My nurse practitioner, a sweet woman well-trained in the art of side-effect management (not to mention mixed martial arts) smiled kindly, maybe a little too knowingly, and said that I shouldn’t get too cocky. “The side effects build up over time,” she said. “The next cycle could be worse.”

And during those first days of this second cycle, I thought I was going to be in for a lot of trouble. I spent a couple nights not sleeping and then waking up in the morning barfing. Then, just as quickly, it passed. For the most part I’ve been handling the second cycle well – especially compared to what others have gone through.

Sure, one night recently I power-hurled all the Sutent I had just swallowed and found myself in a bit of a sweaty fog, my back up against the cold tiles of my bathroom wall. I was in a bit of a delirium wondering whether, if I tried to go back to bed, I’d end up spewing vomit all over the walls Jackson-Pollack style. The upside is that I could snap a picture and sell it as modern art for a fortune.

I should confess, I did have a couple of drinks earlier that night. A couple. In a past life, that would have been the equivalent of teetotalism. In this post-cancer life a couple of drinks is the equivalent of beerbonging a bottle of Jack Daniels. Evidently, those warning signs on the Sutent packaging about not drinking alcohol while taking this drug are quite literal. Who knew?

As I near the end of the latest cycle, I am feeling a few of the other side effects more. Fatigue may be the most significant. Fatigue is an interesting thing. Many people think of it as just being tired, the sort of tired you get after a poor night’s sleep. Go home and take a nap, and all will be good. Fatigue is different from that. Sleep doesn’t have anything to do with it. It’s more of a sense of feeling drained of energy, like you’d just run a few miles or come back from a weekend Twister conference. In meetings at work or in conversations with friends, you have to take extra precautions to not inadvertently slide down in your chair. Or just kind of numbly stare at people – which can come off as creepy. Or angry-looking. Or maybe arrogant. A girlfriend in college used to do this – and, truth be told, she was angry, creepy and arrogant most of the time. (We didn’t last long. She thought I was an egocentric, patriarchal bastard.) Should I reach a point where I am curled up in the fetal position and writing memos to coworkers with a crayon, I suspect I may need to reduce the dosage. But for now, I feel it’s under control.

No surprise – my taste and appetite have abandoned me again. It’s karma for refusing to eat squash when I was a kid. My mom would always try to force me to eat squash – “Just try it, you’ll love it!” – and I would just stare at it. It was kind of angry, creepy and arrogant on my part, now that I think about it. In any case, the down side to having no sense of taste is that everything tastes bad; the up side, though, is that everything tastes more or less equally bland. So I can eat squash now and make my mom proud.

The one new side effect I’m experiencing (other than a much more significant degree of fatigue) is more of a neuropathology issue: My entire body tingles. It’s a kind of chilly tingling. I doubt many of you will be able to process this, unless you’ve been through significant surgery lately or are a drug addict (I’m not judging), but it feels a little like you’ve just popped several Oxycodone or Percocet. Except it doesn’t go away, it’s a continuous sensation.

I do admit that I have to undergo some minor outpatient surgery on Wednesday, but not a big deal. I’ll get some Michael Jackson Juice (Propofol, for those of you nowhere near a television with CNN) and wake up a few hours later. Unless it’s administered by Jackson’s doctor. In which case, cancer may be the least of my problems.

The next day, Thursday, I go in for my first CT scan since going on Sutent. The fact that I’m not locked in a closet weeping and demanding pain killers makes me nervous. I’ve weathered all of the treatments I’ve undergone pretty well compared to what others have experienced. But none of them have worked, either. As one friend said: “I hope you get sick so that you can get well.” Hmmm. Am I sick enough to get well?

As an adult I’ve been better. It’s difficult to drag my children into the dentist’s office if I refuse to go myself. Kate already has a file under her bed tagged “Dad’s Hypocrisies.” By the time she is thirteen, it will require a filing cabinet. No reason to give her more ammunition than I have to.

So you know it took some legitimate terror for me to call the dentist’s office recently to cancel my appointment. However, I find that I am often spitting blood when I brush my teeth. A few of Sutent’s side effects are sensitive gums, mouth sores and excessive bleeding. Together, they make a hat trick of dental hell. And that savage harpy my dentist has hired to serve as his hygienist has no compassion. She alternates between humming and lecturing me about poor flossing habits while slicing ravines in my gums.

