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. 

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. 

About Kate

Kate Levin had the office next to mine at C-K. Every day at about the same time I would hear her call her kids. She'd be so loud and happy listening to how their day went. Afterwards on occasion, she would come into my office and we'd talk about our kids, almost never work. C-K was a very political place but Kate stayed away from the drama. She got her work done with a passion and the only other thing she wanted to talk about were kids. You could tell that she was conflicted with what I would imagine many women feel: that is, a need for work and a bigger love for her kids.

Kate was a creative director and so she was sort of my boss. She was also a great writer. She came from New York. You know those really entertaining IBM commercials? Kate did many of them including one of the most famous about Christmas morning. Sometimes she annoyed me because she had this new way of writing headlines that was shorter and with more edge. But she was right. I needed to write shorter and with more edge. 

I became an admirer of hers forever one day when we had layoffs. A friend of mine got the axe. Kate was hard on him in the past so I just assumed that she had a hand in firing him. But she didn't. When she found out, she was really, really crushed and actually tried to stop it after the fact. Kate believed she could get the best out of everyone. Instead of not being fond of this writer, she actually liked him because he worked hard. I realized then that no matter how tough Kate was and how much she stayed away from the drama at work, she really cared about her people. 

And boy was she tough. Advertising is a real man's world. Still is today no matter what you may hear from agency heads. So to get anywhere near Kate's position, she needed thick skin and a steel back because a lot of people would be trying desperately to stab at it. 

Kate died today at just before three pm. She fought cancer for a long, long time. I can't even count how many years, it was that long. And she had it bad. I think I've learned a few things about cancer but I can't even pronounce what she had. I can't even describe it. All I know is it was bad and in a lot of places including her brain for a while. I mean, she came back from having cancer in her brain. How is that for tough?

When I was really in a dark place with my second relapse, I called her. She was going to be the one to understand. And because of where she came, way out of the darkness many times, she was going to be the one to lend me that help up. Like myself, she didn't talk to people much so I talked to her husband Rob and heard her many comments in the background. They both offered to do lunch sometime and repeated that offer the last time I emailed them both. I felt better after talking to them. I wish I feel that way right now. 

Kate leaves behind many memories and two beautiful girls. One plays hockey. Tough like her mother. I hope today, sitting here as McKenna gets ready for bed, Maddie sleeps, my wife watching TV and Conner taking a shower that they know how hard cancer people try to stay alive. I hope someway, somehow, it's Christmas morning to Kate. She deserves nothing less. This disease sucks. 

 

Passing it on.

Once again, I'd like to thank everyone for their support the last couple of weeks. My shingles is still around but definitely manageable. I'm up and about doing a lot of mulching.

It's true from what Todd had said. I had the pleasure of seeing our two kids play baseball together. It's actually very strange to come so far. I met Todd in college our freshman years. Who would think that we'd be so old and normal and watching our own kids play ball against each other. Todd's boy got a hit off Conner. Even though he did, it was an enjoyable and fascinating moment. Conner didn't know until after the game. I didn't want to make him too nervous. 

I go in for more tests in a couple of weeks. From what I can feel, the nodes on my left neck are fusing together. They're small individually but together they form a pretty big lump. A "bulky mass" is starting. I'm not sure what the doc will do. You can see them sticking out of my neck now. I try to wear shirts that cover it up. I don't want the kids staring at it. 

My hair keeps falling out. I'm sick of hats but I really have no choice since the hair is coming out unevenly. I refuse to shave it all off. This is the last I'll probably ever see of my hair so I'd like to keep it around for as long as possible. Even if it is covered by a hat.

I'm really enjoying the days here and hating the nights. I wake up late morning, see Maddie, take about an hour to get used to the world and the weirdness of my body and then get on with it. Usually, Sherri and I do something around the house. Lots of mulch is involved. At night, I have to take the pills and I don't feel too good. Toward the end of the night and into the morning, such as now, it's pretty ugly in my head. 

