12. onward

Ahh. Feel pretty good this Tuesday morning. I'm thinking life is a like a construction project. Very difficult, unless you've got the right tools, in which case it's a pretty straight-forward challenge and can even be enjoyable.

Even though I forgot to take my steroids Sunday night in prep for chemo on Monday, it wasn't so bad. They just pumped 'em into me along with the benadryl and erbitux. Made me a little more woozy than last time, but by 5 I was pretty much back to normal. A little later Nancy came over and lead some yoga and that was great. It's such a good way to be physical without overdoing it. I like the gym too, but yoga is gentle and demanding - a winning combo. I also got 'scrips for Ambien and something to calm my acne and an opiate in case the pain really kicks in. The ambien is great. First full night of sleep in who knows when!

The weather today is lovely and my throat is not killing me! Whoo-hooo. The white patch, now patches, in my throat are mucicitis, common side affect of radiation. I've got some numbing spray which I'll use before eating. I am still trying to eat as much as possible, but it is pure, slow, boring work. Everything is now just matter for ingestion. Even though I can smell it doesn't translate to taste at all. The entire challenge is finding consistencies that are bearable. Grainy type stuff is out, lettucie stuff NG, but wilted spinach with goat cheese works, oatmeal is good with milk, soups still work, yogurt's usually delightful bitterness is now an agonizingly sourness, spice is verbotten, eggs can be good or revolting depending upon I know not, etc. Very hit or miss.

I think I'm going to drive to Pittsburgh for Mirm's memorial on Friday with Rich, who's volunteered to stop by on his way from DC. It will be much better than flying and dealing with packaged airplane air and all the other inconveniences. In exchange I just have to deal with Rich. I've got it made. I'll just start moaning or something and he's at my beck and call. Maybe I can lay out a nice bed in the back. He lives to serve. This will earn him his angel stripes. Believe it.

There's a guy who gets radiation right before I do who has pretty much the same problem. Never smoked, or drank, but got tongue/throat cancer. He's pretty pissed at it. I understand but I have a hard time thinking, 'damn all this time I could have boozing and smoking it up!!' Not that I haven't enjoyed myself. Anyway, I feel for this guy. He's in his 5th week of radiation and is clearly in pain. When I first met him we'd exchange pleasantries or at least info. But now he quietly nods, his face in a grimace. Last week he said he was having a feeding tube installed because he 'just can't get anything down.' I think the tube's in now. But he hasn't mentioned it. I am doing my best to be positive with him, and with me. But it's like a ghost of things to come. This is serious business.

One thing that helps me is to recognize that this is healing pain. It's different from the mysterious destructive pain that I've suffered for all these months. There the pain was magnified by the question of what it was and where it was going. Now, at least, I know the pain is removing the tumor and hopefully, reducing the danger. And, it has an end. The doc told me that it's bad until somewhere around the end of the 5th week and then the body sort of recognizes the end is near and the pain lets up a bit. It continues, but at some kind of plateau. Not so bad. That's less than 3 weeks from now. Not even a month!! And it means May will be the sweet month of healing. Nice!!

On those good notes, I big you adieu. Enjoy your days, all!

PS Oh one more thing: we got a bill yesterday for $9,000 for one night in the hospital after I got my feeding tube. First of all: $9k for one night!!! Ridiculous. 2nd of all, our doc assured us that it was necessary my staying that night and that insurance would cover it. Otherwise I'd never have stayed. But the insurer disagrees. Now we have to go through lots of hoops to, hopefully, get it fixed with our insurer. How do poor folks do it??

11. Dawn breaks

It's the morning of chemo #5 and week #3 of radiation. I'm feeling it! My mouth is sore all over and there is a white lesion in the back of my throat that I'm going to be asking about today. Maybe it's just a normal side effect. But to me it seems like the radiation beam is a little off course and hitting me at that point. My mouth is so sore that even flossing is kinda difficult. I skipped it this morning, but will have a go this afternoon.

I'm continuing to eat but it's pretty much out of commitment since there's not much I can taste anymore. I got prescription ointment for my face and that's helping to bring the 'acne' under control. I haven't used the feeding tube yet but will probably give a try later this week.

