My cancer year

This post is going to be a little different. It’s a quite personal one. However, I’ve been waiting a year to write it and I can’t stand waiting any longer, so here goes.

Some things are life changing. Some things are life affirming. I’ve been in the midst of a challenge that falls squarely into the second category. About one year ago to the day I was diagnosed with cancer–rectal cancer more specifically.

The actual diagnosis wasn’t so much as a surprise as it is for some. I was in growing pain and I knew something was up. All the regular things didn’t get rid of the pain so by process of elimination I was expecting which path I was on.

I’ve spent the last year involved in various procedures and protocols to work through this cancer thing. I’ll cut to the chase–so far so good. There’s no sign of cancer–at least in terms of my last CT/PET scan, but I have many tests and years to go before I can declare that the cancer is in remission.

First, I want to thank everyone that’s been sending kind thoughts my way. You have no idea how much it’s meant to me. It’s weird, some of my oldest and best friends kind of disappeared over the last year and others I hadn’t seen in years came from a far to spend an afternoon with me and give me a boost. The mix has been most interesting. I can imagine it’s hard to know what to say or do. Anyway, thanks again to Marc Orchant, Rob Bushway, Warner Crocker, Unni, and tons of other friends that have patiently listened to my little trials and tribulations. It’s been one of my deepest lessons this year.

There’s actually a couple parts to finding out that you have cancer. There’s the word from the pathologist, but this is just the beginning. Next the cancer has to be characterised. What stage is it? Where is it located? How much has it spread, if any?

For me, this was the nerve wracking part of the process. It seemed to take forever and all I wanted to do was get going and get rid of this thing inside me.

Eventually all the calendars aligned between the various doctors involved: the surgeon, the medical oncologist, the radiation oncologist. That took the better part of a month and a half–in large part because I hit the holidays.

So when my treatment began, I was ready.

The Drs didn’t all agree on the exact characterization of the cancer–it was somewhere between a late Stage 2 and Stage 3 with a possible involvement in one lymph node–although that was in debate too because of its position.

Anyway, Stage 3 was scary–so I thought of it instead as Stage 2+. My own scale. Stage 2 was treatable it seemed from the numbers. Stage 3 was OK with me though, if that’s what was to happen. An eventual surgery would settle the point I knew.

What was the first step? 28 days of daily radiation and 10 days of overlapping chemo—5 the first week and 5 the last week of radiation. It didn’t sound that bad. I could take 28 days of whatever.

So it began. I went through chemo training and radiation training where they give you a good idea of the side-effects that are possible. Everyone is different, they say, so it’s like the lottery, you don’t know what the outcome is until you get there.

The goal of the radiation and chemo is to reduce the size of the tumor. Mine was a bit bigger than 4 cm.  Sometimes the combo can shrink the tumor by half–simplifying the surgery–sometimes it disappears completely.

I fell into the later group. In fact, after the first week of treatment I could tell something was happening. All the pain was gone. I attributed it to the tumor shrinking. The Drs were more passive in judgement.

I won’t go into the details here of what radiation and chemo were like, but if anyone is interested, please email me. I’m more than willing to share.

Anyway, after radiation/chemo I took some time to prepare for surgery. That went very well–since the pathologist couldn’t find any bad cells. I was elated. For me, this kept the surgery small, but nonetheless it took about 2 months to recover. I’m amazed at others I’ve met online that breezed through bigger surgeries in less time. Oh well. Every one’s different.

I still wasn’t done though. Because of the initial diagnosis and heaps of caution, we all decided that I should go through a follow-up round of chemo–four months if it: 3 days every other week, 24hrs a day.

I psyched myself up and got ready for the final round of chemo. I take Oxiliplatin on Mondays, then get a chemo drug called 5FU via a pump that I wear through Wednesday. There’s also a supplement called Leucavorin that’s in the mix, that for some reason makes the chemo work better.

At the beginning they told me some people breeze right through the therapy. I limped along. Each cycle I’d become extremely tired, lose a bunch of weight and then work to get it back the following week in preparation for more chemo.

One thing that happens with chemo treatments like this is that you learn you aren’t alone. There are others going through the same thing in the same room. You get to know them. You see how some stumble from day one. Some it’s like nothing. I’ve been somewhere in the middle.

My fingers and toes tingle–like I’ve been in the cold too long–my appetite is shot, most things taste like metallic or dirt, my short term memory is a joke (though for some reason I can program just fine), and nausea sets in if I don’t take a handful of pills. Oh, and even the thought of some foods I’d survived on during chemo I can’t stand. Just the thought of them starts me gagging. I know it’s all in my head, but it’s the most curious thing. Please if you see me, don’t say “white bread” or “crackers and peanut butter” and a handful of others that I better not spread the word on 🙂

I did take two weeks off at one point. I was just too exhausted. But there was no fight from the doctor. You have to do what you have to do. No way was I going to wind up in the hospital.

I have my final 3-day chemo cycle next week. I can’t wait. The last day will be one year to the day since I found out I had cancer. What a journey! 

Word is that it’s going to take awhile for the drug side-effects to wear off, but I don’t care. I’ve made it this far and anything else is just a step along the way. One step here. One step there.

So if you’ve been wondering why I haven’t been my old productive self for awhile, now you know. I’ve been a bit preoccupied.

I’m slowly getting back into the groove, but it is taking me some time. I just am so thankful to have gotten to this point. Thanks everyone. Thanks to my family. Thanks to Montel Williams and his promotion of PPARX.org which helped me cover the cost of the most expensive of the chemo drugs I’ve been taking–$5000/dose retail. It’s helped tremendously. In fact, the financial end of handling a disease such as cancer, probably deserves a whole post in itself. Thanks for all the IMs, the calls,  the visits, the emails. It’s meant tons. I hope soon I can begin passing forward the kindness.

For now, though, I’m done–or should I say a few days from being done. Can’t wait. Whooohooo!