Friday, July 30, 2010

The quote is from Bono. The rest is from me. Bono writes better.

"And you give yourself away.
And you give yourself away.
And you give.
And you give.
And you give yourself away.
My hands are tied.
The body bruise she got me with.
Nothing win and nothing left to lose.
With or without you.
Without or without. I can't live with or without you."

I think I'm going to become a drug addict. For a variety of reasons, the doc upgraded my supply from Hydrocodone to Oxycontin. Much more powerful and fun to boot. Plus, he gave me lots and lots. 

The cancer is spreading through my collarbone area and inside my chest. I'd say it's 1/3 of the real estate now. So there's the pain of moving muscles and banging against bones. That's very uncomfortable and it's a bad pain. Cancer has it's style of pain. It's very ugly. The pain after you work out, well, that's a nice pain. While it hurts, it feels very right. Cancer feels very surreal, unatural and alien. Like a car crash.

I'm a side sleeper. Well, I used to be. Can't really do it well anymore because the nodes choke off my air supply. Are you a side sleeper? I remember in high school or college, someone did a report of the psycology of how you sleep. I guess the best is to be a tummy sleeper as you have the attitude of taking on the world. The worse, according to this and my memory, is to be one of those curled up and rolled into a ball sleeper as you may be very insecure and just want to go back into the womb. All you back sleepers don't get a break, either. I'm not sure why. I only paid attention in class about 60% of the time. 

I'm also getting over another bout of shingles. This left even more fine-looking marks on my belly and back. A few times doctors have asked me to take off my shirt and sometime after, they make some kind of comment like, "Oh, well, um...I see, ah, you've had some work done." It's a moment of power for me. I hope you understand and forgive the temporary arrogance but how often do you make a doctor stutter? Usually they know everything. Or at least they want to make you think they know everything. This when I got 'em.

Also, the Hodge itch is back. This is only relegated to Hodge patients. Doctors have some kind of medical reason but basically it comes when the patient has reached a point of "widespread disease". Soon, I'll be getting night sweats and weight loss and the disease will pick up pace. But the Hodge itch is nasty-bad all on its own. It's like getting the worst mosquito bite and it's all over your body. You just itch and itch. And you start to sweat because you itch so much. It's crazy. Quite frankly, I think it's one of the worst parts of having cancer. They give me some anti itching drugs but it only sort of helps.

And I think they know that. At this point, I achieve permanent name your own drug, we'll get it status. The biggest benefit to oxycontine is my body feels warmer, so I'm in a better mood. So instead of fighting the pain and itch, I feel like I'm in a hot tub only without the hot ladies. Not that I would do anything with the hot ladies. We have four girls in the Herlehy household so my perspective on the softer sex has certainly changed through time. It's taken all the fun out of thinking about me in a hot tub of hot ladies. In my twenties I would have had many naughty thoughts that may or may not have included midgets. Now I think it would be really, really exciting to talk about, well, anything because we just love to talk.

Now the doc doesn't just give me a few oxycontine and a warning to be careful. I get a big old load of them and no warning at all. A drug dealer couldn't be more welcoming. I've even said a few things about not wanting to get addicted and they don't even look up from their pad. Not even a word. What has this country come to? 

In fact, this is clearly one of the benefits to having cancer.  Any drug, you name it, I can get it no questions asked. The moment I start complaining about anything, the doc (or most likely an assistant) takes out the pad and starts writing scripts--that's scripts, plural. This goes for every single doctor I've ever had. At first I refused many drugs. The first few times I had my first chemos, I never took anti-nausea drugs until I was ready to puke. Now, no way. If I'm on this trip, I'm going to enjoy the view. Yes, some of you may be a little disappointed in this. But hey, I can't drink any more. 

So yes, I have a difficult few weeks coming up. My disease is progressing to the really dangerous stage, at a faster pace and I'm taking nothing to stop it. But I can feel good about it if I feel like popping a few yummy oxies. 

One last note. Sorry to many of you who have wanted to get together in the last two weeks. The shingles did a number on me again. Then the itching started up while in the throws of shingles. So I had a hard time doing anything. I'm sorry. I mean no disrespect and get bummed thinking about a lost lunch or two. My hands are tied. The body bruise she got me with.

Thanks for offering anyway. Have fun with your summers. If you get a chance and feel up to it, please feel free to drop a line. I really enjoy hearing from all of you. that's another benefit of cancer. It makes you connect and reconnect with friends. Even the ones who can't speak much English. It almost makes it all worth it. Almost.