I have managed to visit the gym twice. Even when I'm tired if I work out for a little while I feel very good afterward. At first I was self conscious about showing my 'tube' in the steam room, but I've got it under an ace bandage so it's pretty discreet. I even revealed it when I showered and no one seemed to care, if they even noticed.

I think this is my last week of work. It's getting harder to concentrate and I'm pretty tired by mid-day. Sleeping is harder, but I'm not sure why. One doctor said it was probably depression, but I don't feel depressed. It's more that I just don't feel that tired and it takes a while to get to sleep. Then I wake up every few hours and go through it all over again. Betsy is also having trouble sleeping. When I stop working I'll probably just stay up till I'm tired and get up if I'm not.

The downstairs bunker is almost complete. Just in time.

Friends and acquaintances keep popping up. I found a couple of friends via Facebook that I haven't seen since college and am looking forward to reconnecting with them. I also heard from a high school buddy, Jeremy, who is now a doctor in Boston. He has started a non-profit organization to promote art as an integral part of the healing process. He's visiting NYC on Tuesday I'm getting together with him to learn more and catch up.

So, life continues. More to come after today's marathon session. Hope everyone is enjoying the beginnings of Spring!

10. life intrudes...

...or should I say death?

I think maybe I've been giving this cancer a little more attention than it deserves. But cancer can be a selfish bugger. This evening I got news that has put it into perspective.

Mirm, mom of Mike, my best friend growing up in Pittsburgh, died over the weekend. Mirm became my second mom because I spent so much time over at his house, playing music, taking pictures, listening to music, and just generally loafing, experimenting and growing up. She was a ball of fire. She painted, made sculpture, furniture, and clothing, among other things. She also always had a fully stocked pantry and fridge that she was aching to share with us at any time of day or night. She drove us wherever we wanted to go in a succession of big VW buses. She was always upbeat, positive, complimentary, charming and unconsciously flirty. When I saw her about a month ago, after she'd fought a long battle with congestive heart failure, she was confined indoors, tethered to the hose of an oxygen tank and yet she was still pretty much the same. Although she was a little less able to jump around serving everyone, she was upbeat, curious and flattering. She asked how I was doing. Said my gray eyebrows made me look distinguished.

I called Mike tonight after I got the news. He told me when she was diagnosed back in October or so, the doctors said she probably wouldn't live more than a month. But Mirm had her own agenda. She wanted to make it to Thanksgiving. Then Xmas. Then she wanted to see the Steelers play in the superbowl. Then she wanted to see Barack Obama get sworn in. Mike called her the "Mirminator."

In the meantime she brought her family together. She stayed with Mike's brother Cedar in Pittsburgh and Mike moved back from North Carolina to help organize her things and to spend time with her. Although he says it could get rough, he feels incredibly lucky to have been able to be with her all this time. Mirm deserved it. For years after her husband, Chuck, a big bear of a guy, was felled by a stroke she visited him daily at the nursing home where he hung on, barely conscious. After he died she seemed to blossom, traveling, dressing sharply in the southwestern style, doing art and entertaining in her tidy 2 bedroom apartment.

She was a great lady. I'm going to miss her. The family will be hosting a memorial service in Pittsburgh in two weeks and I'm going. If I didn't have a reason to be strong and show this cancer who's boss I do now. I want to say my goodbye.

9. going for the (other) burn

Saturday

Yay! Went to the gym today for the first time since getting my feeding tube installed and starting treatment. I managed to run 5 laps before the tube started to hurt, but they felt good! Then I was able to do almost all of my routines on the machines, with the exception of pull-ups. For some reason they seem to use the specific stomach muscles where the tube is inserted. However, surprisingly, I could still do abdominal crunches (within reason). Go figure.

Afterward, Betsy and I had planned to go into the city and visit MOMA, but the thought of all those people and the travel time, and etc was a turn off. Instead we went for a hike with the dog at a neaby park. Very pleasant. Then we got groceries. It's good to be able to do normal stuff. Tomorrow I'm gonna do a little yoga.

