My personal experience with Hodgkin’s Lymphoma symptoms began when I was diagnosed with the disease in 2005. When I was diagnosed it was already Stage 3B cancer, the “B” standing for “symptomatic.” Many of the symptoms I hadn’t noticed at all, but some of them I did.

Cough – I’d had this cough for a very long time. I had gotten a cold from a co-worker once and the cough just never went away. I thought maybe it was allergies, and so did the first doctor I saw, who gave me Allegra (prescribed for allergies) to clear it up. In the end, we found that I had a huge, malignant tumor stuck in my chest between my heart, spine and lungs. You can see it in this PET scan picture – the tumor is the big black thing:

The tumor pushed on my lungs and created this persistent, unproductive cough. This was my first symptom of cancer.

Anemia – I would stand quickly and almost pass out. My hemoglobin was a low 8 when I was diagnosed, it should be a 12. I’d been taking iron pills like candy, but they hadn’t done any good.

Weight Loss – I lost 10 pounds…then 5…then another 10 pounds…then another 5…and by the time I’d lost 30 pounds, I knew something was seriously wrong. See these before and after pictures.

The first one I’m around 180 lbs, the second around 150 lbs or less. I felt like I was disappearing.

Night Sweats – When I was diagnosed, my oncologist asked, “Do you have night sweats?” I said no. He asked again, “Do you feel damp when you wake up?” I said, well, actually…yes, I guess I do. I’d thought it was just using too many blankets, but that wasn’t the case.

Fever after 5 pm – By the time I started going to doctors to see what was wrong with me, I started paying more attention to my body. I found that I had a low-grade fever every night after 5 pm. Somewhere between 99 and 101. Every night, and I’d never noticed it. This probably had a lot to do with the night sweats.

High Pulse – Again, my tumor was wedged in my chest, and because of that, it was pushing against my heart. My heart therefore needed to beat faster, so my pulse went up. Way up. It was consistently around 100 bpm, and it would sky-rocket when I did any activity at all.

Again, if you suspect you have Hodgkin’s Lymphoma, go to your doctor immediately. There are some non-invasive things like blood tests that they can do right away to see if you might, in fact, have the disease.

“They don’t,” was my father’s response when I finally arrived in Chicago this evening.

B. was traveling from Toronto to Boston to attend the funeral of a guy my age that, a few days ago, decided he didn’t want to live anymore. She was going to see her friend, the boy’s mother. As she said, “You don’t go to a funeral for the dead, you go for the living.”

B. was from Pakistan, spoke with a curried British accent, and carried little ginger candies from Trinidad with her. That’s about as Toronto as you can get I think. B. told me that the doctors had to put a metal valve in her heart that made her heartbeat sound like a ticking clock.

Tick-tock.

I told B. about cancer. Her sister died last year of cancer in Pakistan. Her sister was a nurse. A nurse who would get out of bed in the middle of the night to fix a patient’s catheter, but wouldn’t put herself in a car and drive to the doctor to check the lump in her abdomen. A little lump that caused a whole bunch of trouble.

Here’s a story about chemo brain I told B.

It was March, about 3 months after I finished chemotherapy. My brain was still oatmeal, and I couldn’t remember a thing. I was angry and frustrated all the time. I don’t exaggerate. It must have taken a great deal of pity and understanding for anybody to stay close to me during that time.

I got out of rehearsal late one night and – BAM! – I drove right into a huge pothole. Blew my tire nearly clear off the rim.

I pulled over and popped the trunk to get the spare out. In the dark, I couldn’t understand how to get the spare unlatched and out of the trunk. It took me twenty minutes of fumbling in the dark to get the tire out.

Already worn out and frustrated, but as yet unwilling to admit it, I jacked the car up and took off the tire. I put on the spare and unwound the jack. I stood up and looked over my shoulder and there it was.

The blown out tire. Still on the car.

See, I had changed the wrong tire. My brain was so wasted that I couldn’t even think straight long enough to change the right tire. It was awful. It was like that everyday, all day. One frustration after another. Names I couldn’t remember, times I’d forget. Sometimes I’d leave the house and drive straight to the store, get out, walk in – and realize I meant to drive to work. Not the store. So I’d walk out, and by then I would have forgotten where I parked the car.

