My Cheating Heart

Paul Klee, The Sick Heart

The other day I made an appointment for a second opinion with Dana Farber for when my biopsy results are in.  I know getting a second opinion is a common and accepted practice that is expected for serious diagnoses like stage IV cancer. But still, I can't stop feeling like I'm cheating on my oncologist.

I know in my heart (my cheating heart) that this is a smart move. The right move. It's what cancer patients are supposed to do. And I'm certainly not sneaking around about it.  But it still feels stressful.

Part of the stress is just plain logistics. Now that I have the appointment, I need to get reports sent, slides sent, images from the tons and tons of scans I've had burned to CD and picked up to bring with me. There are forms to fill out, insurance to see about, and a drive into the city with traffic and parking hassles.

Part of the stress is the unknown.  I'm comfortable where I get my care and I know how to do it.  I know where to go, what to expect, who to go to when I have a question or concern, and how to go to them.  This new place?  All new. And that makes me feel like a 6 year old dropped off in a room full of strangers (ok, this happened to me a lot growing up, and I was never good at it, so this may just be my issue here, but there you have it).

Now, to be fair, Dana Farber is good at managing the logistics and unknown. I spoke for 45 minutes with a scheduler in the Breast Cancer department. She talked me through everything and immediately emailed me a set of documents with parking and directions, a list of what to get with tips on how to get them, and told me she was here to help and to never hesitate to reach out to her if I had questions. But still.

(Although actually, the really nice woman I spoke to about the appointment, also sort of irked me a bit--she kept telling me things like "Ok, first I want you to breathe--we have great doctors who help people with bone mets live for decades.  You're going to be fine." And I was thinking: I-already-am-breathing-and-my-own-oncologist-also-told-me-bone-mets-were-often-very-treatable-and-you-have-no-idea-if-I'm-going-to-be-fine-and-I-resent-being-treated-like-I-was-only-told-to-go-home-and-die-except-for-you-guys-because-I-wasn't-told-that-at-all-and-I'm-still-a-long-way-from-giving-up!  Yeah, I know she was actually being compassionate and comforting and my thinking was completely uncalled for.  I think cancer makes me a little high strung.)

And I'm sure part of the stress is just human nature and a natural sense of loyalty, even if it spreads beyond reasonable places for loyalty and into business transactions this way. It's maybe not appropriate here, but it's part of who I am and the kind of person I try to be in other settings.

But, unfortunately, I think my really big stress with getting a second opinion right now is once I get my second opinion, do I stay where I am or should I transfer my care? 

Now, before you even say it, I know I'm getting ahead of myself here. First I need to get the stuff and go to the appointment, then I need to think about the information, see how I feel, talk with my husband, do a gut check, etc., etc., then I can make a decision based on actual facts.

But there's just so much unknown! The future is yet to come and I don't have a crystal ball anywhere. I don't know if the care would be better one place or another--not just the treatment, but the care that goes with it. If I stay or go, would I regret it? What if one oncologist ended up doing something that worked better than what the other would do? What if a clinical trial at one place would end up working better for me than one at the other? Goodness knows, I can always find something to worry about no matter what I do.

One factor involved in this is, I like my oncologist and her nurse practitioner.  I am very happy with the care I've received, they are both smart and compassionate, and very on top of things.  My oncologist is up to date with research and studies and has good ideas and good solutions for the things that have come up so far. And she and her nurse practitioner are comfortable to talk with. I don't know what to expect at Dana Farber and, even after I have my appointment, if they are lovely and compassionate, I will still wonder if there may be a difference between attentiveness as a new second opinion and attentiveness as an established patient. Because even when I know things, there's still so much left over not to know. And you probably see what I mean about being good at finding things to worry about!

Another factor is, the place I've gotten my care so far isn't a dud hospital by any means. It's regionally well regarded in cancer care and nationally ranked in other specialties, including one I use. And, the place I go to did multispecialty consultive care before it was cool--it's really nice to have all my doctors on the same page without having to do the work myself. But, on the other hand, Dana Farber is a national leader. They do a ton of research, and are staffed by national experts who deal only with breast cancer. And they have a ton of programs and peripheral things to help the "whole person" dealing with cancer. They even have a conference call metastatic cancer support group--how perfect would that be?

If I'm being honest with myself (and I'm trying to be), there's another shallowish thing about Dana Farber that is really tempting me: Dana Farber doesn't have to explain itself.  Well, I mean of course they do, every place does, but what I mean is, lots of people who care about me seem to feel responsible for making sure I'm making good decisions. They want to make sure I'm getting good care, which is nice. Now, the people who have actually gone to appointments and know people who have gotten care where I do don't question me, and the questions are pretty much what you would ask about any cancer care.  But I feel like, people would be less likely to ask the questions about Dana Farber's recommendations for me. Because, come on, it's freaking Dana Farber! So that would be convenient.

And, of course, besides the "end of discussion" possibilities behind the "it's freaking Dana Farber!" thing, there's a part of me that understands that the fact that I can even write, "It's freaking Dana Farber" and have it mean something says a lot about the place itself and its reputation.  Which is something I need to think about. Not that I would necessarily get different treatment at Dana Farber for my not-that-rare kind of cancer than I would at other well run cancer centers, but I would be foolish not to consider what that reputation is built on.

So now I wait.  I wait for my biopsy results and my appointment with my oncologist.  Wait for my other appointment with a Dana Farber oncologist. Wait to see how it all goes and wait for some kind of sign to tell me what to do.  Then (possibly) wait for treatment to begin and wait to see if it works.

But as I write this, I'm thinking of one other thing, the last thing, which is that choosing between one local location or another for excellent care with a reasonable chance of decent outcomes, covered by my insurance, accessed with my working car on safe and well maintained highways, gone through with the support of supportive family and friends, and begun after a wait for results and appointments were I still feel petty good and am able to walk around while I wait (with a little help from Tylenol which we are able to afford), has got to be a pretty good problem to have. Yeah, I would give it all up for no cancer, but on the other hand, being a little grateful for having such choices probably wouldn't hurt me a bit.