My 'acne' is pretty pronounced now so I wear a ball cap to try and shield the unsuspecting from the sight. Swallowing is getting a little harder. It's not that it hurts exactly, more like it's just kind of sensitive and will hurt soon. My jaw muscle is definitely feeling tired, I assume as a result of the radiation. I regularly do an open and close exercise my dentist taught me. Most noticeable: I am losing my sense of taste. Food is getting much more matter-like and it is harder to eat a lot of it. Speaking of which, I was reminded of, and just re-read, a great New Yorker article about a genius chef named Grant Achatz who was treated for tongue cancer a couple years ago. He had a much more serious case and it required much more intensive treatment. He lost his hair during his chemo. But he seems to have recovered well.

One of the points made by the article was the irony of this crazily inventive chef losing his sense of taste. He had to have his assistant chefs taste for him as he invented new dishes. He also used his other senses to gauge taste, like smell and sight. And then when he slowly began regaining his taste, it was like he was re-born and used the experience to develop new dishes and menus. It's a great example, for me, of the many sides of this adventure. I completely recommend the article. It's here: http://www.newyorker.com/reporting/2008/05/12/080512fa_fact_max.

I must admit I am proud to have some sort of kinship with this dude, albeit a painful one. There are definitely some cool characters in the big C club.

I'm trying to keep track of what I can still taste. I've had a lot of pasta and tomato sauce the last few days, but I can no longer taste that. I had turkey and sweet potatoes and rice for lunch the other day. Couldn't taste that. I can still taste peanut butter, guacamole, corn salsa, lox, olives, vinegar, capers, cranberry juice. Not sure about sugar. I think I still can taste salt.

So far I am still able to grow a beard. But it sounds like I'll be losing that for sure, and not just on the afflicted side of my face. Since the radiation is shot in 360 degrees, I'll lose it on both sides. That should be kind of weird.

I feel a little more tired in general. It's a little more difficult to concentrate on things. I don't sleep all night, usually awakening around 4 or 5 for a couple of hours. I'm still going to work, and getting things done. I'm trying to get together with friends before the intensity kicks in. It's like I know I'm going away for a while and I want to see as many people as I can before I go. I had been planning to visit friends and family in Pittsburgh, but I think it's probably too late to go now.

We're finishing setting up my downstairs 'den' this weekend. I found a cheap recliner on Craigslist, borrowed a dorm fridge, and we're going to look at inexpensive flat screen tv's. Daughter Esther and her beau Konrad and some of their friends have taken care of the yard work. (Now there's a perc of illness if ever there was one.) I've almost got my taxes done and we're trying to get anything else requiring thinking and attention taken care of while we can. I gargle with a special rinse 4 times a day. It's supposed to help promote saliva. And I brush with special fluoride toothpaste 3 times a day. That's to keep my teeth from crumbling from the radiation.

I'm feeling like I'm getting pretty well hunkered down and ready for game day. Or is it the twister? Or the quake? Well...something's coming!

8. short & sweet: good news!

My radiation oncologist told me this morning that the tumor has shrunken by half! Already. After 4 zappings and 2 chemos. I still have to go the full 7 weeks, but he said that is a very good sign. Aside from my developing acne, which isn't so bad, and some tiredness and dull headedness (which may very well have nothing to do with the treatments), I haven't even experienced much in the way of side effects yet.

I'm cautiously optimistic.

The radiation tech gave me a web address for more info about the treatment. It's pretty interesting, for any of you geeks out there. www.tomotherapy.com. It's kind of an advt for the equipment, but you get a good sense of how the thing works. Boy are we lucky (those of us who need hi-tech treatments) to be living now. The device can regulate the hits of radiation so precisely it preserves the more sensitive areas surrounding the cancer.

I worship at the altar of science. Amen.

7. night thoughts

It seems like my sleep pattern has been kinda screwed up. I wake up every morning around 4 or so. Sometimes I have a cup of tea and go back to sleep. Other times, like now, that doesn't work so well and I'm left sitting. It's not that I'm in any pain, or particularly anxious about stuff. But I guess I've got a little thinking going on.

I wonder what life will be like on the other end of this. Right now I'm identifying myself as pre-treatment, since I haven't yet felt any really intense effects. The worst of it so far was that it took a couple days longer than I expected to settle in to the feeding tube. And I'm starting to get a little bit of acne. But the cancer itself is hiding. It used to hurt much more and interfere with my daily life. Now the most I feel is a little catch in my throat when I eat. Oh, and it does take me twice as long to finish a meal because my tongue movement is impaired. But that's it. Nothing I can't live with.

