My Diagnosis Story – Hodgkins Lymphoma Stage 3B

It’s been exactly 105 days since my diagnosis of cancer. That’s 3 1/2 months or 14 weeks, 2,520 hours, or 7 chemotherapy treatments – however you want to think of it. After my next chemo treatment it’ll finally be time for another PET/CT scan and we can finally see if all this crap has done any good. I thought this might be a good time to recap, especially since I seem to be forgetting certain things about the past year.

I started going to the doctor sometime in April. I had had a cough for too long, and I was getting dizzy all the time. I suspected anemia, but the iron pills I’d been taking like candy didn’t seem to be making any difference. I had lost 25 pounds from what I thought was clean living and good eating (neither of which, I realize now, I was doing). Turns out I was on the ‘Get Sick and Die’ diet, but it would be awhile before the doctors told me that.

The first doctor I went to was the cheapest doc-in-a-box that I could find. I had catastrophic health insurance for emergencies only, and it wouldn’t pay anything for doctor’s visits, or medicine or procedures, or anything like that. It cost me $35 a month, and unless I got my legs ripped off, I didn’t think it would kick in. This is probably the main reason I waited so long to see a doctor in the first place, I had no idea how I would ever pay for whatever was wrong with me.

That doc wanted to do a colonoscopy, but I’d have none of that. It would be thousands of dollars for the procedure, and I wanted to rule out other things first. Namely, I suspected parasites. Yes, it sounds stupid now, but cancer sounded stupid then. I had returned not long before from traveling 6 months abroad, and I thought that maybe I’d picked up some bug. I mean, what Italians call “laying on the beach” is what we Americans call “laying in the dirt,” and if that didn’t kill you, whatever that was that I ate in Tunisia would probably be a prime suspect.

And before that, there were countless opportunities to pick something up. I remember sleeping on the beach in Hawaii (also called “sleeping in the dirt”), getting the flu in Fiji, and getting sick off bad sushi in Norway. I’d spent 6 years eating the cheapest food I could find in the craziest locations I could get to – if anyone was going to have hookworm, it’d be me.

I was obsessed by this point. I probably don’t need to tell you, since most of you probably have a good deal of experience dealing with “men,” but I waited until I was really, really sick to see the doctor. I would get up in the morning and go lay down, I was that sick. The minute I walked into a room I’d look for where I could sit down, I’d have to cut off conversations mid-sentence because I couldn’t stand any longer. I had a writing job at the time, but I could only eek out 3 or 4 hours of work before I’d want to collapse. People began to recognize me from a distance by my cough, they could tell I’d entered the building by my signature hacking.

I can’t lie to you, I thought maybe I was dying. I didn’t know what dying felt like, but if I had to imagine, I would have imagined that it would have felt a lot like that – I remember thinking that at the time. I felt like I was disappearing. I remember a few long nights just before diagnosis, where I’d stare up at the ceiling and worry about death, and think about who I’d want to talk to, or apologize to, or yell at, before meeting the pearly gates.

I convinced the next doctor I went to that I had malaria. There’s one particular strain of malaria that sits in your liver and brain for years before coming out and making a mess. I was convinced that I had it. The only problem was that there was virtually no way that was possible. Unless my body had secretly traveled without me to the Philippines or Indonesia, I hadn’t been any place that I could have picked it up. But desperation is a poor logician, and I was totally convinced.

Well, not totally. But I was really hoping that I would have malaria. I mean, I was really pulling for that malaria test to come back positive – I wanted malaria like a little boy wants a new bicycle on Christmas. If I had malaria I could take the drugs and be cured in 10 days. That sounded great. But the test came back negative. I was really starting to worry.

I was sent to two more docs at this point, a hematologist and a gastroenterologist. Anemia and weight loss following prolonged travel – it sounded a lot like a parasite to them. They thought it might be something called “Whipple’s Disease,” which is fairly uncommon (but I’m a fairly uncommon kind of guy).

Again I was totally convinced. Whipple’s disease! Yeah! Whipple’s disease sounds great! The cure involves 12 months of intense antibiotics. Well, whatever, 12 months is fine. At least it’s not something that I’d die from. I was kind of excited about getting a traveler’s disease – something to prove that I was really a SERIOUS traveler. Every serious traveler’s got to have some sordid story about illness. Something that ends with, “and then I slept for 10 days at a convent in Bangladesh. The nuns had to tie me to the bed for the first 48 hours, but they made the best curry I’ve ever had.” Something like that.

The doc ordered a CAT scan of my abdomen to look for abnormalities in my intestines. I was scheduled for an endoscopy a few days later, but it never came to that.

The doctor called on Monday, the 25th at 9:30am, the day before the endoscopy. He said that he was canceling the endoscopy, that I’d have to go see my oncologist. My what? My oncolo-what? You mean my hematologist, right?

He said that they had found something disturbing in the cat scan. They couldn’t make it out completely, but there was some kind of large mass in my upper abdomen that disappeared into my chest, and my spleen was inexplicably oversized. He said that I’d have to go in immediately for another cat scan of my chest.

Large mass? What does that mean? Is it not suppose to be there?

He said that it could be any number of things, that I shouldn’t worry. The oncologist (there’s that word again) would call tomorrow and I could talk to him about it. Other than that he couldn’t tell me anything.

Man, I could have really gone for some malaria right then.

The next morning the oncologist called. I remember waking up to my Mom frantically waving for my to get on the phone. I don’t remember what he said, it’s all fuzzy to me now. I remember I was looking in mirror when it said whatever he said, and I remember watching my own face drain to white, and everything getting a little slow for a minute.

