Under the knife
Warning: Long message ahead. This is posted in a few places and being e-mailed to a bunch of people, so if it seems a little impersonal, that’s why, and sorry.
This is just a heads up about what’s going on with my health, so that I don’t have to have separate conversations with however many people are interested and inevitably forget who I’ve talked to or forget to mention certain details.
Last year, my friend Rob died, and to this day, I’m not sure what took him. I have no intention of dying any time soon; I intend to pee on the graves of my enemies, and they all have the bad manners to not have died yet, so I’m not going anywhere, but I don’t want anyone to be caught by surprise later on, just in case.
About two months ago now, I went to bed on a Sunday just fine. The next day I woke up with serious pain in my heels, to the point that I couldn’t walk comfortably. I thought I’d just slept wrong and pulled some tendons. It was worse the next day, and I looked it up online, and thought I had heel spurs (basically, really badly pulled tendons). Then it spread to my knees, ankles, elbows and wrists, with swelling so bad that it was difficult to put on my shoes. I also began having reddish bruises (which later turned out to be internal bleeding) appearing on my inner heels and later atop my feet and along my shins. I also began to have serious fatigue and a dramatic loss of appetite. Later, a persistent cough developed, along with a dramatic cycle where I would go from chills that would cause near-convulsions to a fever state where I was so hot that sweat literally poured off me in sheets.
I went to my local doctor, and they began to try and puzzle out what was going on. I was tested (and cleared) for lupus, HIV, Lyme Disease, gout and at least a dozen other things, including a whole host of STDs the nurse seemed to really want me to have in an advanced state. Eventually, they decided it was some infection that had “settled into” my joints and was causing this swelling. I was told frankly that we might never know what infection it was, but it would be treated with antibiotics.
The antibiotics worked, but just like when you take your car to the shop because your exhaust system needs work to pass the smog test and they find the transmission’s shot, other stuff was found. Specifically, when they sent me in for a chest x-ray to rule out mononucleosis, they spotted some shadows that worried them.
So, having already had an EKG (which felt very much like I was about to be tortured by a Cold War era South American death squad that was going to hook the electrodes up to a car battery), I had to have an even more unpleasant test, a CAT scan, complete with barium smoothies. Imagine the most vile drink you’ve ever had, and add a little strawberry flavoring to it. Now be told you have to get it down in 10 minutes, and then you get half of another one (with banana flavoring) and THEN you get an IV with yet more dye to go into your body. The CAT scan itself is somewhat uncomfortable in that you’re wearing a paper gown (with your pants pulled down, because apparently the scanning of the goodies is an important part of the process), and holding your breath when a mechanical voice tells you to.
The CAT scan scared them even more. At this point, I was at home, working half a day, but mostly sleeping the sleep of the very feverish and barely mobile (one day, my wife had to help me get in and out of the shower, since I couldn’t even move my swollen knee and hips on my own). The nurse told me that they thought I had lymphoma, cancer of the lymph nodes. (I’m 36, if anyone is wondering.)
Next week sometime – depending on when Blue Cross and the chest surgeon work it out – I will be going in for surgery. The doctor – who is an open heart surgeon who describes this procedure as extremely routine, and one he’s done “hundreds” of times – will both be eyeballing my swollen nodes and bringing back samples to biopsy. There are dozens of versions of lymphoma, and while many treatments are available, they need an idea of what they’re working with before beginning treatment.
The operation will go in three stages, stopping when the lab techs say they’ve got a good sample for biopsy. I will be knocked out the whole time. The first step will be sending a camera down my trachea into my lungs and taking a look at how my lymph nodes are pressing into them. The reason I have a persistent cough is that my lymph nodes have expanded to the size of thumbs inside my chest, pressing against the side of my lungs, irritating them. My lungs interpret this as mucus or something stuck inside, so I have a lot of futile coughing fits.
It’s unlikely that this will give enough information for the biopsy (since no samples will be collected), so the next step is to cut a small hole in my neck, at the notch where your collar bones meet. Apparently, there’s some sort of shaft in front of your trachea that leads down to your organs. A camera along with a cutting tool will go down, and they will be retrieving one of the super size lymph nodes and bringing it back up for the lab guys to slice up and stick under the microscope. I’m hoping #2 is as far as they need to go. Lord knows there’s a huge amount of material in this lymph node – it looks about as big as the aorta that lead in and out of the heart as the major highways for blood in the body – so hopefully it’ll give them useful information.