A nurse told me a couple of weeks ago that I'm going to hate her and everyone else in the hospital before long because of the pain I'll soon be going through. That's a new experience for me - knowing beforehand that something is going to hurt a lot. I imagine it's sort of like a mother-to-be knowing that what's to come is not going to be easy. On the other hand, there will be a pretty nice payoff afterward. Same here.

I'm not thinking about the pain that much. My mind wanders more towards thoughts of how I will be changed after this journey -- not physically, but mentally, spiritually. I look at this whole experience as a lesson, or a test, and I wonder what I'm going to learn. I hope I prove to be the person I want to be: brave, compassionate, open, and purposeful. There are times when I've had all those qualities. But I've also been a coward, insensitive, self-centered, and rudderless. My goal, as much as I can control it, is to vanquish the latter traits in favor of the former. To burn them away with the tumor. Sometimes I'm afraid I'll come out the other end of this the same as I went in. That would be a waste. I don't just want to be cured of my cancer. I want to be cured of a bigger malaise, made better than before. Self-doubt, fear; sometimes I think that's what caused the cancer in the first place. I know it will take more than getting through this treatment to overcome that dis-ease. I have to change in some deep way. And that scares me the most.

Good night...uh, morning!

6. Post play

Alright! First double header is accomplished.

1. Radiation. Went over procedure. Strapped me to gurney. Installed 'mouth gag,' which is exactly what it is: a gag inducing chunk of clay, in mouth. Strapped face restraint over face and locked it down. Ran me through machine for about 15 minutes, and that was it.

2. Chemo. Longer wait. Saw doc. More wait. Name called, proceeded to infusion room. Hooked up. Slower drip than before, starting with benadryl. No reactions! Over in about an hour and a half. Was able to watch Jon Stewart righteously & satisfyingly grill cnbc's Jim Cramer, who never seemed to get what the problem was/is. Tired but functional.

3. Nap time. The dog and I will be sawing logs for an hour or so.

Could have been a whole lot worse. How about that?!

5. Here we go!

Show time!! Had my steroids, my bulking up shake, my first electric shave (no more razors), and ready to go!!

4. C-Day!

This is it. 11:12pm on Sunday 3/15. Tomorrow morning at 9:30 I get my first radiation treatment, followed at around 11 with my second chemo treatment. I've taken my first dose of methylprednisolone, the steroid that is supposed to prevent my allergic reaction to erbitux, the chemo agent. I take another 2 hours before treatment.

How do I feel? Apprehensive. Excited. Anxious. Relieved.

I have a new image that I will keep in mind throughout this treatment. The elimination of the cancer is also the elimination of all the things that are holding me back from being the person I really want to be. Goodbye fear. Goodbye selfishness. Goodbye delusion. Yeah I know it takes more than removing the tumor to make all these things happen. But it's a good place to start. The goal is to be healthy, happy, whole, engaged, motivated, alive!!!

Thanks again to everyone who has already been so great even before the real work has begun. Betsy and I have had so many great meals, conversations, excursions, & offers of help that I am humbled and very grateful. In fact, so far, my experience has been almost entirely positive. That's so weird. I've already shared some of the negatives, probably because those stories seem more dramatic. In the end, though, I think all the great support is really the story. Thank you, thank you, thank you.

That being said, I do plan on telling the story of getting my feeding tube, but not right now. I've had the thing for just over a week. I think I may be starting to adjust to it. It's not that it's a big item. It's just inconveniently placed about an inch above my belly button. So things like bike riding, running, lifting all affect it, and so far, not for the best. Hopefully once it's settled in it will be less annoying.

One cool option with the tube: I can set it up to slowly feed me a day's worth of meals at night while I sleep. (The other option is regular feedings during the day.) That sounds kind of astronauty or futuristic to me. The day will come when we no longer burden ourselves with the need to stop periodically during the day to chow down. Think of all the time we'll gain when we don't spend it masticating! I'll report back on how that works out.

And now I'm gonna try and get to sleep at a reasonable time so I'm rarin' to go tomorrow.

Ready for liftoff Captain!

Wish me luck!!