Doesn’t that sound awful?

That night I jacked the car up again, put the good tire back on, jacked up the other side, took the busted tire off, put the spare on. I drove about 10 feet before realizing the spare was also flat.

I was so frustrated I could’ve pulled a whole tree out of the ground if I’d had any strength in me. In the end, my girlfriend came looking for me and we waited in the dark for a tow truck. She found me in a very foul mood.

“My cousin worked at a bank,” B. said, “but she hit her head in a bicycle accident and forgot everything. Total, permanent memory loss. She had to take a calculator to the grocery store.”

B. asked me if going through cancer changed how I felt about life and death.

My brother J. once told me a wise thing about death, when he was young and talking about something completely different. I was 16, and I was worried about going to take the driver’s license test at the DMV.

“Dave, just remember: everybody has to pass it. How hard can it be?” he said.

Which is true. Every driver driving out there on the roads had to pass the same test I was about to take. And even at 16, I’d seen some real idiots driving cars.

And I figure that death has got to be like that, too. No matter what you do in life, good or bad or in-between, everybody has to go through it. It can’t be so bad if everybody has to do it; if everybody before you has done it, and everybody after will need to do it, too.

“When my sister was laying in bed, the priest said, ‘Nobody comes here with a one-way ticket. We all gotta go back sometime.’” B. said.

We had the most interesting stories to tell each other!

(Actually, I think part of it was that B. saw me looking at those propellers over her shoulder and just wanted to keep me talking. She once worked as a flight attendant in Dubai.)

As for an afterlife…well, either something happens or nothing happens, I haven’t decided yet. Either way, it’ll probably be alright. I’d prefer something, myself. Maybe a beach and a bowl of ice cream. If there is one guy watching over everything, I surely doubt he’d send anybody to hell after seeing the kind of suffering that happens down here during life.

B. works at a medical office, but when she heard about her friend’s son in Boston, she left right away. She didn’t even talk to her boss. She left a message on the machine. She had an emergency and she’d be back in a week. She bought a ticket on a twin propeller aeroplane to Boston and high-tailed it out of Canada.

“I’m coming!” She said.

And she told me this:

“Do you know that smell, right after it rains?” She said.

“Yes.” I answered.

“That’s what God smells like.”

See, we had to get a fifth bass player because the one we had, for various reasons, mostly relating to the U.S. justice system, was not allowed in Canada. Apparently, the guards at the border were so emphatic about this that they forbade him from ever stepping foot inside Canada. E-V-E-R. It took them 3 hours to say this. I know because I had to sit outside on the bus for those 3 hours.

Not being allowed in Canada makes it difficult to perform in Canada, so we had to get another bass player. We had a short rehearsal in the afternoon and played what ended up being a very nice show last night.

Yesterday was a significant day, not because I broke in another new bass player, but because January 9th was the day of my last chemotherapy treatment last year. It was my anniversary of sorts.

A lot of cancer survivors celebrate their diagnosis date, but I think that’s lousy. That was without exception, the absolute worst day of my life, why do I want to celebrate it? That was really the day that the whole mess started. That day wasn’t full of hope and relief and imagination – not, at least, like January 9th was.

I couldn’t much celebrate it last year, though. It was my 12th treatment, after all, and I didn’t feel much like celebrating that. I didn’t feel much like doing anything, from what I remember.

If I’d known back then that a year later I’d be the conductor on a North American broadway tour, that I’d be touring Canada (albeit in January…) – basically, that things would be going very well just one year later, it might have made it easier to get through the whole chemo experience.

I celebrated January 9th with the musicians, cast and crew. We celebrated at a little basement pub in Kitchener, Ontario after giving that very nice performance I talked about earlier.

Celebrating lately seems always to include some degree of self-destruction, by which I mean to say: shots of alcohol. So, perhaps fittingly, I awoke this morning feeling not unlike how I felt this time last year, by which I mean to say: awful.