When you’re my age, and somebody says the word cancer, you hear the word death. Death is like cancer’s shadow — it’s not cancer itself, but it’s always there with it. I thought about the little Castillo girl that died of leukemia when I was in second grade, and I thought about the time when our class walked over to her house in the middle of winter to stand in her living room and sing “Jingle Bells.” And I remember that we didn’t see her that day because her room was upstairs, and she was too sick to leave her bed. And she died soon after. The teacher had been really upset about it, but I didn’t understand it at the time.

My friend Justin was the first person I told, outside of the family. And this is only because he was unlucky enough to call me right afterwards, and I was dumb enough to think I’d be ok answering the phone. That phone call didn’t go well. There were other phone calls after that, the first ones were really hard to get through.

I’ve had bad days in my life, like anybody. But that was definitely the worst day of my life. Nothing could ever compare to the length of that day, to the hopelessness of those hours.

I had this e-mail that I’d been pecking at for weeks. I started writing it when I thought I had malaria, and when the test came back positive, I was going to send it out to let everyone know what was up. Then I had to edit it to Whipple’s Disease, and I was waiting for those tests. But now? How do you send a mass e-mail about something like this? “Hi everybody, Sorry for the mass e-mail but I’ve got a new e-mail address and a huge mass in my chest. I have cancer and I don’t know if I’ll live. Hope you’re all well! Dave.” But I wanted to let friends know, and I couldn’t take anymore phones calls like the ones I’d just had. I wrote a new e-mail, and I later put it up as the first post in this blog (click here).

Then things were just crazy. The next day we met with the pulmonologist, who sent us to the cardiac surgeon, who scheduled surgery for the next day. They would also be inserting a catheter into one of my chest veins for the chemotherapy.

Chemotherapy? Oh shit.

I had the biopsy on a Thursday, and I played my gig on Friday. I was in terrible shape, but I played really well that night. I remember coming into the green room on that Friday before the show, weak and in pain. I couldn’t take the pain killers because I needed to be sharp for the show. I walked in, sat down, and before Dr. Slawson could even get “How are you?” out, I was crying like a baby. Imagine his surprise. Hell, imagine my surprise, it was like my tear ducts just exploded on their own. I pulled it together, though, I was determined to play that damn show. I decided very early on that my life would not be defined by cancer, and neither would I surrender to it. It was really important to me to play that gig. Now, in the future, if I feel like calling in sick to work, I’ll think about the time I woke up from cardiac surgery and played a two hour gig in a tuxedo.

After the diagnosis my family freaked, like any good family would. And my friends flipped, like good friends do. And I had some phone calls that I wasn’t quite ready to have and I did a lot of crying.

I made about 30 phone calls to sperm banks in the greater Chicago area. Oh yes, sperm banks. The thing about chemotherapy is that it kills your boys. Temporarily, hopefully, but you never know, so you gotta send some to the big freezer to make sure that there’s a chance for little Dave’s and Davette’s to be running around driving me nuts one day.

Every one I called, though, (and these are SPERM BANKS I’m talking about) acted like I was a lunatic. “Oh..no…sir…we don’t do that.” What does a sperm bank do besides bank sperm? I called urologists, sperm banks – anybody I could find. It was Wednesday and I was starting chemo on Monday, this had to get done.

Without going into detail, let’s just say the University of Chicago Andrology Department is a very uncomfortable place with a lot of very melancholy, desperate people in the waiting room. And I hope it was totally unnecessary. One day it’ll be funny. I’ll tell you the story then.

After a few more diagnostic tests – blood tests, a PET scan, etc., it was determined that I had stage IIIB cancer. There are only 4 stages, and the B means I had symptoms. More symptoms than I realized, actually. Once the doctor asked if I had night sweats, of course I said no. He looked at me and asked, “do you wake up in the morning damp?” Ok, now the answer to THAT was yes. Does that mean… Oh, yes, I guess I do have night sweats. Duh.

We also found out that my “large mass,” what they were now calling a “malignant tumor,” was – to use another word the doctors used – “huge.” This thing was massive, and was wedged between my spine and my heart. It was as round as my heart, but it extended farther down. It is amazing to me that I had a thing this size in the middle of my chest and I was still alive. No wonder I had a cough. It would be considered inoperable, if it needed to be operated on. But as it turns out, Hodgkin’s Lymphoma is one of the only cancers that responds to chemotherapy really well. So these days nobody takes out the tumors, the chemo should just melt them away.

I started ABVD chemotherapy on August 8th, 2005. I started this blog around that time as well, so you can probably pick up from there. The first 5 treatments weren’t really that bad, but now they’ve really started to hit me. This past time they sedated me during treatment because, I don’t know, I guess I started freaking out a little.

It was so easy to have a good attitude about this at the beginning. It was so easy to be strong, and to jump into the chemo room every other Monday and say “bring it on.” It was easy to write about, and to sing songs about, and to blog about, it was so easy to make jokes about it – but now it’s not so easy. It’s no fun now. I just sit around the house all day.

I mean, I’ll be fine, there’s no doubt that I will kick this thing and I’ll be a cancer survivor. If I know myself at all, I know that when I’m done I’ll be bragging to everybody I meet, but right now it doesn’t really seem like something to brag about. It just seems like a slow, stupid, foul-tasting mess that I have to sit in, and I can’t wait for it to be done.

My sense of humor, as well as my ability for fluid thought, comes and goes as treatment gets harder, so I seem to have less and less to write about here in the blog. But it still helps me to deal with everything. Forgive me if I don’t update it as regularly as I did a few months ago. I’ll have plenty to write about when my mind gets back in order. I’m just going to hold my breath and get through to the other side of this as quickly as I can.

There should be new PET/CT scan results in within a few weeks. Those results will be really important. I’ll post them as soon as I get them.