All's Well

I do like when the word "perfect" comes out of Dr. LaCasce's mouth, especially when it's prefaced with: "Your bloodwork is." That's the word from today's visit. We chatted more about lakehouses and summer houses (rent vs own, sebago vs winnipesauke), cats (siamese that cry vs. domestic short hairs that cry), sports and kids (she has a six-year old boy), our agency search (she's on the committee) than how I was feeling. 

So all clear until next visit in July - blood, scan, check up. 

This was my first visit since returning to DFCI and I did feel a bit incognito sitting in the waiting room with my ID bracelet tucked inconspicuously under my shirt sleeve. Outside my department, few people know that I'm also a patient but that my change. I think I'm going to come out, so to speak, via a blog post on our external blog 

Here's the theme: watch and wait.

Or wait and watch. It's a rehash of some of what I've been writing here, but it's a point that coalesced a bit today. See, whenever I told someone that I'm watching and waiting, I usually hear how difficult it is. Even Dr. LaCasce said that some people have a hard time with it because when you hear you have cancer, you want to GET IT OUT OF YOUR BODY. So the notion of sitting around waiting... and watching... and waiting, can seem stresful. But here's the deal: once someone tells you have cancer, you will always be watching and waiting -- whether you're waiting for a relapse, or waiting for a clean scan result, or clean blood work. Whether you're 20 days or 20 years out of treatment, you're still going to be watching and waiting. If I had treatment tomorrow and was cured in a week, or a month, or a year (not an option in follicular lymphoma), I'd still be watching and waiting. 

Which is kind of where I am now.

So let's recap. I feel great. (No longer tired now that I've kicked the little coldy thing I've been fighting). Nothing remarkable or palpably growing in terms of lymph nodes. Bloodwork perfect.  

Time for a Nap

I'm tired.

A year ago, I'd take that at face value. I'm tired.

Maybe because soccer and baseball have started up and I'm running one division, co-managing one team and helping coach another.

Maybe because of the Mon-Thur, Sat/Sun activities (Friday is our off day) and because I'm eating "dinner" around 8 pm, getting the kids ready for bed in between bites.

Maybe because I just can't manage to get to bed before 10:30-11 and am getting up at about 5:30 (or earlier on crazy activity Tuesday).

Whatever. I'm just tired.

So as I muddle through this week. I try to remember that this is always how I feel in April. That I ran a pretty fast 5k last Sunday. That I'm still bike commuting from the train to work each day. That I was able to run a practice with 14 7-8 year-olds. That I'm fighting off a little cold. Normal stuff, I say. Normal.

 But cancer's an incessant little disease. Once the diagnosis genie is out of the bottle, there's no putting it back in. All the therapy, all the writing, all the talking it through in the world, will never make you forget you have cancer. So it sort of wafts and curls its way into the vents of your brain and tries to poison your normal. It tries to make you question every ache and pain as a symptom, as evidence of disease. Fighting cancer can sometimes be more mental than physical. You have to battle against those toxic thoughts that permeate your perception. And that takes energy -- which is hard to come by when you're tired.

 Today is Friday, though. It's a bright sunny day. I had a great night's sleep and I'm sitting here on a quiet Amtrak train, wearing my Red Sox jersey to work (it's DFCI's Rally Against Cancer day) and drinking my half-caf as I type this. And when I come home tonight, it's the start of a three-day weekend.  So I may be tired.  But I'm fine.

Writing

Why don't I write more?

That's usually the question I ask when I read the posts from frequent bloggers like Jen (http://andersonfamilyzoo.wordpress.com/2012/03/20/. Diagnosed with advanced -- she didn't say what stage, but from my rudimentary understanding of staging, it's either III or IV -- breast cancer, she's taken to the blogosphere like many cancer patients, with a prolific outburst chronicling her diagnosis and initial reaction. She posts frequently and she posts well, and she has a lot to share.

Why not me? 

There's that minor inconvenience of a job that takes up about 45-50 hours a week but I don't think that's the full excuse. I had three weeks when I wasn't working and I posted more frequently then, but not daily. There's something deeper going on. I'm just not exactly sure what. And I want to know because if I can figure it out, I'll know whether I want to fight it or let it go.

Part of it may be that there's a part of me that is inherently a private person. And writing can be an intensively private activity but a highly public experience.

Part of it may be that, unlike Jen (see above), there's happily little to report except once every three months. I'm lucky not to have MRI scans and PET scans and biopsies as part of my daily routine. I'm not wondering how I'll look bald, or how I'll keep weight on during chemotheraphy. I still don't fully associate myself as a cancer patient. I don't feel like a patient. I feel the same as I did before June 2011.

I feel the same.

And yet the more I write, as much as I like doing it, the more I identify as a cancer patient. So there's an inherent unconscious headwind and big, giant uphill slope that I'm running up and into whenever the urge strikes to write. I have an idea for a post. I jot it down. I let it go. Happy to have had the thought and capture it, and then to go on my way as just any old person. 

I've been struggling for weeks with the decision of whether to go to a conference or not. It's by the Lymphoma Research Foundation; it's a half day of talks for Lymphoma patients and families here in MA with presentations from mostly Dana-Farber doctors, including Dr. LaCasce. On the surface, I've struggled with it because I'm not sure how much I'd get out of it and it conflicts with a big event that Matthew's participating in.  But I think the deeper conflict is that to go -- to surround myself with other lymphoma patients and families -- is to identify myself as a patient. 

And maybe I'm not quite ready for that. Maybe I'll be ready next year. And until then, maybe I'll just write a little more.

--michael