Tonight I made the mistake of feeling the nodes on my left side. If I don't feel around, I'm okay because I pretend to just have a disease. When I feel around the disease becomes more menacing. I rarely feel around but tonight I did. It's actually a little difficult not feeling it. When I take a shower I just don't wash that part. If there's an itch, I pull on my shirt. I don't even shave in that direction. 

I haven't posted here because quite frankly, nothing new has gone on. But I did really enjoy seeing Todd and wanted to write about it. Sometimes you can spot milestones in your life even while they happen. Most of the time, you probably don't appreciate it for what it is. But then I really did. I have three kids and all are great. They have their own personalities and are good people. A couple of weeks ago, I got to see a friend of mine with his own kid and I can see how we all pass it on. Todd is a really ice person who will do so much for a friend. His son recognized me even though he hadn't seen me in eight years or so. Amazing. 

When I was younger, probably as a freshman in college, I thought life was about so much more. I wanted to change so much. But now I'm okay with changing my world and making my world better. No one person changes the world. Nobody changes a lot. But a lot of people change a little. And then they pass it on. 

Phew. That was close.

If I haven't gotten back to you over the last week or so, I am very sorry. I went on lock down again. Lock down for me has nothing to do with prisons. It's when I get really sick. This time, my shingles came back and I got a cold at the same time. I'm still not exceptionally well but am working on it. At least I think it's a cold. When talking to Dr. O'Connor today, he suddenly became quiet and serious. He told me it's either a respiratory infection or my nodes around my lungs. If it's the nodes around my lungs, well, Sherri might want to start looking for another life mate as I'll be cooked for sure. But I doubt it. I'm coughing up plenty of phlegm and it's not the usual blood brown that accompanies bad cancer phlegm. I think the good doctor is just being cautious. So any way, even being a cold, I was pretty sick. The shingles really knocks me good. I'll get better in the next couple of days. That means Shamus, Pat, Rossi and Kevin Kucharski should be expecting some bothersome contact from me. Also, to Todd's step daughter, thanks for the note. It seems as if Todd hasn't changed much. Which is a good thing. 

Life as an eighty year old

Anne Sexton once wrote, "In a dream, you are never eighty." Or maybe it was Sean Hannity. Anyway, it's great insight. I would also like to apply it to what people think of me. You may remember me as being a really annoying, self-centered forty-something with graying hair. Healthy but still really annoying. In a way that's wonderful. I would love to be thought of like that. 

But that person is gone. Now, I am just me. Some of it is hard to look at. My hair is almost all gone now. What's left is white and ragged. My face looks worn. You can see what I've been through by looking at my expression. It's hard to smile even when I am happy. And I am still happy. Also, I'm very skinny. I struggle to keep up a weight of about 160 pounds. When I started this fight I was about 185-190, depending on whether I had a donut before weigh-in. 

Sherri thinks that some of our relationships with friends and neighbors have suffered. We both think that it's hard for people to handle. What do you say to me? So, how is cancer? We think some people just generally stay clear. 

Of those many kind-hearted people who have asked to come over or to just meet up, I really appreciate it. But keep in mind it's hard for me to say yes. You remember me as an annoying forty-year old. When you see me now, you will only see me. And, on my end, I can track the adjustment you make in your head when you look at me. Your mind goes from, "Wow he's changed." to "Man, he looks bad." to "Hide the fact that I said he looks bad. I think I'm going to hell for thinking that." Once again, it's okay. Even if you don't make that adjustment, I think you have or you will sometime later on. When you're driving away, you'll say, "Geez, he looks like crap." 

Kids aren't so sophisticated. Mostly I see it in Conner's friends, probably because boys, like men, are even less sophisticated than women-folks. An encounter usually goes like this:

Kid and Conner come up to me. Kid is looking down.

Kid says hi to me.

Kid has weird look on his face as he looks at me.

Kid looks scared. He sees a monster or at least something he's never dealt with before.

Conner sees none of this. 

Conner makes a joke or comment.

Kid gets away in a hurry.

I think to myself, "God bless Conner." Either he's accepted the fact that his dad isn't like other dads--strong, somewhat handsome, not so ashen. Or he doesn't see it. Either way, it is to be admired. Some people say I'm strong. Try being a pre-teen and you have to introduce your friends to your dad, the sunken-eyed, ashen-faced circus freak. 