3. Tubing

My PEG tube (aka feeding tube) installation was successful. I'm spending the night in the hospital because the doc wants to make sure it doesn't get infected. It feels kind of like I got punched in the gut. And in fact, I guess that's literally what happened, but it's more like getting hole punched. They put a fiber optic light down my throat into my stomach. The light shines through the outside of the skin and shows them where to punch the hole. Then they run a string down my throat and out the hole, which then pulls a tube with a grommet at the end down and through. The grommet keeps it from coming out. They put another grommet on the outside to anchor it in place and there you have it: direct access. Of course, I was sleeping throughout, but I think this is more or less the procedure. But let me tell you, as yucky and invasive as it may sound, waking up afterwards was nothing compared to awakening after getting the biopsy of my tongue cancer. That was horrible. I was choking, gray and out-of-it. I went back to sleep. Then awoke again with a burning throat. Took some time to return to normalcy. The feeding tube aches and it's a little hard to sit up and walk but I can tell it will be ok in a day or so. A little inconvenient, but nbd. And a couple percocets didn't hurt. A very nice nurse demonstrated the procedure for using the tube. It is a little gross. I'll spare you those details for when I actually start using it, if in fact I do. There is a chance that I may never need to use it at all, if I can continue swallowing throughout the whole procedure. But judging from other case studies, that's pretty unlikely.

2. Autonomic Reaction

Wow! I am humbled, grateful and energized by the responses from you all out there! Thanks so much for all your encouragement. I still feel sort of like a sham, since I haven't really gone through the hard part yet, but I guess it's kind of a 'pay it forward' situation. I've now got this large reserve of love and compassion from you, and what some might call humor (Daves), to call upon when the going gets tough.

For those of you hungry for more details (Rich), I apologize for my delay. I'm still working as much as possible and the rest of the time is spent preparing our downstairs bedroom to be my HQ for world domination. We're looking at recliners (supposedly the only way to sleep after a couple of weeks), got a new futon mattress, and thinking about what else will be useful when things get heavy. OK, enough stalling...

When last week started I was still living in the land of denial (a word that seems to come up in all these C blogs). I had big plans: to host a pre-C treatment party before everything got underway, a quick trip to Pittsburgh to visit friends and relatives, go see music with new friends, etc., etc. Ah but even the least laid plans...

The original idea was that I'd go on Friday to get measured and prepared for radiation treatment and have my first infusion of chemotherapy (with the radiation treatments starting the following week). With four whole days to calmly prepare myself I was musing over all of the fun things I wanted to do, as stated above. But after a conversation with a chemotherapist friend of a friend I learned how quickly mouth cancers, like mine, can spread. It no longer seemed like taking a leisurely pace was such a good idea. A couple of weeks had already passed since I was diagnosed with the tumor on my tongue, and it had been 8 looonnnggg months since I first felt pain in my mouth. So I called Colleen, the coordinating nurse, and pushed for an earlier appointment. Maybe just a day... She said "I'll get back to you." I figured I still had the week. And then, lo and behold, within an hour she called back to say the appointments were now on Tuesday. A cold chill climbed up my spine.

On the one hand it was a great lesson: push, push, push and push some more. Like they say, "it's your life, bud." On the other hand, viewing my new appointments from the perspective of today being Monday and tomorrow being Tuesday it was suddenly a little too real.

Even still, it didn't sound so bad. An hour or so to get measured and fitted for radiation treatment and a couple of hours for the first chemo treatment, which wasn't supposed to be too hard. (The acne doesn't kick in till later.) Seemed manageable. So I headed off for St. Barnabas Tuesday morning in a pretty chipper mood, accompanied by my friend Nancy, who generously agreed to help videotape the proceedings. (I've been trying to make a personal documentary of this experience, but so far I'd shot most of it myself.)

First we met with my radiation oncologist and he reviewed what we were doing. He made clear, again, that treatment is going to hurt. He confirmed that I was scheduled to get my feeding tube - I was. And went over my recent visit with my dentist where I was started on a regimen of brushing with special prescription super fluoridated tooth paste. Radiation is not good for teeth.

Then he asked me if I was going to beat this. I said, 'yeah!' He said he believes the mind is as important as the body in healing. You've got to think positive, be positive. I believe that, but I don't hear that many med folks say it.

