to be the most satisfying of anything I could possible do only there's that bit of cancer. Cancer can even ruin some good off-time.

On only a few occasions did I just lay and feel miserable. Usually, I tried to keep my mind occupied with kiddie porn and elf sex. Okay, not elf sex all the time. Actually my dad came down and now my beautiful and brave wife is here. Everyone keeps telling me that I'm courageous. She's the hero. She has to be Dad and Mom to two kids, while pregnant, fly to Houston to play Dad and Mom to me, keep the house in order, schedule babysitters and kid routines, fight with insurance companies and assorted medical personnel and oh yeah, keep it all together. That's more hero than most people I've ever known and certainly more admirable than my situation. I'm just sitting here feeling miserable and watching elf sex. 

Right now, the pain is subsiding a bit and my energy is picking up at least enough to write this. As you can guess, I'm probably over the rough stuff.  Even though I'm almost continuously on pain meds now, I'm not as pained when on them. I still can't sleep because now they have me on a new steroid as well as a whole new bucket of pills. We got stuff for my liver, more stuff for my stomach, stuff for my mouth, stuff for my hands and feet. They just bring them in. I swallow. 

Saturday, June 13, 2009

Day -5: Celebrating with the Rolling Stones

One of the most effective weapons in the mighty arsenal of the US Armed Forces isn't a weapon at all. It's music. Every once in a while you'd hear this story about the Army or Marines ready to do battle somewhere and they'd blast music through their loud speakers. They aren't be psychic-ing themselves up. They're playing it for their enemies. 

Don't think it's a Miley Cyrus song either. No, when you're about to commit unbelievable terror on a bunch of strangers with guns, what is the appropriate tunage? From what I heard, it usually has something to do with Ronnie James Dio. A scared Arab fella might have heard a Miley Cyrus song or two or at least one of the millions like it. But he's never heard the horrific noise of a Dio song. Forget "Arab fella". It can scare the crap out of any of us. 

So at about three o'clock today, right at the time when this not-going-outside-the-floor, body-withering, nausea-and-crappiness cocktail thing is starting to get to me, I decide it's time to inflict pain on someone else. Now, the nurses here are very nice. At least that's what I can tell when I understand them. Many are from another country. And while my doctor doesn't really say more than three sentences to me and just the other day was so annoyed at my questions that he literally walked out of the room while I was in mid-sentence, he is saving my life. So they're all out. 

I couldn't go outside to find a stranger. I was left with one choice--the cancer. Yep, the nodes were gonna get it. But I had no Ronnie James Dio. Most of you would consider that a welcome trait, especially if you've ever heard him. I don't think he'll be coming out a Christmas album soon. Some of you (okay, only Glenn), may disagree. So I did the next best thing. I pressed shuffle on the iPod and what would you know, Sympathy for the Devil came up. This was the live version. Enough noise to disturb the cancer especially when you turn it up to eleven, which I did. It was a beautiful moment. Take a little of this. 

Other than that, life here is the same. It's the same because it is as controlled an environment as anyone can create without a revolt from the inmates. A hurricane came through Houston last year. You would think it was sprinkling outside if you were in here. In the meantime, my own body is purposely heading south. At least I'm humming. 



Friday, June 12, 2009

Why sleep?

It's almost 5 am. The Prednisone and constant itching have kept me up all night even despite two Bendryls and a Lunesta. I have another dose of chemo at 5:30 so it looks like I'm up for the day. 

I'll see the sunrise soon although I can't say I'll enjoy it. Even when I'm not getting a blast of chemo, I think sunrises basically suck. If you see one, you've either stayed up way too late or got up way too early. Neither has anything to do with a pleasant feeling. 

Chemoheads see a lot of sunrises, as noted whenever you see the bags under their eyes. If it's not because of the drugs that go in their body, it's because of the thoughts that occupy their mind. I remember staying up all night a few times the first go-round with chemo. It seems like a long time ago but was only less than a year. 

The last time I was up all night was a few months ago after I came home for the weekend. I can't say I can blame this one on any drug. This was purely angst. The first person to get up was McKenna. She was half asleep, her hair was all over the place and she just said, "Daddy." All that angst the now previous night went away with one word. It was worth staying up all night to experience. Some sunrises don't suck. 

I've lost the sense of taste. That's supposed to happen. The tastebuds aren't regenerating any cells. Next I'll be getting mouth sores. At some point after that, they'll feed me through an IV as I won't be able to eat anything.