After discussing this with my oncology team, we all agreed that it would be wise to reschedule my teeth-cleaning appointment until I finished my first cycle of Sutent.

Which, I would like to say, I have now done.

All in all, the side effects have been quite manageable. I’ve heard of some of the trials that others have undergone with Sutent. I’ve received notes from fellow kidney cancer patients who have pointed out that in the last two weeks of taking the drug they have experienced fatigue so great that they couldn’t get out of bed. Or Hand-Foot Syndrome so bad they couldn’t walk. Nausea so bad they couldn’t go far from a bathroom.

I’ve experienced a number of the side effects, but at a minimal level. While I do have some trouble with sensitive gums, I don’t have mouth sores. While I have felt the effects of fatigue toward the end of the day, I’ve never felt I couldn’t put in a full day of work. I do experience nausea at times, but only a hint of it and never resulting in vomiting.

The most significant side effects have been high blood pressure and loss of appetite. I have a prescription to deal with the high blood pressure, so no big deal. The loss of appetite is perhaps the most annoying. It is the result of simply not being hungry, but also the result of one other side effect – a complete loss of taste. Everything I eat tastes like wood glue. I was never a foodie, so there are worse side effects, but you know you’ve entered black days when it’s a chore to eat pizza. Some of you may remember my obsession with Chick-fil-a sandwiches whenever I went to Duke for a treatment. They opened one here in Crystal City and I went by the other day and I might as well have ordered a discarded toupee for lunch. It would have tasted about the same.

I’ve flirted with Hand-Foot Syndrome, but the symptoms were largely brought on by my own stupidity. You can learn a little about Hand-Foot Syndrome at the ridiculously literal website ChemoCare.com. It explains that exposure of your palms and soles of the feet to heat and friction causes drug leakage into your capillaries, resulting in redness, soreness and blisters. The site is pretty specific about taking steps to modify your “normal daily activities to reduce friction and heat exposure [their emphasis].” Suggestions include:

Avoid exposure of hands/feet to hot water, such as taking long showers and washing dishes (Are you reading this, Dena?)
Avoid activities that apply pressure on the palms of the hands or soles of the feet
Avoid jogging, aerobics and long walks
Avoid garden tools, household tools such as screwdrivers, and tasks that require squeezing the hands on hard surfaces
Using knives to chop food may cause excessive friction (I assume their point here is that you should avoid it.)
The list does not specifically advise against playing golf, but … perhaps I should’ve taken the hint.

Anybody who plays golf knows that most of the physical activity of the sport involves friction on the palms (mostly fingers, if you’re any good, but I’ll have to stick with palms) and the soles of the feet. Watch a golfer driving the ball off the tee. Check out the twisting motions of the feet, all the friction on the soles. Or consider the golf grip, the repeated friction of swinging the club. In short: If there were one activity that could be devised specifically to exacerbate Hand-Foot Syndrome, it would be golf. So, of course, I feel the need to step up and play more.

The result? Friends and colleagues may or may not have noticed my newfound effort to make band aids a fashionable accessory. I went out and played golf on Monday and my hands are still blistered. It hurts to wash them, not only from the blisters but also from a general tingling/burning when I use hot water or shave. People may have also noticed that they must walk a little slower when they are trying to talk to me, due to soreness in my feet. And, for good measure, the twisting of the knees that accompanies golf, when mixed with Sutent, results in some pretty sharp joint pain.

As I’ve said, though, these are relatively minor side effects compared to what others have gone through. So I think it’s important to report this: I’m doing great.

And to my friends who are looking to start Sutent, the even better news is this: You are not as stupid as I am. You aren’t likely to do the very things that the doctors tell you not to do. Don’t take up clogging. Rock climbing may not be your best bet for weekend excitement. And stay the hell away from the golf course.

As for me, though, I do stupid things. Ask Dena. I’m Forrest Gump with a sand wedge. I have to tell you, though: I birdied a 502-yard hole this weekend, and that tends to soothe any blisters and put a little flavor back in my food. There’s something to be said for maintaining control over your body, even if that means abusing it a little.