If not, they’ll go with option #3, which is to flip my unconscious body onto my left side, cut a hole between my ribs, deflate my right lung, and go in through the empty cavity to grab lymph nodes on this side of my body. They’ll then reinflate my lung, patch me back up, and get to biopsying.
About lymphoma: First off, it’s not impossible that my lymph nodes are swollen from something else, including the mystery infection. The standard medical protocol is to assume lymphoma, since it’s the most common, along with it being a progressive fatal disease if left untreated.
There are oodles of versions of lymphoma. At my age, the oncologist (I have all sorts of specialists in my life now, which is not nearly as cool as you might think) says it’s probably a flavor of Hodgkin’s Disease, which is a good thing. The survival rate of Hodgkin’s at my age is above 75 percent. And yes, that’s still a pretty high rate of not surviving, but not surviving does not mean I’ll be punching out any time soon – it could be months, it could be years. We need the biopsy to know. (I do get to check out of the debate about Social Security, though, so that’s an upside.)
Other than the fatigue, the coughing (which I can go days without having it spring up) and a lingering amount of stiffness that I treat with Advil (an anti-inflammatory, who knew?), my quality of life is still pretty high, so no one start measuring me for a coffin just yet.
I don’t tell you this to make you panic or get all weepy. I have the weepy stuff covered with certain family members, bless them. It’s also not time to panic: Lymphoma is one of the most curable cancers, and it’s also a cancer that sheds light on treating other cancers, so there’s a lot of research money being poured into it, meaning new possibilities are forever springing up. And, frankly, the scary stats you’ll find online about survival rates generally apply to much older people. If I were in my late teens, I would have a 95 percent survival rate. At my age, and my general good health – go figure, one side effect of all of this is that I know I’m doing pretty well, especially as the cancer is causing me to lose weight, which was my only real issue – I will almost certainly beat this.
I have two models for how I’m dealing with this. I’m freaking out my boss and, to a certain extent, my medical practitioners, by laughing my way through this. If there is a time to freak out, it will be later, and it will be very obvious.
My first model is a t-shirt that the father of a friend of mine used to wear. This was back when I lived on Army bases, and when I was in the fourth grade, my friend Toby’s dad was a Ranger, as I recall. He wore a t-shirt that was probably pretty scandalous for the mid-1970s. The shirt showed a beautifully rendered eagle sweeping down towards an outcropping of rock, talons out and ready to snatch up a mouse. The mouse, seen from the back, was drawn in a very cartoony style. A second, at best, from death, he stood defiant, arm outstretched, giving the eagle the finger. I’ve never been confused as to whether I was an eagle or a mouse in life, but that mouse has always stuck with me, and I’ve always been THAT mouse. If the eagle comes for me now, I will be eaten middle finger first.
My second model is my friend Kris. Kris, who is as pale as only a natural redhead can be, got a big old honking melanoma on her knee last year. Pale plus shorts plus outdoorsy will do that. There was every possibility that it had gotten into her kneecap and thus her marrow, which would take the melanoma from an ugly scar to fatal. Kris’ reaction was to laugh, and to use “The Cancer” as a way to guilt her husband into bringing her beer. This seems like a good plan. I figure I have a lifetime ahead of me of saying “oh, it’s too hard to take out the trash? You want hard? I HAD CANCER!” or “You think typing in obits is a burden, intern? CANCER IS A BURDEN!” Frankly, that seems like too good of a bit not to get to use, and it makes hanging in there worth it all by itself.
And, frankly, between the endless blood samples, the CAT scan, the barium smoothies, getting my goodies felt up by my oncologist under the pretext of checking for swollen nodes and glands and my upcoming surgeries, I’m too pissed off to let anything happen to me. I’ve got YEARS of griping to do about all of this, once I’m no longer falling asleep at 3 p.m. every day.
So, that’s the score. If I have a scary short haircut next time I see ya, you know why. Frankly, I think the problem was that I haven’t had any exciting adventures for a few years, and my body decided to come up with one of its own. I’m looking on it as an extreme character-building experience.