My wife leaves for home later and I'm on my own until Sunday when my dad arrives. We found out that I can leave the floor but only under certain circumstances. Certain circumstances include going to a Tai Chi class. There really aren't a lot of other certain circumstances. So, as Sher said, I'll get to "work on my center" in the next couple of days just to get away from the monotony of living in my room and floor. The big news around here is a couple of people are getting tested for swine flue. 

Enclosed is a picture of my current home. No bubble. Just a plain old hospital room. The hot chick on the chair is my wife. The light is from yesterday's sun. 

Wednesday, June 10, 2009

My drugs today

Here's a list of what I'm taking on Day -8

Prednizone: 
A steroid that helps with nausea but keeps you jittery.

Zofran: 
A drug that helps with nausea but gives you a headache.

Palfermin: 
Helps you avoid mouth sores.

Benedryl: 
Ya know that drug that helps avoid mouth sores? It gives you rashes over the rest of your body. This drug helps get rid of the rashes.

Gemcitabine: 
Chemo drug. Kills cancer.

Busulfin: 
Chemo drug. Kills cancer.

Dilantin: 
I guess there is a slight chance of getting a seizure with chemo. Five of these pills keeps this from happening.

Valtrex: 
Keeps you from getting a sore mouth or sore gut. Bad for the liver. Like that matters at this point.

Nexium: 
Coats the tummy.

Lunesta: 
Because the side effects from the other drugs can cause you to not be in the mood for bed, there is an option to take a sleeping pill. Sometimes I'll take it. Sometimes I won't. Still don't know about tonight. 


The funny part is, they don't want you taking an aspirin. All these drugs and you can't even take an aspirin. 

Fun in the dead of night

It's just about 3 am. I hear them preparing the chemo outside my room right now. They're supposed to start at 3:30 but may be running a little ahead. That's fine with me. Can't sleep anyway. 

The first IV bag is the anti nausea drug. The second bag is a steroid. The third is my first high dose of chemo, the lovely gemcitabine. I won't sleep for the night. The steroid will keep me up the rest of the way. 

It's now me versus the sickness. Six months of getting to this point, to able to have a chance to live. I didn't know it would come at 3:30 in the morning with a body that's beat and a mind that's dead tired. Ground control. This is Major Tom.

Tuesday, June 9, 2009

The calm before the storm. The boring calm.


I'm on Day -9. It's really boring and it's reminding me of prison, besides the butt raping and being stabbed with a shank. The room is as small as a cell block. You aren't allowed to go anywhere further than your own floor. There is no hard labor or guys asking you to be their bitch, but you do have chemo, which is worse. 

I'm even shackled. I'm attached to an IV pole and will be for three weeks. It makes doing anything a pain. They say you should give the IV pole a name because it's with you so much. I'm calling him Bill. He doesn't really say much. He's not spectacular. He's just sort of there. Sort of like a Bill (the exception would be Bill Hughes, of course). 

And like the overcrowded prison system, the stem cell transplant system is bursting. They put me on an overflow floor which is supposed to be used for gynecology radiology. But it's being invaded by stem cell transplant patients. Speaking of gynecology radiology, any single fellas out there want to me to find them a good lady who's been through a rough patch, I can do that. 

The pokie is scariest at night. So is this. Why, I already had a run-in with three nurses and two needles. Nobody could find a vein. Chemo makes the veins really hard and bashful. It takes a real pro to get a needle in. That's something that's universal with cancer patients and we all enjoy talking about our experiences like prison mates talk about theirs. It hurts like a motha. 

So here I am. Doing time. Working on the railroad. Listening to some Johnny Cash. Enclosed is a picture of one of the greatest prison movies of all time, the Shawshank Redemption. It's a close call between that and Papillon. 
 



Thursday, June 4, 2009

Now I'm a nuclear guinea pig.

Assuming everything goes right, I'll be getting radiation treatment starting around July 17th and continuing through mid-August. That's what I learned yesterday in between taking tests. It means almost the whole summer will be spent down here in scenic Houston. Ya know, it's so disgustingly hot already, I don't see the point in having a radiation wing at all inside. They should just tell people to take a walk down to the Taco Bell. 

