teaching cancer to cry

I had a bit of a disappointing day yesterday.

I went in and met my surgeon for a consult.  He, like all the other docs that Alberto has set me up with, is an outstanding guy.  I got a very very good feeling from him.  He had a young woman third year med student with him, which was a little strange.  To be lying there stark naked pulling my knees to my chest, feeling very small, with a wide eyed med student looking on, who frankly looked as though she felt more awkward than me.

The disappointment was mostly just in hearing exactly what I already knew, instead of some outrageous good news.

I was hoping that I would say to the doc, “Hey doc, Alberto says I can’t ride a bike..  it that true?  Is he just being over cautious?” and that he would say “Oh that’s just silly..  Go ahead and ride your bike.  Your happiness and sanity are of the utmost importance..  I’ll call Alberto and tell him myself”

This is not what happened, of course.  Instead, he said “no..  He’s right.  You really can’t.  And in fact, when the treatments start, it will be quite uncomfortable for you to even sit on a chair, let alone a bike saddle”

The other discouraging affirmation is one that I haven’t really addressed here, but is far more important, I guess.

The tumor is very very close to the anal verge (asshole).  Less then a centimeter.  It is standard in these cases to do a sphincter amputation.  This leaves you, of course, with a permanent colostomy.  This possibility has been looming from day one.  At first, because the GI doc who did the original colonoscopy was very vague about the tumor’s location in the report, this possibility seemed like just a vague thing to worry about.  Every step along the way it has become more apparent that it will be my new reality.  A glimmer of hope came with the ultrasound.  It indicated that the tumor was pretty shallow..  that it wasn’t penetrating into the muscular wall of the rectum, and that perhaps the radiation and chemotherapy would do enough to shrink it that…

The surgeon put those hopes more or less to rest.  He said that we couldn’t be sure until the treatments were done, but that he himself would go with the gold standard.

Oh well.  Plenty of people have permanent colostomies.

mon, july 14th – I didn’t eat in preparation for the colonoscopy.

tues, july 15th – Had the colonoscopy. They found a tumor and took a biopsy.

thurs, july 17th – I got the biopsy results (and a family history from my uncle that revealed all sorts of colon cancer). Went Immediately to see my oncologist.. from here forward, Alberto.

wed, july 23rd – Finally got approval from my insurance company for the petscan, followed by an appointment with Alberto, followed by an appointment with my radiation oncologist.

sun, july 27th – Didn’t eat again.

mon, july 28th – Endoscopic ultrasound.

wed, july 30th – Port placement surgery.

thurs, july 31st – Appointment with Alberto to discuss findings of the ultrasound, and improving insurance.

fri, aug 1st – Appointment at the sperm bank (in the empire state building.. I kid you not! The lab tech’s name is Romeo.. no joke.)

TODAY! tues, aug 5th – Pre-op consultation with my surgeon.

That brings us more or less up to date. There was some hustling to upgrade my insurance plan in there somewhere.. same day as the port placement, I think.

I called the sperm bank yesterday morning, and found out that I had enough (just one trip.. what a stud, huh?). So, all the lights are green. The chemo/radiation schedule has to start on a monday, though, so I get a bit of a reprieve here. I’ll begin on the 11th. It’s a six week schedule. Radiation daily (weekends off) for the whole duration. For two weeks of the six (1st and 5th maybe.. first and last?) I get chemo as well. Those two weeks will be pretty brutal. The chemo treatments will take 4 or 5 hours – just sitting in a chair with a chemo drip straight into the heart. They’ll happen at Alberto’s office. When I finish up there, I’ll go straight to mt. Sinnai for the radiation. It’ll be pretty hard to get anything ELSE done that week.

When the six weeks are over, I get a break. A period for my body to recover enough to be able to handle surgery. We’re planning to spend that time in Nova Scotia.

My oncologist is a long time friend of the family. He’s known me since I was about 4. He knew that the biopsy was happening, and Hill and I were in his office half an hour after getting the results. That could have gone pretty differently. I could have been faced with heading straight home to get on the computer and begin a search for an oncologist who could see me SOON and was covered by my insurance. I think that this probably did more to keep me level headed than any other single factor.

Of course there’s Hill. Hill walked into that little results meeting with me and sat down.

“Who’s this?”

“My girlfriend”

“can I speak in front of her?”

“of course.” (would I have invited her along if you couldn’t?)

“you have cancer.”

“ok.”

She has remained totally calm throughout. She sat with me and heard that I could end up sterile with a colostomy bag and didn’t flinch.

Most of the docs admitting me for procedures (petscan, port placement, endoscopic ultrasound, sperm banking, etc..) see the chart and say, “Cancer!? How did you find out?” I guess cancer’s rare enough in people my age and in my state of health, that it’s uncommon to go looking for it. Even knowing my family history*, one GI doc said that they wouldn’t have started screening me until I was closer to 40.

So. How did I find it..

I had been quietly suffering from some GI issues for several months. When it first cropped up, I just assumed it was constipation. I had the fairly constant feeling that I needed to go to the bathroom, but multiple trips were mostly unproductive, and certainly didn’t provide any sort of relief. What I’ve realized in retrospect is that what I was feeling was pain, not pressure. It occurs to me that deep visceral pain is pretty hard to put your finger on. Pain feels like pressure. The only thing that I’d ever felt like that was the need to go to the bathroom, which, when done, inevitably would relieve that pressure and take that sensation away. This clearly was different. (Since then I’ve discovered a pretty obvious method of treating these symptoms. Vitamin I. Daily supplement of ibuprofen.)

I guess I should pause here to point out that there’s nothing glamorous about colon cancer. For those of you who are easily grossed out, this may not be information that you really need.

Several months of this (with, if you can believe it, the increasing worry that I had cancer) finally prompted me to go and see a GP for the first time in what must have been about 10 or 12 years. I got a general check up, and discussed this issue. “You’re in perfect health. Your blood pressure is perfect, your cholesterol is perfect, your weight is perfect, you have no STDs, your heart sounds great, you don’t smoke, you eat well.. there’s nothing wrong with you.” (oh good! what a relief.. so can you explain this discomfort?) He decided that it was parasites, and did a stool kit. Naturally it came back clean. So he sent me for a round with the GI doc.

The GI doc had a similar reaction: “you’re in perfect health, etc. etc.” But he took the case history, and proceeded to a digital (that’s digital as in one of the five digits on your right hand with which you grab a beer) exam. He found blood and a lump. He ordered a colonoscopy, and a week later I was in his office with Hill being told I had cancer.

*I didn’t know until the morning that I went to get the biopsy results that I have a family history of colon cancer. My grandfather and his sister both died of it in their 50s. A cousin of theirs died at 48 from the same.

A couple weeks ago I was diagnosed with colorectal cancer. I’m young and very healthy otherwise, and it is pretty lucky that we even found it. I have been, frankly, overwhelmed by the show of support from both those very close and folks I’ve never even met. It has been an exhausting couple of weeks. Yesterday I heard from AT&T that I had gone over my plan by 1300 minutes this month (add it to the bill.. cancer turns out to be wildly expensive), and it occurred to me that starting a blog might be a great way to keep people up to date as things develop. My amazing friend megan ann (faster panda kill kill to you flickr folks) did the internet mojo to set me up. I’ll be using this as a daily of sorts; a place to collect information as it develops. Over the next few days I’ll try to post a bit of a back log of info for those of you who are interested in the technical nitty gritty.

I’d like to thank my friend Nick Moroder for coming up with the “fuck cancer, you’re ezra” mantra. T-shirts coming soon.