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. 

Friday, May 15, 2009

W & W, PA, A-B

Chemo is painful. Cancer is deadly. Watching and waiting is torture. Or should I say, "watching and waiting is enhanced interrogation techniques?" But that's the best thing to do right now. If the node gets bigger, than I'll definitely alert the right people. If it gets smaller, you may hear a huge "Huzzah!" from Houston, Texas, home to one of the few places in the world that still does a "Huzzah!" instead of a "Hoorah!" It makes for one really long weekend but I feel like everyone at MDA is aware of the situation and the best thing to do is to keep an eye on it. From my limited knowledge, cancerous nodes usually have to be a minimum of 2 cm for docs to even consider it cancerous. Since we never switched over to the metric system, I'm not exactly sure how big 2 cm's are but I think it's just under that size right now. Hence, the decision to watch and wait. Painful as it is. Once again, people with imaginations shouldn't get cancer. They should get other things like gunshot wounds. Quicker. More decisive. Less room for interpretation.

I was also informed by one of the numerous stem cell transplant Physician's Assistants (PA) that there are other options such as more chemo or radiation before saying that all is lost. Now, that may sound like good news on the surface but you should know that PAs are often wrong. As far as I can tell, most hospitals are employing PAs and for good reason. They can relieve a busy doc's workload. I like them since they're much easier to talk to than docs. But around here they have a tendency to want to be the smartest kid in the class. Probably because they were the smartest kid in the class. Maybe in my younger years I would have had complete awe and admiration because they're so smart. But not anymore. Something happened to me after I met Leonard Lavin. 

Leonard Lavin is the founder of Alberto-Culver. He's eighty or ninety and most likely a billionaire. For some ungodly reason, he wanted TDH to do an ad for his original Grecian Formula, the stuff that guys used in the fifties to slick their hair back. Alberto-Culver had an agency of their own but Leonard wanted to show all his marketing people how you do great work. So we worked with him and needless to say, his project fell flat with a huge dud. As I walked away from A-B for the very last time, I thought this dude, this bazillionaire, was sort of pathetic.  He would go to work every day and sit in this dark office without windows and call meetings about stuff. In these meetings, nobody would listen to him and often treat as a child. He was mean and egotistical and he was destined to get even more so because nobody really cared. 

Now I'm not saying that any PAs are as demented as Leonard Lavin. But I am saying I have a higher bar for my awe and reverence in my more experienced years. If Leonard Lavin doesn't impress me, some cyborg with straight A's isn't going to right away. I thank you for the information and appreciate the encouragement. Now, when do I see the doc?

By the way, the answer to that question is almost always, "Soon." In the meantime, I watch and wait. 

Wednesday, May 13, 2009

I found another enlarged node

We'll see the doctor tomorrow. But I'm pretty sure it's more cancer. This time, it's in my neck. Now things are really in a precarious position. A node that grows during chemo is a sign that chemo is not beating the cancer. I may not be able to move on to getting a stem cell transplant because, quite simply, it just wouldn't work. Docs wouldn't even consider it. And even if they did, my chances would be very remote to even survive the ordeal. I almost have to decide whether it's worth doing or am I better off trying something else. I don't know what these options are right now. We'll talk to the doctor. Sherri leaves for Chicago and the kids on Friday. Good thing. I feel bad that I'm a complete mess around her. My mind is willing. My body has other designs. 

Monday, May 11, 2009


I'm at bottom. Or at least the bottom that comes before the stem cell transplant. I get out of the hospital tomorrow and that may help. I can get some sleep. In addition to my abdomen pain, headaches, nausea, fatigue and the chest pains that remind me with almost every breath that the lymphoma is still there, I now can add toothache. 

Believe it or not, it's not uncommon to have teeth problems with this type of procedure. Of course, I'm not actually at this type of procedure yet. I have ten days to get to that point. So if the tooth continues to bring pain, I believe it gets taken out. This is another side effect to the side effects and all of them endanger success, which causes me to stress, which causes more side effects and the vicious cycle keeps going. 

Tomorrow I go home from the hospital. And not alone, either. I will have an IV backpack and a bundle of shots to keep me company. Somehow I have to give myself a shot once a day. I was facing a pretty depressing scene the next week until I broke down and asked Sherri to fly back down here. She just flew back up to Chicago for Mother's Day and now I'm asking her to come back down to Houston. Tough to ask a pregnant women with two of my own kids at home to come do this but I need help. 

Still, even with her, it's an ugly scene. I will be in a hotel attached to an IV in a back-pack, without very good cable, in Houston, feeling miserable, having a hard time even walking around and trying to make myself worse by giving myself a shot in the gut. With a toothache. It was supposed to be ten days of waiting for my blood counts to reach bottom. I didn't know I was headed there too. 

Above is a depiction of how I feel. Cancer eats away at the body. The treatment eats away at the human being in all of us. 

Sunday, May 10, 2009

This is a really boring post

I get a sneak preview of what's in for me in about a month. I'm in the hospital at MDA through Tuesday. But instead of putting me in a pre-transplant area, they put me in the post-transplant area because they have to pay more attention to me. With my one kidney, they have to really hydrate me or the chemo will mess with it. 

I'm on a chemo drip. Get one chemo for twelve hours then switch to another and it keeps repeating until Tuesday. As you can probably tell, my brain is scrambled a bit. The pain in my gut has not been a big problem. In the morning when there's no food in it, it gets nauseous. And I get typical random pains but that's about it. So far I feel sick, tired and have the usual chemo-induced pains. But no puking. 

The point of giving me chemo now is to drill my system down so stem cells could start harvesting. But the docs did tell me that it will, hopefully, also kill some more of the remaining cancer cells. I'm supposed to be in the hospital for five days and then wait for two weeks. During that time, I'll have to give myself a shot to help get those stem cells a-harvestin'. 

