Monday, July 18, 2011

The Plan

To say it wasn't the best day to spend your birthday would be an understatement but on Stacy's birthday last Monday (7/11), we were back at Dana-Farber for scans, blood work and a meeting  again with Dr. LaCasce.
The scans showed a couple of slightly enlarged lymph nodes in my abdomen but that was it. My blood work looked good (eventually, I'll probably understand what makes it look good or not good, but for now, I'll just take Dr. LaCasce's word on the matter. She did explain what it was that specifically looked good, but the only word I really heard was the "good" part.)

By the way, I like the way she gives news. Somewhere in between entering the room, shaking my hand, and taking a seat, she's already laid out the news -- in this case, two small lymph nodes in the abdomen. "Out of how many nodes?" I asked.

"Loads of nodes."

So what do we do? We wait and watch. Or watch and wait. Or actively monitor. What that means is that every three months I see her and have blood work; and every six months or so, I have scans -- unless I have any symptoms (fatigue, fever, night sweats, noticeably enlarged lymph nodes, etc.).  And we watch and wait, and with luck, we stay in watch and wait for a long time.

Thursday, July 7, 2011

Day Eight

There were a lot of things banging around my brain these last two days. It seems like an eternity since I met with Dr. LaCasce but it was only two days ago. Tuesday.

We talked for an hour but I have no game plan yet -- just a lot of talk about what follicular lymphoma is and how it is treated.

I've slowly been leaking word out to different people -- it's exhausting. The telling of it. Exhausting, and a bit numbing. The more I talk about it, the more I write about it, the more detached I seem to get from the diagnosis. I'm not sure if that's good or not. It just is.

Monday we go back for scans, blood work and hopefully a discussion that ends with a treatment plan.  Or a non-treatment plan. Follicular lymphoma tends to be slow growing and thus a plan is often to watch and wait. Except where it's not slow growing. At this point, I'm not sure what it is. Or where it is. Forget why it is.
I try to focus on the likely possibility that I'll be watching and waiting for years -- hopefully many years, and then be able to treat -- if not cure it. But who knows what might develop in the years that I watch and wait.

Still it's hard to be watching and waiting to become sick.

There is the chance that it's very local and thus can be radiated away but I don't want to hang too much hope on that.

And there's also the chance that it's aggressive enough that it needs to be treated chemically now, but I don't want to hang too much anxiety on that, either. We'll know when we know on Monday. Until then, I'll be playing golf, watching baseball, and enjoying the weekend.

Sunday, July 3, 2011

Day Four

Yesterday was a great day because yesterday was a regular day. Did errands; went swimming with the kids and then dinner out with our good friends. For the most part, the issue of cancer was in the background.
Today's been a bit harder, maybe because I had a little  down time and my mind's been wandering, making it harder to stay in the present. I start thinking about whether this will interfere with my softball season; my summer vacation; my life. And that's been frustrating, disappointing, even annoying. But the harder part is that I realized I've kind of been thinking of Tuesday (when I see my oncologist for the first time) as the end of life as I know it. It's as if until I see her, I can almost pretend that I don't really have lymphoma -- yet I know that as of Tuesday, I will have it. Doesn't make a whole lot of sense, but then, rational thinking isn't always a given.

Thankfully, David and family (sans Jess) came to visit and it was great to see them all and, of course to play some baseball with the boys.

Friday, July 1, 2011

Day Two

I'm struck with the contradiction of blogging about a cancer diagnosis. On the one hand, I want to focus on living each day and not thinking about my diagnosis, and yet writing about makes me think about it.

On the other hand, whether I blog or not, I can't not think about it, so why not do what I do -- write. And put it down on paper. And get it out of my head.

I've let my family know the diagnosis and they've been incredibly good. What else would I expect? The boys don't know yet and until I know what I'm in for, I don't plan to tell them.

Tuesday I see an oncologist and it will be good to be dealing with people who are used to seeing this -- every single day. My ENT? Maybe she's seen a handful of cancer diagnoses in her career. I think the thing that made it tougher was that she seemed more sad than I think she needed to be. I just need an oncologist to say, "Yep, we know what it is. We know how to treat it. Here's a plan."

The best thing about today -- besides the fact that it's one day out from dx -- is that it was a typical busy day. Work was very busy and it's not that I didn't think about it -- I drifted into thoughts of my diagnosis during a boring part of a meeting; I watched all the people walking around Copley and thought "How many of them have a cancer diagnosis? Am I the only person out of the hundreds I see who has to deal with this?" I made appointments to see my oncologist; I talked to a friend who knows; I talked to my Dad. But in between all those things, I just did what I do -- I worked, I played scrabble on my phone, I went to the end of Matthew's baseball practice. I just lived the day.

Looking forward to a four-day weekend with hopefully a few answers on the other side of it.

Day One

I remember sitting in the doctor's office -  your garden variety suburban MD office -- and thought: "Is this the place I'm going to hear I have cancer?"

I looked around at the medical illustration on the wall -- an annotation of parts of the ear, nose and throat -- the throat cameras and instruments, the signs of domestic abuse poster that seem to be in every HVMA office, and I waited.

And then a polite knock on the door.

Until my ENT who performed the lymph node biopsy came in, I was suspecting it to be nothing but as soon as she walked in, I felt like it was going to be bad news. She seemed distracted, checking the surgical site where the biopsy took place almost as an afterthought -- like she just wanted to get the dx out there and get it over with.

And then the news.

It is lymphoma.

We talked for maybe 5 or 10 minutes without actually exchanging any real information other than I wanted to be treated at Dana-Farber -- I gave her Arnie Freedman's name. I asked about the logistics of scheduling.  I asked about physical restrictions (I did have a softball game that night). And then I think we went over those same questions again. And maybe a third time.

Looking back, it's not just that I couldn't process the info but it was as if I felt that if I didn't leave the ENT  office. I wouldn't have to deal with it.

But I did leave.

And I am dealing with it.

I remember sitting in my car and thinking who do I call: what do I say: how do I say it? Should I drive home so I can tell Stacy at home? Should I call my boss or go back to the office? Should I call my family? Email them? What's appropriate? What's best?

I called Stacy.

On day one, I alternated between thinking of present state and possible future state.  I imagine that will be my toughest mental  battle.  When I think of the future and try to project out 10/20 years, that's when I start to lose it. When I focus on the present -- how I feel today -- fine, thank you-- I'm calm and rational.  I said to Stacy -- this may change our routine, but it's not going to change our life.

I remember eating dinner before my softball game while Noah and Stacy played alphabet go fish. I was watching him play and he was getting silly and having the greatest time -- laughing and playing -- and I wasn't thinking about my dx at all.  This is how I need to live. Each day, as the cliché goes.

I remember my dream last night. It's one that I've had before -- or at least one that felt very familiar.  We were on some island (not sure who the other part of the we was) battling some cyclopsian type invaders. And we turned them away but knew they were coming back-- and we knew how we would need to fend them off because I had lived this dream before.  And sure enough, they came back and we hid in some basement/cellar type space, and then we attacked and we were fine. A metaphor for the battle ahead? Or just random thoughts rattling about because we're  all reading The Hunger Games?

That was day one.

It's day two now and I have the same mental struggle - present life vs future state. And the same logistical questions? Who to tell? How to tell? When to tell?  And of course, the bigger question: what next?