It was too bad, really, that bass player #4 couldn’t have joined us for the festivities. I would have enjoyed #2 and #3, too. #5 was there, though, so at least the bass players had a representative. I would have liked to have a few other people there – the people that helped me through last January 9th. But I was glad to be with this new family, this cast and crew I live with now. Even if they were the ones responsible for acquisitioning those little glasses of self-destruction.

I saw my doctor on Friday. He and the results said I was clean and free of cancer. I’ve got nothing growing in me or on me that’s not supposed to be growing in me or on me. They say I am unremarkable.

How great is that?

I’ll be flying to NYC at the end of the month for a few rehearsals, then taking off to Taiwan for 2 weeks and 9 shows.

As I’ve found to be typical of international gigs, I have very little knowledge of any details of the job, other than I will be in Taiwan, and I will be playing music.

I do know that it will be a Broadway review with half-a-dozen singers and a pit. I think it’ll be a musicians-on-stage, singers-at-a-microphone kind of show. But I don’t know.

So…I’d call this a pretty positive improvement over last year. October 3rd of last year I was heading in for my 5th chemo treatment. This year I’ll be having a day off in some place called Hua-Lien, blowing all my salary on cheap electronics and hoping I make it back to the tour bus on time.

So I rode my bike up to a park near the river today, where I knew no one would be, and I talked to the first cloud I saw. I thought that maybe the cloud might be Shirley.

I told Shirley that I was sorry that she died. Well – no – not that I was sorry that she died. One of the first things Shirley told me was that she prayed to die. So I don’t wish that she lived any longer than she did. I am sorry that she had to live like she did for the last years of her life. I’m sorry I didn’t visit her before she died. I’m sorry I stopped thinking about her. I’m sorry I left her in her suffering as soon as I was done with mine. That I felt I had to ignore her suffering in order to forget about mine. I’m sorry about how she had to die.

I met Shirley a little less than a year ago in the chemo room. I don’t mean to go into a long description of Shirley, but I will say that I half expect her obituary to say that she was born a princess of some far-off, beautiful nation, and that she gave it up to come to the States and have lung cancer so that she could be here to cheer me up when I came to treatments. She would tell me she loved me every time I saw her. She would always be hooked up to a machine, no matter what day it was, and she’d always ask how I felt.

I remember Shirley once talked about how she wanted her funeral to be one big party. That we should prop her body up in the coffin and I’d play piano and we’d all dance around like it was New Year’s Eve and she was Times Square. And that nobody would be sad. I told her I’d play, but that I ain’t propping nobody’s body up in no coffin. And now I see that I’ll also be sad at her funeral. So I guess her funeral will be nothing like she wanted it to be.

Shirley had already been in chemo for months, probably months and months, by the time I got there. She’s already been through plenty of suffering. And I believe she’d worked in a hospital for most of her life, if I remember correctly. Either way, she could recognize a scared, anxious kid when she saw one. I’d bet that’s why she started talking to me in the first place.

She always seemed so much more in control of herself than I felt. She was always so straight-forward about her pain, and her emotions. She survived it so much better than me. It seems strange that she’s died and I’m the one people call a survivor. How can that be?

My nurse wrote me on Friday to tell me that she’d gone into the hospital and that things didn’t look good. She thought Shirley would like me to know. I meant to go see her, but I never learned her last name and I didn’t know how I’d find her. I guess I probably could have found her. And yesterday I got caught up with a million less important things. I called today and as how she was. She died this morning. Her body just shut down. I wish I’d gone to see her. I wish I had done that.

But the nurses say she had already started to go by the weekend, and I think they mean for that to make me feel better, which is nice of them. But I still wish I’d gone. If she wasn’t lucid, then maybe more for me than for her. I miss my friend Shirley. But these are the sorts of things you realize too late sometimes.

Whatever happens when we die, if we turn into clouds, or stars, or angels…whatever it is, Shirley will know her way around it by the time I get there. She’ll recognize the scared little kid that’s new to the place and maybe she’ll cheer me up again. It’s a nice thought.

To celebrate I did a few things. I released my album, that I was recording during chemo. I also edited and bundled up the meaty parts of this blog and released it as an eBook. And third, I rode 50 miles on my bike. In the land of cycling, I understand that’s called a half century.