Unfortunately, this timing could cause me to miss the birth of my third child. I guess I should be more upset about it but I figure it would be better that I take measures to stay alive for the rest of her life than to make it to her first couple of days. Plus, by her teenage years, she's going to hate me and this gives her a reason right off the bat. 

Until this point, my wife has only vaguely considered the idea of a stand-in for the birth. Obviously now we're going to have to look at that more seriously. I'm going to take the opportunity here to guess on some criteria she'll be looking for. The person should not be squeamish, know when to make fun of my wife for comedic purposes and when to shut up, promise not to pull any lamaze crap and should not show up drunk or on drugs (although leaving drunk or on drugs is acceptable). 

Today I took one last scan and met with the stem cell doctor. The good news is my scans show that the cancer is barely kicking, even in it's death-throws. The bad news is it's still there. Although my neck is still killing me, nothing cancerous showed up on the scans and I do as the docs do--trust the scans.

Treatment officially starts tomorrow. I'll be getting three hours of a drug that keeps me from getting mouth sores. Apparently throat and mouth sores are one of the biggest problems with high dose chemo. It's not the nausea. My doc says nausea doesn't increase with higher doses of drugs. It stays the same. Once again, I said apparently. I told him that I get pretty nauseous and then curled up into a ball and hid in the corner, mumbling how precious I was. Ironically, this drug, the one that keeps you from getting too many mouth sores, makes you nauseous. I can't figure this thing out at all. 

On Sunday I'll be admitted into the hospital, hopefully beginning a three week stint as Bubble Boy. The blogs may be getting even more boring than this one as my brain will be scrambled. I'd like my wife, dad or sister to fill in but I'm not sure if they will be able to understand the high-tech world of blogging.

Enclosed is a picture of the drugs that I use regularly. The collection will be getting bigger once the stem cell transplant process starts. This is just what I have before. 


 

Tuesday, June 2, 2009

I'm a guinea pig

MD Anderson has different plans for me. I am to enter a clinical trial this weekend. Because my particular lymphoma has a tendency to come back and be nastier even after a stem cell transplant, the doc decided it might be more beneficial to enter me into a trial that included higher doses of a different chemo drug. It's still a stem cell transplant. The difference is in the drugs and the dosage amount. I'll be in the hospital for almost all of June. 

I got lucky. The other patients in the trial received higher doses and went through a lot more pain. They even stopped the trial to reevaluate things. I'm getting a lower dose, although still high enough to do some ugly.

This is, at first, quite alarming. It can remind anyone just how bad this cancer is and in some ways, how dire the situation is. After all, you gotta be pretty sick if the doc thinks you're better off in an experiment. But it also is reassuring that I'm at the right place. They're trying to give me better odds. It may be tougher, riskier and more painful, but I'll take it. This is assuming, however, that I pass all the tests. 

The first one was today.  The planned bone marrow aspiration turned into a double bone marrow aspiration and then a double biopsy. They stuck a needle into the bone in my hip, sucked out the marrow and then chipped off part of the bone for the biopsy part. Then they went to my other side and repeated the process.  I mixed in hairy butt jokes with a liberal use of naughty adjectives to get through it. Instead of getting a sticker or sucker afterwards, they showed me the bone chips and told me not to take a shower or bath for two days. 

Tomorrow I go for a bunch of other tests: PET scan, lung test, heart test. I'm in the middle of a protein-only diet tonight.  No carbs at all. No sugars. Just steak and fat free jello. 

My neck is worse. Now the nodes under my chin are enlarged. That may not be bad as it could just mean I have a cold. The PET scan will tell but I won't know for a couple of days, unless the tech says something like, "Holy crap. Look at those nodes!" Then I'll know. 

Enclosed is a picture of Alice from the Brady Bunch. The answer to Sara's question, "Which episode did Alice hurt her back?" is, quite simply, an easy one. Amateurish if I might say so. That would be the Hawaiian episode. She threw out her back because she was doing the hula. Sara, a better question would have been, "Vincent Price appeared on that episode. Name at least three other stars to make cameo appearances in Brady history." A hint for one is he got really drunk on national television last year. 

Monday, June 1, 2009

Too tired to write full sentences

Bad day today. Neck is really messing with me. Very sore. The muscles are twisted. Now my throat is sore too. Every time I feel my sore neck, I worry about my sore neck. And that's all the time because it's always sore. Doesn't bode too well for the stem cell transplant if something is still growing somewhere inside there. 