Saturday, July 24, 2010

Going deep

I'm not working at Tom, Dick and Harry very much at all these days. So the absence has given me a little perspective on my experience there. 

I remember the best piece of advice I had ever gotten came from a man from India. My friend Sonya Grewal (who, coincidentally, is recovering from her own war with cancer recently) was getting married to this great guy, Mark. So her parents were in town for the wedding and reception. They lived in India and are Indian. Her dad also owned a very successful company. When I met him, it was literally the first week TDH was in business. Before that time and for many months afterwards, the three of us founders would ask anyone who had experience starting up a company for advice. People responded with very good, insightful words of wisdom. But not Sonya's dad. He just said, "Work hard and everything will be fine." Then he went on with another conversation as if to act like it was a no-brainer. 

To this day, it was the best advice I had ever gotten about owning a business. When we started, we had everything going against us. First, we were three boneheads who knew very, very little about anything other than football trivia. Still David's not the best at football trivia, but I digress. We were also starting a business in what was then one of the worst recessions in decades. And finally we were in a business that had other like-companies, tens of thousands of companies that were selling and saying the exact same things we were. But we worked unbelievably hard and somehow, it came out alright. Today, that's the advice I would give to anyone thinking of starting their own business. Work hard and everything will be fine. But you gotta work damn hard.

The second best thing I learned out of TDH is not to be afraid to go deep. This is yet another sports reference. In football, throwing deep holds high risks and high rewards. You either get sacked or score a touchdown. The key is to assess the situation. See if the timing is right, the conditions are favorable and make sure you have a back-up plan if things don't go well. We went deep at TDH because we were leaving a pretty safe gig and trading it in for something that was anything but. At least that's what I thought. It actually turned out to be just the opposite. Owning your own company is actually safer than working for a company. After all, you know when the money runs out when you own the company. When you're an employee, you can get popped at any time and for any reason.

One of my biggest heroes in life is Abraham Lincoln. I've read a handful of books about him. The best by far is Doris Kearns Goodwin's. It's an unbelievable read. Not as good as McCollum's book on John Adams but we all can't be perfect. I was once awed by Lincoln's clear, concise and still creative writing style. I was blown away at his ability to overcome hatred and forgive. And of course, there was his brilliant mind. But after reading the Kearns book, I was most impressed with his timing. People today think Lincoln was a radical but actually he was very, very centrist. And that means everybody hated him no matter what he did. This reminds me of a certain president now but I'm not going to get too political here, not since both my father, father in-law, partners and close family friends are all pretty close to being tea-party marchers. 

But the way Lincoln handled everyone was he waited for the right time to make his move. He waited years to free the slaves. He waited months to fire incompetent generals. He even waited until the right time to be nominated president. Time after time, he waited for the right time to promote his agenda and it was the timing and not necessarily anything he said that got it done. He had a genius understanding of the importance of timing.

It is with this inspiration that I tell you all of my next move. The fine Dr. O'Connor has indeed taken me off my current treatment as it isn't working at all now. We talked for more than an hour about what to do next. Currently, there are about twelve different drug treatment options available to me. All but two of them have about the same chance of any success, which is about 30%. Just so you know, the drug I was on had a slightly higher rate and even though the cancer grew while I was taking it, I am considered a success since it grew under the scientifically accepted rate. It was only supposed to last five months, I went almost double that time.

With basically a 30% chance of doing anything remotely positive, I wasn't exactly thrilled with my choices. Neither was Dr. O. So after much discussion, we realized I was left with two drug treatments that could have better success rates than the 30% drugs but both were high risk and high rewards. 

The first is a treatment only available to me in Europe. I would have to live in Pisa for about a month to get to my first infusion and then come back periodically for other infusions, maybe a couple more months. That seemed like a big pain to me right now. Heck, I never even told my wife about this as I could just see the conversation, "Yeah, it's in Pisa, Italy. You know, the place with the leaning tower. I'd have to find a plane ticket, a reasonable place to live and oh, I'd have to leave you here with three kids during the busiest time of your life for a month." She'd do it but I don't know if it was right. 

Like Lincoln, I have to pay particular attention to timing. It didn't seem like the right time now. But it could be the right time in a couple of months. But the key is I can't wait too long. If I get too sick, I won't be able to make the flight or be able to take care of myself for long.