I blame nobody for avoiding me or making a face or anything. It's only cancer's fault. In fact, I'll even give you some tips on how to act with me. I might be different from other people with cancer so only apply this to me.

First, ask me anything. What does it feel like? Can I touch it? Is your poop still backed up? Anything. Since I'm dealing with it 24/7, I have a lot in me and would love to pour some out. Just like my poop.

Second, it's okay if you say I look like shit. I do. You're just being honest. Although some of you would disagree, I never really cared what I looked like as long as I didn't look too much like a dork. Average was fine with me. Got me through college. So I don't feel bad for looking so bad. What I feel bad about centers around my kids and wife. I don't want them to think they live with a Thing. I don't want Conner to hate me for being sick. Many of us admire our dads. It's hard to admire a guy who lays around in a blanket all day.

Third, understand my body changes on a minute to minute basis. I might feel well and then a node tells me he's still there, alive and well. So I have these tics now. Also, I may get tired and cancel out on something at the last minute. It's weird. I hit these walls. One second I'm fine and then wham, I just want to lay and stare.

Fourth, take it easy on my wife and kids. They live with me. It's my wife's birthday today. Every day I wish I could give her a normal husband. But today I had to settle for candy, a gift card and a phone charger. Romantic, right? She is so very strong. She's still singing every day. I feel it now inside of me. 

Finally, don't worry about keeping my spirits up. If you're reading this, you have become for some unknown reason, a friend. I don't know why you befriended me. But you did. Every day I wish for the days when we were both healthy and talked about nothing. Feel free to talk about nothing with me. Don't worry about how I feel. Sometimes I feel like shit. I won't tell you that because I don't see the point in bumming us both out. I want you to feel good. That way one of us can feel good. 

Coming Up For Air

One of my favorite books from one of my favorite authors is, "Down and Out from Paris to London." It's by George Orwell. He literally gave all his money away to live as a bum in Paris and London to really see what it was like. He had to give his money away because he wanted the experience to be genuine. 

The title of this blog isn't from that book. It's from another book Orwell wrote that was really boring. It was so boring I can't even remember what it was about. Still, he was a terrific writer.

I spent the last two months trying to stay alive. I wasn't very well. I didn't know it then. When you're really sick, you don't know it. Only later can you look back and say, "Whew. That was close." The shingles really had me. Plus the treatment exhausted me.

Yesterday I saw my doc in New York to start another round of treatments. He was shocked when I told him what was going on with me. I said I'd wake up around noon and just tried to get one thing done in a day. He nodded and went on to tell me about men. Most men are babies. They can't take pain like women. But some men aren't. To their detriment. Some men will suffer through pain because they are ashamed and/or want to beat the pain. But they shouldn't do that. Doc told me that there are other treatments out there and if I am still having a hard time doing anything during the day then we can switch treatments. I told him that I was just happy to be alive even if I was running at about one third speed. He said that there is a quality of life issue and patients need to decide individually if living at one third speed is better than trying to live life better. He didn't think I should be like this at this point.

The thought was to give my current treatment three more weeks. If I'm still tired and nauseous then we would switch treatments. We might switch anyway. The lumps in my right collar bone have fused together forming one big mass. So the cancer is growing. However, the big issue is how fast it's growing. If it's a lot then I'm off to another drug.

I'm still in a lot of pain and am nauseous and tired but now I have a whole list of even more drugs to counter act these feelings. It's too early to tell if they're working. You'll know by my radio silence if they aren't. In one day I can very easily down close to thirty pills. Let's take an inventory, shall we:

Colace so I can poop

Valtrex so I can get rid of Shingles

Hydrocodone for pain (two times a day)

Aleve for sore nodes (two times a day)

Ritalin for energy (two times a day)

Kytril for nausea (two times a day)

Ativan for nausea

2 pills of Benedryl for the Hodge Itch

12 pills for treatment

4 pills to fight cancer

An anti-acid to help with digestion