The staff make you take walks around the unit with your IV pole every couple of hours. They said you should name the IV pole. I named it Nala after my dog because my wife doesn't like the dog. She doesn't even like people being nice to the dog. She doesn't like talking about the dog. So I thought, "What better way to get under my wife's skin?" Every two hours I can say that I have to take Nala for a walk again. The other Nala is back at home. She chewed off the starter nob on our grill. Twice. Growled something about not wanting us to grill so much and instead eat healthier foods.

Along with walking, I go to the bathroom. Alot. As in every two hours. And it's a bit of a big deal because I have to take Nala with me. Also, I rinse with salt water every two hours and blow into a tube to get my lungs active. That's my day. Can't think of anything fun and creative because it takes work to get your brain moving. While I was in college, some friends of mine bought a car for $25. Really. As you can imagine, they had all kinds of problems with it. One of them was starting. My brain is like that car. Doesn't want to start. 

Enclosed is a picture of what I have to wear if I go out of my room. Any visitors, including docs and nurses have to wear that in my room. Can't get germs. I wish they had it in pink. 

Thursday, May 7, 2009

The Stem Cell Harvest

It's Springtime here in Houston. The morning dew glistens in the Texas sun. The smell of bluebonnets fill the air as children stroll to school and dads shuffle off to work. And in a small corner just off Highway 59, the Stem Cells slowly but surely fulfill their potential for a full bloom. This five day tradition begins at dusk with a hydration drip. And as the rooster crows in the distance the next day, the chemo begins to slowly fall from the IV bag, only coming to the very bottom four days later. This time-honored process continues as men, women and children everywhere wait anxiously for the stem cells to appear nearly two weeks later. In the meantime, Stem Cell farmers toil in the fields day and night to make sure every cell reaches its full potential. Only the very best, ripest cells are chosen. 

Tuesday, May 5, 2009

An update with Grackles

There are computer programs on the Net where you can see how you look when you're eighty or ninety. I don't need those. The last week, I've grown pretty old.

I've had a pain in my gut and nobody can figure out what it is. It keeps me up a little at night, along with the usual worrying crap. I need to be in the best shape to go into the Stem Cell process because it basically breaks your body down completely. Even a cold is a big deal. This isn't the best shape. 

If you've been following this blog, you may know that the last chemo has gotten me into a partial remission. The cancer has gone down quite a bit. Francine is definitely dead. Carlo isn't. Since then I've learned that the cancer needs to be completely gone for me to have a really good chance of kicking this. The odds go from fifty-fifty to more like thirty-seventy. 

So I've been trying to debate whether I should have another dose of chemo to get it down. It's not as easy as just getting poisoned. The problem is if I get another dose, there's no guarantee it'll go down. The cancer could do the opposite and start to grow again. Then I'm in a world of crap.
My doctor has advised me to go ahead with the Stem Cell Transplant. He thinks I've responded well and doesn't see the point in risking it. Just to be sure, the doctor now wants to do some radiation treatment after the transplant. But he keeps telling me, "We've got to think positively. We've got to think positively." He's saying this way too much. Like, ya know, as if he were an Indian scout and I was Custer riding a trail to Little Big Horn River. As with seemingly everything these days, there are problems with radiation. 

I met with the radiologist today and boy did she have a few things to say about me. She considers me a "very difficult case". You see, when most lymph node cancers grow back, it's usually the same lymph node or one or two neighbors. With me, it's been my whole left side. It's grown all over the place like weeds. So what is she to do? Zap my whole side? If that's the case, then I got a whole list of side effects to live with and at this point, that's fine. But there's the realistic chance that this is just a futile effort. I'm sicker than most. It just won't stop growing and who knows where next. She's bringing my case up to the board of radiologists for them to discuss because she just isn't quite sure what to do. And when someone here doesn't know what to do, well, it's really "difficult". This is sort of like when Greg Reifel went to his Entrepenuer meetings to talk about Tom, Dick & Harry. Usually he came back with all this advice and then we'd completely ignore it.

Tomorrow I have an operation to take out the needle that's in the side of my right arm and replace it with a needle that goes into my chest and down into a vein that sits on top of my heart. Thursday I get chemo and start the process of Stem Cell Harvesting. Now, the smarter ones out there will say that this chemo could put you over the top and into complete remission. Possibly. But it's different chemo. It's ICE without the C. So it's IE. That didn't work on me too well. The point of this chemo is to create a bunch of stem cells and not to get me into remission. Plus, with my gut the way it is, it could be messy. I puked and puked on this stuff last time with a stomach that worked. It's nasty. 

On top of all this, I miss my wife and kids. More importantly, they miss me and it kills me that they miss me. Well, at least my kids do. I think my wife is shacking up with Pedro. She digs the Speedo look. Good for her. Conner is having one of his best years at baseball. I guess every game he makes a spectacular ESPN catch at shortstop. His teammates call him Superman. I dreamt all my life that I would watch my son play baseball as a kid like my dad did but instead I'm stuck in Houston watching Real Housewives of New York.

I wish I had happier news or was funnier. I will say that we play much better basketball down here as the Rockets are still around and the Bulls aren't. Also, and Dunbar will love this, I've gotten into bird watching. That's right. I may not be in complete remission but I am now a complete geek. They have these cool birds down here, real attitude scavenger types, and I downloaded the Bird Ap on my iPhone to see about them and any other avian friends. I found out that they're Boat Tailed Grackles, indigenous only to the coastal Gulf of Mexico region. Here's a picture of one. He's a little hard to see but trust me, he's there. He's taking a bath. Bob Volkman will be having nightmares of this.