Busy day, really.

I must be honest, though, it does feel a little weird to be selling stuff that came about because I had cancer. I don’t know what it is that bothers me. Capitalism. Opportunism. Something.

I guess the reason it feels weird is because I didn’t make these things to sell them. I mean, I wasn’t writing this blog with the idea that one day I’d make some money off of it. I wrote in this blog because I had to write in this blog. Same with the songs I recorded. I had to get stuff out.

And to come now and package this stuff up and put a price tag on it, and write succinct little marketing blurbs about it…well, it seems so…tacky is maybe the word.

But it occured to me that as an artist, or as a writer, or as a creative person in general – the stuff that came out of me during this terrible, cancerous time might possibly be the best stuff that’s ever come out of me. I always knew that I could write, if only I had something to write about. And I’m a good musician, but sometimes I lack inspiration.

I decided that this blog, and that album – they have value. So I’ve decided to sell them here on the site. I realize that I have conflicting ideas about it, but I think it’s a good idea. To put a price on something also shows others that it has a worth, and I’m ok with that.

These goods do have some tangible qualities to them as well. A married couple I know were just diagnosed – both of them in the same week – so I’m planning on sending a copy of the album and maybe a copy of the eBook to them. It might help them. When I was diagnosed I read all kinds of books about the experience of cancer, and it helped me.

Last week. When I biked 20 miles in the rain.

In fact, I’ve been counting, and in the past 2 weeks I’ve biking over 200 miles total. Not bad for a rookie.

I don’t mean to make generalizations too quickly, nor do I wish to foretell the future of my varied interests, but I’m hoping that this interest in biking sticks around.

The reason I’m biking now has everything to do with cancer, really. See, when I got through my surgery, my chemo, my everything else – when I was done – I didn’t feel like I’d beaten cancer. By the end of all that mess I really felt like cancer had beaten me. I didn’t feel inspired, or thankful, or anything that I expected I might feel.

But flying down that path today, heading into the 30th mile with the wind at my back, briefly leading the pack of riders and ignoring the rain pouring down – I felt that, yes, now – now – I’ve beaten cancer.

Which is not the right thing to say in a room where they conduct chemotherapy, which is why it was followed by such an uncomfortable silence. I jumped on the silence as quickly as I could, adding -

“The place is empty. Everyone go home already?”

The nurses, probably thankful for my quick attempt to recover from the first comment, hastened to speed the conversation along. This was most people’s off week for their chemo, so, yes, there weren’t too many people in today. (I notice they never call us “patients”, except when they are talking on the phone.) They planned to get slammed next week. I thought that made it sound like a popular restaurant. Which it is not. Popular, that is.

I was in for another port flush. Which I must have subconsciously put off for as long as possible. They tell me to come in every 4 weeks, but they aren’t too picky about it. So when I’d gone almost 7 weeks without one, they hadn’t really noticed.

They did the normal ritual of flushing the port, etc., etc.

My nurse was sunburned, which we all thought was ironic – an oncology nurse looking like Miss Melanoma. But she’s not the one with cancer, we are, so let her smoke, and drink, and breath asbestos, and accidentally fall asleep in the sun if she wants to. Although, after all she’s seen, I don’t think she’d want to.

I saw on my calendar the other day that I’m quickly coming up on the 1 year anniversary of my diagnosis. July 26th. Or 27th. I guess the official phone call came on the 27th, but my heart sank with the first call on the 26th, when the words “lymphoma” and “oncologist” were first used.

I’m sure this’ll sound trite, but, boy, it seems like longer ago that just a year. 12 months. 6 spent in chemo and 6 spent recovering. Or spent forgetting. Or spent doing both.

They’ve been a few times that I’ve mentally stepped back, usually when I’m doing something that really makes me happy, and thought, “I would be dead right now.” And I would be. It’s an interesting thought. It doesn’t last very long, because the thought is a little overly-dramatic. There’s any number of ways or reasons why any one of us could have died by now. So why dwell on it.

Because I know it. Sure, we could die any minute, but we don’t know it. It’s all a big mystery. But not for cancer survivors, we know we got a second chance.