In the end the measuring and fitting was pretty cool, although a little uncomfortable. I had to take off my shirt, put on a gown, lie down on a stretcher that feeds into a CAT machine. They put a big Popsicle of clay-like substance in my mouth, which was kind of gag inducing. It's to push my tongue down and away from my cranium, which is done to protect the upper part of my head from radiation. Then a heated plastic mesh thing was put over my face and molded on to it. I was told to grab handles at my side which were adjusted to pull my arms and shoulders down and away from the radiation. My head was being held in place by some sort of device so my body was kind of stretched out ala the rack. They gave me a tiny tattoo on my chest with a pen and ink. It's used to center the laser thing that will shoot the radiation.

Once the Popsicle was in my mouth it was pretty much impossible to speak. When I was grasping the handles and locked in place I began to feel a little like the guy in The Diving Bell & the Butterfly, except my eyes were covered by the plastic mesh stuff, so I couldn't even communicate by blinking. Then they shoved me into the CAT machine until I was done -- about 15 minutes. The plastic mesh will be used to make a cast of my head, so they can figure out where to shoot the radiation. The CAT is used for the same purpose. All in all it wasn't a bad experience.

Then I watched a video about living with cancer treatment. Don't remember that too well. Then I had a talk about nutrition and feeding tubes. And then I realized I was 45 minutes late for chemo, which was supposed to start at 11. They were called and informed I was on my way and I packed up my stuff and headed over.

The chemo area is in a whole other wing in the hospital. As we walked the halls, people in various states of consciousness were wheeled by on gurneys, which always strikes me as kind of a very personal thing. So I tried not to stare. We passed the in-house McDonalds. I'll skip the obvious comments/theories about why they have one of those at a hospital. We took the elevator up a floor.

The sun shone brightly, and I might even say a bit happily, though the large windows lining the waiting room. There were maybe a dozen people spread out through the wood appointed space. This is why I like St. Barnabas: it reminds me kind of a nice hotel. Not quite a Hilton, but definitely many steps up from a Holiday Inn. I gave them my name, sat down and waited. And waited. And waited. Finally I was called in to have my vitals taken and then directed on to a second nearly identical waiting area where another dozen people were sitting. Again I sat and sat. An hour went by. My friend Nancy had to leave for a meeting of her own. (At which point she had her own adventure, involving a taxi that never showed, a bus that she thought was going in the wrong direction, and finally a hitch-hiked ride to her door with a kindly psychotherapist.)

Finally I was called in to room 7, my own personal chemo space. It was a small, pleasant room with a recliner in the middle and the IV machine next to it, and some other medical-type apparatuses distributed around. A flat screen TV mounted from the ceiling was playing Law and Order, silently. The nurse came in, explained what was going to happen and hooked me up. I'd receive medication for 2 hours and then stay another hour for observation. Nothing to it.

First they dripped in benadryl to lessen any allergic reactions. Then the stuff itself: erbitux. 5 minutes went by. 10 minutes. So far so good. Reassured, the nurse left. About 15 minutes in I began to notice that the tumor location on my tongue was itchy. Then it started to burn. "Amazing," I thought to myself, "this sh*t really works. It's burning that mofo out of there." A couple minutes later my palms felt itchy, then my feet. I got a lump in my chest that felt like acid reflux. My nose got stuffed up. The joints in my hands felt stiff. I gave Betsy a call to say I was going to be late, during the course of which I mentioned some of my symptoms. "You better tell them," she said. I got off the phone and pushed the call button on the TV remote. Nothing happened. I pushed it again. Still nothing. I walked into the hall. No one around. I sat back down. Finally a nurse came in and I said I thought I was having an allergic reaction. She quickly switched off the erbitux and replaced it with distilled water. Then my nurse came in. Then about 8 other people came in. After a lot of discussion they decided to give me more benadryl and see if I could continue treatment. For about a half hour that worked fine. Then my hands started itching again. More benadryl. This time I managed to make it through the rest of the treatment.

I had planned to drive home, but I was now so pumped with benadryl that that was forbidden. So Betsy called friends, one of whom could drive a stick, to come and get me and my car. Once home I was achy, tired, grouchy. I felt better after a bath and dinner. But all night I had a headache and was incredibly dehydrated. The next day when I called my doctor he said they'll try steroids for the 2nd treatment.