Scared about cancer? Bless your heart, but, no — we were terrified of Baltimore.

Have you been there? It makes Detroit seem like a keen timeshare destination. Watch the HBO series “The Wire,” about the drug gangs that rule the streets of the city, and you’ll get a sense of what we’re up against. We weren’t entirely sure where we were going, and as we navigated our way through the streets looking for the hospital there seemed no end to boarded storefronts and barred windows. The economy has not been kind to Baltimore (but then again, neither has its tax-happy government). We found ourselves nervously stalled at an intersection next to an adult movie theater, waiting for a loitering crowd of men eyeballing passing cars to clear out of the middle of the street. I considered buying a gram of coke just to be polite. Vera, our usually accurate and sultry-voiced GPS system, grew increasingly hysterical, repeatedly urging us to “please make a legal u-turn,” as if she just wanted to turn around and go home.  Dena became a little unhinged herself and starting shouting through the window that she had a Glock and knew how to use it. We were the Griswalds in National Lampoon’s Oncology Vacation, and by the time we miraculously pulled onto the Johns Hopkins campus, free of shank wounds and needle tracks, I wasn’t sure whether to head to the oncology ward or the psychiatry department.

Once inside the Sydney Kimmell Comprehensive Cancer Center – a long-named facility after a large man who dominates the hall via a kingly oil painting on the wall – everything changed. An efficient and kind set of nurses guided us through registration, into the little rooms for the obligatory vitals check, and then into a comfortably arranged lobby with cushiony chairs. Relaxed, I popped open a bottled water and unwrapped a donut from the café, wondering where I might be able to make dinner reservations. I found myself a little annoyed when the nurse interrupted my reverie to take me back to see the doctor.

Dena and I met in an examining room with three doctors who would comprise my research team. They were all kind, attentive and forthright in answering our questions. At times a little too forthright. I actually prefer to be misled on occasion – like when we asked about side effects and the lead doctor told me that death was one that might pose a problem. Dr. Hans Hammers, a German oncologist who previously held a fellowship at Hopkins, explained that the drug could result in autoimmune complications, meaning my immune system more or less going berserk and attacking everything in my body. Perhaps he wanted me to fully understand the risks, but he wouldn’t let the whole death thing go.

“We had one man die from pneumonitis,” he noted.

He paused to let it seek in.

“That’s a fatal side effect,” he added unnecessarily.

I wanted to ask him to humor me. Let’s talk about nausea and fatigue and that kind of thing, but I was concerned how he might respond with his thick and at times intimidating accent. Nausea? Oh, yes, we did have one woman vomit herself to death.

Dena, who attended high school in Germany, brushed the whole thing off with a wave of her hand – “all Germans talk like that.”

In the end, Dr. Hammers made clear that while autoimmune complications were a concern, they were uncommon. Most patients have tolerated the drug extremely well. The research that Dena and I have done support that conclusion. It is one reason that the oncology world is excited about the drug – it’s potential curative effect but also its contribution to “quality of life,” a term you hear quite a lot in this realm. Some drugs can extend life, to use the appropriate parlance, but make you so sick that you can’t function normally. It is entirely possible that I will experience very mild to no side effects, and in any case the drug will not likely interfere with my ability to carry on in life as normal – playing video games at work, pretending to be sick when Dena wants me to do chores around the house, doing touchdown victory dances when I beat Kate on the Wii, and feeding Josie cookies for breakfast so that I can read the newspaper uninterrupted.

I was initially disappointed to learn that I would receive 1 mg doses, via intravenous infusion. I think you know about my history with needles. Moreover, I know that the previous trial tested 1, 3 and 10 mg doses, and I wanted to go as aggressive as possible. However, Dr. Hammers explained that the evidence so far does not show that the higher dosage guarantees better results. In fact, the only complete responder (elimination of all evidence of disease) so far was a patient administered 1 mg. You can find some excellent background research on the results of the previous trial, which supports Hammers’ point, on Action to Cure Kidney Cancer’s website.