Face a bone marrow "aspiration" tomorrow, which is where they stick a needle down into your hip and then suck the marrow out. Very painful and mentally tough to get through. Have to outlast something similar every day through Saturday. Gotta find it. 

Found out someone else on my Hodge message board died last week. He helped me out when I had a couple of questions. Very nice guy. Only a couple of months ago he seemed okay. Not a good day when you find others with your disease go down so quickly. 

My dog Nala came to the back door this morning with a dead bird in her mouth. She then ran over to some tree bark and buried it. A little later, she dug it up and then buried it again. I feel like that bird. I hope the monster is not in my neck. 

Thursday, May 28, 2009

Welcome to Day -15

This morning at 10:15, I got a call from Fonzi, the stem cell co-ordinator. He looks nothing like The Fonz. In fact, he's black so he would be the first and only black Fonz if that's what he wants to be. But he doesn't seem to. He's obviously missing an opportunity here. 

I will be admitted into the hospital to start high dose chemo on June 8th. And it couldn't come sooner. My neck is constantly a bother. It doesn't hurt so much as remind me every waking second that I have cancer. I also know the rest of me is on borrowed time. Even though I am in partial to near complete remission, it's just a break in the action. The cancer will come back. And next time, it'll be pissed off. 

I look forward to sleep now because that's the time when I don't have cancer. You can probably understand it like this. When you're away from home and you dream about home there's a startling few seconds when you wake up. You have to make adjustments and get your bearings. I do that every morning. Only instead of dreaming about being home, I dream that I don't have cancer. When I wake up, I'll get that pain in my neck and a sharp jolt from the chest and within seconds I realize I'm back again, stuck with the Monster. Mornings are tough.

The call from Fonzi does mean that we start the countdown. With every stem cell transplant there is a "countdown" and then a "count up". I think they do that for some medical reason or to help patients. For your understanding, I'll try to relate what I know what will happen with my own days. Since I've never been through this before, I'm not entirely sure. But I believe it goes something like this:

Day -15: Get a call form the black Fonz, even though he doesn't want to be called the black Fonz. Afterwards, go into procedure room to replace the line that goes from the right side of my chest and into a vein above my heart with a smaller line that goes in the same place. 

Day -14: Get root canal. Piece of cake. No, really. After nearly twenty doses of chemo, two bone marrow aspirations, countless procedures to put lines in and out of my body and the pain of trying to make small talk with Texans in elevators, this is nothing. 

Day -13 to Day -8: Fly home to see the kids once more. During this time, pick the last remaining hairs out of my head. The last two times I lost my hair because of chemo, I never admitted to myself that it mattered. I look like crap with or without hair. And besides, the ladies never really care about looks anyway. But I've realized that it does affect me. When clumps of hair fall out it's disconcerting. It reminds me that something else on my body isn't working any more. It reminds me of the pickle I'm in.  

Day -7: Come back to Houston for "pre-tests". 

Day -5: Begin high dose chemo. I'll be hooked up to an IV drip. They'll start the anti-nausea drugs first and then the steroids. A couple of hours later, the toxins begin. My brain will become numb around the steroid stage. I will feel nauseous before even starting. 

Day -4: Puke. 

Day -3: Begin fighting off the inevitable, which is the slow death of my body. The biggest change will be the loss of a digestive tract. My mouth will have sores all over. Then the rest of the digestive tract will have sores. At some point, it will be too painful to even eat a crumb. Then I'll have to go on an IV.  Morphine will probably start. I won't be able to poop normally. Breathing will become difficult as the lungs are affected by the chemo, too. I'll have to watch my kidney. It will be hard to walk around, anywhere, as fatigue becomes a big issue. Even though I'll be tired, I won't sleep without the aid of some good drugs.

Day -2: Puke. Ask for more morphine.

Day -1: The chemo drip ends.

Day 0: Get my stem cells. You know that harvest I talked about in the last blog? The lame Keanu Reeves reference? Well, those stem cells are frozen and here's where I get them back. This is a big day. To many patients, it signifies a new life. People even give themselves a new birthday. 

Day 5-7: The chemo only now starts to "settle". If I hadn't already come down with all those side effects listed earlier, I'll get them around this day. If I already have them, they'll get worse. 

Day 14+: Get busy living. 

Once again, I could have this wrong but that's what I know so far. I'll be trying to figure this out in the coming week. 