And you see, this is exactly why I’ve rarely been writing here lately. There’s so little left to write now that every entry inevitably ends up being some half-concocted, overly-dramatic general philosophy on mortality. How boring. Wasn’t it so much interested when I had things to talk about? Drugs, and side-effects, and characters, and the journey?

Well, forget cancer for a minute. Let me tell you what I do these days, a year later.

I’ve taken to biking. Like most other hobbies I have at one point become interested in (piano, guitar, camping, backpacking, speaking German, starting a record label, making websites), I’ve allowed it to take over my life. This is how I do things. I get interested in something, make a decision that I going to try it, and I don’t think about anything else for months. It’s a shame I’ve never taken up the hobby of “making money” or “feeding the hungry”, as I’m sure I could make a difference in the world if I could just get as interested in the world’s hungry as I once was about playing Sonic the Hedgehog (it, just that one game, consumed an entire summer when I was 14. And I consider video games to be a horrendous waste of time, and did then. Incidentally, I never got past level 4. The whole summer. Anyway…).

So, biking. I started with the problem that I didn’t have a bike, or much of a bike. My good friend Zach had given me his old bike, which he was going to otherwise donate to his garbage can, and that’s been with me for awhile. It’s sort of (we’re not in the chemo room, are we?) dead, though, if you’ll excuse the phraseology.

Another friend heard I was looking for a bike, and gave me an old 10-speed he had in his garage. A green one. From maybe 1987. Beautiful thing, though it inexplicably pulls to the left no matter how hard to furrow your brows at it. My brother gave me his old bike, also dead, but also rusted out from siting in the elements (and, judging from the dust, a great deal of concrete drilling) for the past 3 years. My brother claims that it is a green bike, although I can’t confirm that until I dip it in a vat of acid to get all the shit off of it. (Again, you’ll need to excuse my phraseology.

But if you think I might be defeated by the three dead bikes in the shed, or the fact that I don’t know how to use a wrench, or where to get one, etc., etc., etc., you would be wrong. You have either forgotten that part about “consuming my life” I mentioned earlier, or you falsely concluded that I was exaggerating.

I rode 87 miles this last week. In 4 separate rides. 8 miles + 16 miles + 39 miles + 24 miles. I don’t mess around when I get something in my head. I’ve lost 9 lbs. I decided that I would learn how to use a wrench, take the wheels off one bike and put then on the other. Which required the I also take the brakes off one and put them on the other…and the axle off one and on the other…

And, I almost forgot, awhile back I took my parent’s two dead bikes, stripped them of anything useful, and put it onto my bike.

The result is the ugliest, heaviest, oddest, Frankenstein-like bike you’ll ever see. And that’s what I ride.

It’s just unfortunate that I keep finding hobbies that require some sort of upfront cost. To backpack you gotta get a…duh…backpack. Not to mention you have to go somewhere WITH the backpack once you get it. Camping’s no better. You couldn’t imagine all the expensive things that are absolutely REQUIRED in order to rough it.

And now biking. A new road bike is a minimum investment of $600, if you want to do it right. Sure, you could go to Target and get a $70 Schwinn, but that would be more indicative of a “reasonable interest” in biking, not an “insane obsession”, which is what I’m referring to here.

I guess I’ve always liked biking. I used to go biking with my buddies when I was younger. But then there was that unfortunate accident that left half my face on the pavement. And then the unforgettable week or two in college when one pedal fell off and I become “Johnny One Pedal” until I saved enough money to fix it (seriously, have you ever ridden a bike with one pedal? It’s like trying to doggy paddle fast enough to water ski. Try going up a hill!)

So, while I am determined to bike, I’m also, apparently, determined to make it hard as possible by building a tank with which to do it. Because I put the gears and tires of one bike on another, I now have too few gears on the back end of my Frankenstein Bike. Long story short, I need to pay very close attention to how far down I shift. If I go too far, the derailler will de-rail the chain right off the gears, get stuck in the back tire, which will stop immediately, along with the rest of the bike – and maybe I’ll be able to donate the other half of my face to the pavement. It requires a lot of concentration to ride the thing.