The most important statement came from Dr. Hammers toward the end of our consult. He acknowledged that he was biased in favor of MDX-1106, as one of the key researchers involved, but told me that he believes this trial has the potential to revolutionize the treatment of kidney cancer.

The team made clear that they would like to have me in the trial, provided I qualify. Luckily, I have progressive cancer and growing mets, so I meet that requirement. Now I need to make sure that my insurance will cover the trial, and I have to take a brain scan Wednesday. Brain mets would disqualify me.

Alice, the trial nurse who has guided us through every step so far, said that she would handle the insurance for us. We are grateful that she will be our primary contact, as she’s resourceful and caring. Which may sound sappy but matters when you’re in a sterile hospital ward and people are poking you with strange instruments.

Indeed, we left feeling confident in, and happy with, the entire team. Dr. Hammers is a renal specialist and clearly puts my welfare above the research objectives of the trial. Johns Hopkins has a bad reputation in some circles of the kidney cancer community. There have been, and maybe still are, some doctors with notoriously bad bedside manners, and a number of patients have departed the hospital to find care elsewhere. This reputation must have reached somebody of consequence, as Hopkins has hired a number of new physicians who bring sterling credentials and great personalities. I would include the entire team with which I met Thursday in that category.

Based on all of the above, Dena and I have decided to move forward with the trial, provided no unexpected developments arise that would disqualify me. Our reasoning is that this a drug that is not accessible to me otherwise; it has shown positive results; as with IL-2 it has the potential to result in a complete response; and even if I fail to get a response, I can always fall back on Sutent.

Driving through the streets of Baltimore seems like a reasonable risk if this new drug could potentially cure me of cancer. Besides, it’s kind of a turn-on when Dena starts waving around her Glock .

So we made a deal. She said that if I would walk at least one lap around the hospital ward, then I could avoid the Needle. As I am a reasonable man, and will do anything to avoid the evisceration of my intestines, I shook hands on the deal.

And so I began a daily lap, a demented track athlete swinging my IV cart alongside me as I passed others, usually elderly men wearing gowns and black socks.

On the last day or so I recall making the lap with a kind of drunken precision, meticiously following my line of sight down the corridor, yet helpless banging my IV cart into various pieces of equipment that lined the hall. Dena walked alongside me, trying to steer me while I insisted I knew what the hell I was doing and where I was going in the way of all inebriates.

And then — bang! I walked clean into a carrot topped big shoed bulboused nosed honest to god clown. Right there in the middle of one of the hospital’s more critical wards.

As the kids say: WTF? Seriously, a clown?

I worried that if I had seen snow monkeys and japanese goth chicks in my room that I was seeing more of the same here in the hall. Surely there is some kind of regulation banning clowns from cancer wards?

Evidently not. The clown was real. I know this because the creature creeped out my wife, who is notorius for her fear and loathing of all things clown.

So we made small talk, the clown and I.

What brings you to this part of the hospital?
Cancer, you?
Oh, clown stuff.

We went on like this for a while, talking the talk of clowns and cancer, until she offered me a sticker. (The clown, while androgynous for the most part, evidenced feminine qualities.) She pinned it on my chest, as if I had just voted.

The she followed me.

Clowning is a subtle business. There is a fine line between humor and psychosis. Stalking tends to cross that line.

In my room she offered me a paddle ball while Dena eyed her with a good deal of open wariness. Paddle ball is a good way to relieve stress, she pointed out. And I suppose that is true if you are any good at it. I am not, and my heart rate, already in the red, began to spike as I pumped this silly wooden plate against a ball attahced to a rubber string, missing and missing and cursing the clown who had followed me into my room to humiliate me.

Perhaps embarrased by my lack of coordination, the clown eventually left. Later I would learn that clowns and stickers and funny movies are part of the Duke Cancer Center’s program, meant to encourage the ill, and pump their immune systems with positive emotions. There is an entire medical research category — psychoneuroimmunology– dedicated to the study of how emotions and mental outlook can affect the immune system in both positive and negative ways, stimulating the immune system’s “natural killer cells” to fight cancer, like caped white blood cells come to save the day, or suppress those same cancer-fighting cells. Duke is actually one of the leaders in this field of research and medicine, and the clown is one result of such research. I think there may be something to this concept, but I might replace the clown with with something less intimidating. A Japanese goth chick, perhaps.