I was curious why so many people had flocked to my room when I had my reaction so I read some material I'd been given about erbitux. Turns out that side effects can (rarely) include heart attack, lungs shutting down, etc. I got off lucky. Plus I figure that since the idea is to aggravate that sucker on my tongue, at least this shows my body is responsive to the drug. Oh yeah, and one other side effect: depression. This is unfortunate, since that's the last thing you want in this kind of situation. And I was depressed. Here it was the first treatment, the one that's supposed to be fairly benign and already I was stressed out and hurting. How on earth would I be able to keep it together when the real pain kicked in? But that was then. A couple of days later and I'm good to go again.

Which reminds me of something I think my chemotherapist said. You don't remember the bad stuff. It's just human nature. So even if I live in dread of what's to come I can take some solace in knowing that I won't remember it later.

That's it for now kids.

Next up: in goes the feeding tube, and hurrying up and waiting!

1. Start here

Hard to believe it was just a few weeks ago that I was diagnosed with a malignant squamous cell tumor on the base of my tongue. Seems like forever. Maybe that's because I've spent the last 8 months trying to figure out why I had a pain in my mouth. After seeing 2 ENT docs, one of whom said I was grinding my teeth and the other that I had TMJ, enduring a root canal and a tooth extraction, an acupuncturist finally said "hey you know your tongue is crooked!?" That lead me to a neurologist who had me get a neck CAT scan which showed a lump on my tongue. I took that to a 3rd ENT who said, "cancer." When he took a biopsy it was conclusive. Stage 1 or 2 out of 4. That means it could be a whole lot worse. Mine hasn't spread, at least as far as a PET scan could tell.

During this whole ordeal I was checking the internet and scaring the crap out of myself. There's a surgical way to remove the tumor. That involves splitting the jaw down the middle in order to get to the tongue. One doc described it as 'flaying.' The other procedures are chemo and radiation. I've opted for the latter two. I also learned that these cancers are quick spreading. They can turn up in the lymphnodes or worse, in the lungs, in which case it's not curable. When I read this I started to get a little nervous.

Once we (my wife Betsy and I) began to meet the specialists it was like we'd found a whole new breed of doctor. Smart, inquisitive, attentive, and compassionate. The extremely voluble medical radiologist stressed from the first moment, "listen to me, this is curable. It won't be easy, but it is curable." That is now our mantra. When I asked what would happen if I did nothing (silly me) he responded "pardon my French, you're f**ked!" Convinced me. The radiation treatment will be 15 minutes 5 days a week for 7 weeks. The first few weeks won't be so bad. The rest will be. It will become hard to swallow. Saliva could become "rope-like." The hair will stop growing on my cheek, and will not come back. The skin will hurt. I'll lose at least some of my sense of taste - perhaps permanently. I'll be more susceptible to mouth infections. And for three years after treatment I'll be at higher risk for the recurrence of cancers.

The medical oncologist was more understated, but no less direct. He said there's no solid proof that chemo helps in early stage cancers like mine, but there's also no proof it doesn't. And it does help in later stage cancers. So, he said, it's worth using it to attack my cancer with a "bigger hammer." There are side effects however: possible diarrhea and definite acne. In fact the acne is a sign it's working. The acne could become quite severe. I get chemo once a week for about an hour and a half.

And one more thing. I need to get a PEG tube, tomorrow. That's a stomach tube. In case I end up not being able to eat I can pump the food in and maintain strength. I might not need it, but it's better to have it already than to interrupt treatment to get it.

So there you have it. The makings of a new adventure. At first it seemed sort of exciting but as reality has set in, in the form of my first chemo session yesterday, it is getting a little scary. Luckily I've got some great friends & loved ones caring for and feeding me. Did I mention that I've got to gain 10 pounds in a week? Also big props to all the folks at my job who are so understanding.

The big challenge, as I see it: maintain a sense of humor while fully appreciating the cold, hard reality of the situation. Let's see how it goes.

In future episodes: allergic reactions to chemo! And PEG tube installation! Stay tuned.

"What does not destroy me, makes me stronger." Frederich Nietzche