Tuesday, May 26, 2009

2009. A very fine vintage.

You remember the Keanu Reeves era? Now, you ladies will be loathe to admit it but many of you thought he was it. Until you realized he wasn't very smart. Okay, he was dumb. In the middle of his time in the Hollywood sun he did this chick movie where he loved this Mexican-American girl who's family owned a vineyard. The really chick moment came when he (or she. Frankly, I can't remember.) got to step into the vat of grapes and crushed them good. I'll bet my wife watched that movie and pretended she was the grapes and he was stepping on her. Or something like that. Anywho, Keanu was really happy at that moment of the movie. It was the crescendo of chickness where this beautiful, sort of effeminate man finally understood his woman and all her struggles of womaness without saying a word, all amongst a wooden crate of seedless fruit. 

Well I had a similar moment last Saturday. While I am not nearly as good looking as K, I am as dumb. My harvest was the stem cells. I had just spent two days sitting in front of a metal box that sucked my blood out, swished it around like wine and then plucked out the stem cells before sending it back into my body. I was supposed to get an average of 1 million cells a day and do it for five days, making 5 million. 

But my harvest was bountiful. I got 3.75 million the first day and 3.38 million the second. I passed up the required 5 million with three days to spare. The glorious euphoria of finally being able to do something right made me feel as light and airy as Keanu. Besides thinking that I am healthier than I thought, it also meant that I no longer had to take two shots a day that made all my bones and muscles ache. And it meant that I had a free weekend.

Even though my dad was there, he was the one who said I should go home to see my kids. So I did. He left, too. He liked the Rotary House but not so much that he wanted to stay there over the weekend with nobody to talk to.

So I surprised my family. And then McKenna surprised me. She cried. She wasn't supposed to do that. Conner, yeah. He's old enough to know what cancer is. He knows that nobody in their right mind would willingly spend months in Houston, Texas unless it was a matter of life and death. So he knows this is a struggle. But I didn't think Kenna was aware of this. Little girls aren't supposed to cry about cancer. They're supposed to cry about not getting cell phones. 

Still, I had a great weekend. We didn't do much. But I sucked in every boring moment the way the metal machine sucked in my blood. 

Now it's Monday. I'm back at the Rotary House. They're showing Mall Cops in the lobby. I have to replace my line in my chest with another, smaller line tomorrow. Deeper into my mid-section, my chest pains continue. My neck sill hurts and muscles are moving. I keep thinking back to the weekend and hoping to feel like Keanu Reeves in his grapes. Someday I will.

Wednesday, May 20, 2009

He didn't think it was funny

Chest pains are back. God is good. God is great. God is not amused.

Tuesday, May 19, 2009

A breath of fresh air. Boy you don't know how fresh.

As you know just from a few blogs ago, I was having a hard time of it. Then I woke up this morning.

To me, my chest pains have always been a sign that the cancer is still hanging around. Medically they say it could be a couple of things related or not related to yucky-bad masses. I believe the one explanation that says the pains are because the cancer butts right up against a major artery, thus restricting blood flow. I've had consistent pain every single day of my life since November 2007. Some of you bloggers even remember 2007? That would be roughly more than 500 straight days of chest pain. Not for a second today and the day is officially over. 

It's unbelievable. So this is what it's like to feel like the rest of you? You guys got it easy. I like it. I'd tell you that this breathing thing is even better than sex but my parents read this blog and as you all know, I've only had sex three times in my life, thus procreating Conner, McKenna and MadTown. 

I had a feeling I was getting better because my night sweats had all but disappeared, too. Night sweats is a symptom of a type of The Hodge called B symptoms. The B stands for Bad, very Bad. I've never truly experienced pure B symptoms like others but I have tracked my night sweats. When I first got here, they were pretty sopping wet, but perhaps that's because I was scared since I was sleeping at a Holiday Inn. Through time and chemo treatments, they've subsided. The last week, they disappeared altogether. I arise now dry. It's very strange.

Finally, I woke up noticing one other thing, Carlo is all but on the lam. He's way, way down. All that's left is a small bump that probably only I can feel.  

I know that many of you have been praying for me, all to your Gods. I figured that if I got enough variety of praying people, then I'd hit on the right God. You see, it wasn't a matter of volume to me. It was a matter of finding the right one. I didn't want you to keep praying as much as I wanted you to find people of different faiths and tell them to pray. Ya know, I'm hedging my life. 

