Why Can’t They All Be Slackers?

One of the really great nurses at my oncologist’s office called me Friday. She screwed everything up!

I have my scans every 3 months, because you know, all that radiation is great for preventing cancer. In September I wrote about an annoying little thing known as Scanxiety – that period before a scan when I’m a total whacko. It usually starts about the time they call me to tell me they’ve scheduled my scan. Generally it’s not more than a couple of weeks before which is nice because I get a little bit of a break from thinking about it.

This time? That overly efficient bitch called me 5 weeks before. So yeah, I get to start stressing now. I don’t want to. I don’t enjoy it. But there it is, gnawing at the back of my mind. It pops up when I’m not actively thinking about something, anything, else.

December 14th @ 10:00am I check in and get to drink contrast instead of coffee. It’s not a fitting substitute. Oddly, I relax afterwards even though it’s usually 4-7 days before I get the results. I guess at that point I figure the pictures are taken, what’s done is done.

Before then? I over analyze every pain. This weekend I actually questioned that I didn’t feel bad enough from the drugs. I should enjoy those days but noooo, I worried that I’m not as sensitive to it. That my body is developing resistance.  I was oddly relieved that I was sick last night.

Plain and simple, it fucks with my mind!!!! My last 2 surgeries were 7 months apart. It’s been 7.5 months since the last one. Yes, the last two scans have been great. I know it, I appreciate it, I’m thrilled by it. I’m afraid it won’t last.

This is a new drug. A statistic I read early on mentioned 5.9 months to resistance – to tumor growth. I’ve been on it 7. Obviously that number is weak. There are few of us taking this drug and those stats include the ones who get no response to it at all. It is not a big enough sample size to give it credibility.

My rational mind knows that. My post-diagnosis mind wonders why it hurts when I sleep on my right side.

It’ll be 5 years in February of living with this. That post is already brewing in my mind when I can’t sleep. It may include a warning and a picture of my primary tumor in the surgeon’s hand while it was still attached. I’ve always wanted to show it but it’s gross. 

I am part of a new breed of cancer patients. The one where cancer becomes a chronic illness. It’s not a matter of 12 rounds of chemo with an end in sight. It’s treatment every day and quarterly scans forever. It’s about learning to live with cancer in your body. Being contaminated and knowing it might decide to take over again. Worrying about how many drug options you’ve blown through in the last year and how few are ahead. Getting a little more nervous every time one of the people on the support site loses the battle. Telling myself their situation was vastly different from mine – even if it wasn’t.

Yes, I know anyone who has ever faced the diagnosis is afraid of recurrence and I wouldn’t wish that on anyone. It’s hell on earth. But, knowing it’s still there – that the cancer cells are swimming around your blood stream waiting for the chance to grow, messes with you. There are GIST patients living with multiple inoperable tumors. Some of them large but stable. Tumors that already have a head start should they figure out how to mutate and become drug resistant. I am thankful I have only the 2 small ones.

Sometimes I picture it like the movie Alien where it’s a foreign being growing inside of me. I know my own body wouldn’t turn on me like this so it must be alien. I have control of my body. I don’t have control of this. If the liver tumors grown any more, we’ll laser them. I like that image.

Fire at will!