Also, this choice is high risk on a medical basis. For some reason, the only time they tried a similar treatment here in the US, it failed miserably. It's done well in Italy but it hasn't been tried on a lot of patients and hasn't been for a very long time. This is a new type of therapy that involves sending radiation into your body instead of chemo. It's very new. Promising but new. I'd have to go a long way for a promise.

The other high risk/high reward option is even more high risk. I would literally be the first human being to ever try it as a Hodgkin's patient. The drug did really well in the laboratory with other cancers. It works like my last drug, SAHA, in that it kills the cells that help the cancer cells live. Only this cell is a little "further downstream." This treatment is thought to be a good Hodge drug because the cell it kills is very popular with Hodgers. They got more of them than other cancer patients. So far it's doing well with other cancer patients. Dr. O. said he's only seen one other drug to seemingly have better promise and that is the ever elusive and much ballyhood SGN-35. As I mentioned in other posts, I can't get that until the first quarter of the new year at the earliest. But even that one has many, bad, bad side effects.

The thinking here is if this drug does work, chances are it will work better than what I just finished getting, which is really only slowing growth and not really killing growth. If it doesn't work, we should know faster than other drugs since in labs, it has shown to work very quickly. If this happens I may have a better chance at survival because I can hopefully catch it quicker. Because I'll be on it for at least a couple of months, I'll also have a better chance to switch to a couple other drugs that are out there because I will be further removed from similar treatments in the past. For example, I could switch to a more traditional but painful chemo and have a better chance at survival because I will have had almost a year and one half break from chemo. 

And there's always the Europe plan. That would actually be my first choice if I'm still feeling up to it. Give this new drug a short shot and then study up on some Italian.

So that's the deal, complete with a mixed metaphor of Abraham Lincoln and football. As always, I would love to hear your thoughts. I especially enjoy my Asian brethren even when it is translated by Reed Martin. 

One other thing, expect to see a lot more of these posts in the next month. The doc gave me a steroid to help stem the swelling on the cancer while I'm in between trials. The steroid keeps me up at night. 

The good news is, the warewolves don't howl any more. I'm not afraid. I've been through hell. I've seen it. It's no big deal. Sort of like going to the House on the Rock in Wisconsin. It's there. It hurts for a while. Then you're done. 

Thursday, July 8, 2010

The Bizzarro World of Cancer

Good is bad in cancer. When you feel good, sometimes it's a bad sign. When you feel bad, on the other hand, sometimes that's good because the treatment you're on is killing cells in your body.

Lately I've been feeling good, which is bad. I saw Dr. O in New York and he said that my scans were bad, which is bad. Even though I've been feeling stronger, less sick and have more energy, my cancer is too. The treatment that I'm currently on isn't working but since there's not a lot for me out there, we decided to give it one more shot.

So the coming months look like this: 

I'll continue on this treatment until mid August. The roughly twelve tumors that I have in my body will have grown during that time. Right now, the largest is three centimeters. Growing at the same rate, it should be five to six centimeters in August. This tumor is right below my right lung. The danger is that it infiltrates the lung. It could do it any time without any rhyme or reason. Cancer does what it pleases. Other tumors will have grown too but they should range from about two to four centimeters. Many of these are located on my neck and shoulder. I'll start looking a little like Elephant Man.

In mid August, I will need to have a "wash out" period of one month where I can't take any chemotherapy drugs and have to wait for my body to completely wash out the current chemo. The cancer will be able to grow unchecked here. About the only thing I can do is take prednizone, a drug that has messed my brain up pretty good in the past. Expect a lot of late night blogging and emails to occur as it keeps people from sleep. This drug is only a short term remedy and keeps the cancer from getting too wacky.

By mid September, if I'm feeling up to it and if the cancer hasn't advanced too far, I will go on another clinical trial treatment. If I'm lucky, I'll take to this and the tumors will stop growing or even reduce. But the chances of that happening are less than fifty fifty. If the treatment doesn't work, we'll know by about November and I'll probably end up taking some high dose traditional chemotherapy to try to bang back the tumors for a short period. 

The goal right now is to stay alive long enough to reach the new year. At that time, an effective treatment may become available on the market as it is scheduled to be approved by the FDA in the first quarter. That drug has many debilitating side effects but has shown to be 70% effective for Hodge patients like myself. It only lasts about five months before side effects become too unbearable and dangerous or the drug stops working. But that would take me past my birthday and into a new baseball season.