Last time I was in the hospital, when I thought I was just going to go over my latest CT scans, they surprised me and said, “Hey, what the hell, while you’re here, let’s draw some blood.” They seemed chipper enough at the time, so I followed and we went into this little torture chamber room that has specially made chairs where a big padded arm swings down in front of you and they line you up and stick a needle in you and hustle you through the process like a Ford assembly line. Well, assembly lines have their vulnerabilities. I collapsed in my chair.

In my defense, I will say that I’ve gotten better about this kind of thing. Normally, if the nurse is competent and can hit the vein on the first try, I do alright. However, this nurse was either less competent than most or more psychotic. After the first stick and miss, I walked it off. On the second miss, I winced a little. And looked over at this eighty-something woman who was looking at me condescendingly as she was having her blood drawn. I could’ve sworn she mouthed “Don’t be such a little bitch” at me.

This is where things start to get a little blurry, after the third needle or so. I remember, on about the fourth try, the nurse complaining to me, like her inability to hit the vein was my fault. I remember squeezing that little red ball they give you to pump up your veins. I remember beginning to sweat a little. I remember looking the other way and thinking about baseball. (No, wait, that’s sex.) Anyway, things start to run together a bit here. It’s possible I shouted, “Murder! Somebody stop this woman!” But that is all a little fuzzy.  What I can confirm is the nurse waving (possibly snapping, she seemed to be snapping something) a little plug that smelled like highly concentrated ammonia and burning my nose. It’s possible I grunted some obscenity at this point. I remember thinking I had stumbled into a witch’s coven or some Silence of the Lambs type of thing. Needles, blood, crazy eyeballed lady staring me down and saying something. And then nothing. And then more of that cursed ammonia. And then more crazy eyeballed ladies. Several of them hovering, asking things like, “Do you know your name?” … “Do you know what day it is?” … “Do you know who the President is?” And I’m like, “Yeah, he’s the guy constantly raising my taxes.”

Which seemed to satisfy them because they didn’t stick anymore of that foul-smelling stuff under my nose. They wheeled me down the hall and made me lay down with a cold towel on my forehead and drink orange juice and then they chided me for not eating before coming in and therefore having low blood sugar and screwing up their day. Actually, they were pretty nice and only ridiculed me a little. Except for the one nurse. I could see her in the background doing a little dance and waving my vial of blood around like she’d just caught the game-winning pass in the endzone.

After my most recent CT scan, I was informed that my cancer has recurred and metastasized. It was confirmed last week that multiple tumor nodules have spread into both of my lungs. My oncologist also informed me that the cancer is inoperable. This puts me into what they refer to as Stage 4 metastatic cancer. Not great news – and on top of that it is freaking snowing outside. I do not like cold weather and believe that those people who do are evil.

Dena and I are investigating our options. Five or so years ago, there weren’t really many options at all. However, there has been some excellent research progress, resulting in some new drugs that are showing promise. The drug Sutent tops the list. This drug does not eradicate the tumors; only surgery can really do that. It denies the tumors nutrients, thereby preventing their continued growth and spread. It has varying success rates with different patients and, after time, loses some of its efficacy. Nonetheless, it is a very promising treatment, especially as I’m relatively young and in fabulous envy-inducing shape.

Another option we are considering is something called HD IL-2. It stands for high dosage interleukin. A brand name for this treatment is Proleukin, and they’ve got an excellent website explaining the treatment: http://www.proleukin.com. It can be pretty hard on the body, and I have to get some testing done first to see whether I would qualify. Because of what the body goes through, they require that your heart and lungs be in top shape. I have asthma, which could create a problem. However, the good news is that the asthma is controlled and hasn’t been a problem since I was a child. The success rate of this treatment is pretty low, about 15 percent on average. However, for those who do experience success, it can be quite remarkable – in some cases even shrinking the tumors completely.

As yet, we don’t know which treatment action we will take. We’re still gathering some information and talking to specialists. And drinking beer.

We’ll keep this site updated as we move forward.