After all, the pitch itself would be pretty easy. All you have to do is ask God once or maybe twice (just in case he was pre-occupied the first time). I think the story merits some mercy, especially if you included a well-rounded power point presentation in your head when you were asking. I'll bet Cari Dinneen's was spectacular. She's one darn good presenter.

If, for some reason, the chest pains come back tomorrow, I'll know not to joke around about God. But I don't believe that will happen. He's as mean as the Old Testament paints Him out to be. The thing is, you get a reputation and word spreads and things get exaggerated. I understand. So I think he'd listen to the pleas of a Brandy Isaac or a Kristen Rubino, as long as they didn't take up too much time and they didn't get real nervous and start mumbling. 

Now I can't jump up and down about this sudden turn for the healthier. No, really. I can't. The rest of my body is killing me. For almost a week, I've been getting two shots a day to rally those Stem Cells. The side effect is that eventually, your body feels like you just finished playing running back for the Detroit Lions. Guys, if you like, please tell the ladies that the Lions are horrible and if you're playing running back for the Lions, then you're being whipped around pretty badly. It got worse and will continue to get worse until the Great Harvest begins. Of course, it could be God just redirecting his punishment. I should stop talking about God now. Any way, it was a great day today and I'd like to thank you all for the encouragement. I'm sure this will be a roller coaster the rest of the way but there is definite progress. 

Monday, May 18, 2009

Old Time Hockey. Yeah, like Eddie Shore.


The Blackhawks are one of the coolest stories in Chicago sports this year. They are a young team with dizzying speed, great enthusiasm and genuine humility. Even though it looks as though they might soon be hitting the end of a good run, you can see the tea leaves. They're going to win it soon. Part of the credit goes to a guy named Stan Bowman. 

Stan isn't a player but he is as close to coming from a hockey-royalty family as there is, outside of having a last name of Orr or Howe. He was even named after the ultimate hockey prize, the Stanley Cup. That's serious hockey. Stan is the son of one of the sport's all-time great coaches Scott Bowman. True Hawks fans have seen Scott Bowman in their nightmares for years as he was the head coach of many punishing Detroit Red Wing teams. Stan, the son, has been working for the Hawks as an assistant to the GM for a number of years. 

Stan is a fellow Hodge Dodger. He was first diagnosed with the disease while with the Hawks when he was 33. A couple of years later, it came back. Not knowing what to do or where to go next, Stan one day received a call from Wayne Gretzky of all people. The Great One had a friend at the Mayo Clinic who might be able to help with something called a Stem Cell Transplant. But it would be tough. He would need to depend on a lot of people just to get through it.

And as you can imagine, Stan's dad visited often as Stan was fighting his way through it. Once Stan came out the other side, he asked his dad to stay permanently. He offered Scott a job as a consultant to the team. Now hockey guys aren't exactly an emotional, sappy sort. But I'll bet that at one point Stan thought that he wanted to know everything his dad knew. He wanted to be around his dad more. He wanted to know him because one day he won't be able to call his dad up. 

It was too bad it took a tragedy to get to this. But as a producer once told me, "Problems are just opportunities." By the way, that in itself was a problem because the whole rest of the shoot we had to say, "Ah, we have an opportunity." We had a lot of opportunities. 

It is with this story that I get ready for a visit from my own dad on Thursday. He's staying for the weekend. Recently I wrote about a bottom. But looking back on it now, there was a deeper bottom that only my dad and I know about. It was during my third chemo treatment. So far, the other treatments weren't working at all and this new stuff didn't seem to either. One night I was having pains that would start in my chest and shoot down to my belly. It literally felt like the cancer was migrating down to a new set of lymph nodes, the set that you don't want to go to since it gets you in real deep. Not wanting to wake my wife up, I thought I'd email my dad. It was midnight. He called within five seconds. I then let loose. Everything crashed. It's very, very frustrating when your mind is willing to do whatever it takes but your body isn't. Your body just can't. 

This weekend, I'm going to try to forget about what's trying to corral me inside and enjoy my time with my dad. He doesn't know much about hockey but he knows about a lot of other things like building a fence, picking stocks and how to be a genuine person. I'm still not feeling the greatest and my mind is occupied with "watching and waiting". But my dad is coming. 

Enclosed is a picture of one of the greatest movies ever made, Slap Shot. Featured are the Hansen Brothers who were known to play the game the old fashioned way, like Eddie Shore.