The Professional Caring Brigade

Friday is the day that everyone in medicine catches up and the phone starts ringing. Though I took the day off from blogging and attempted a get-away-from-it-all-day, I still spent the day talking about myself and my disease and how I feel--this time on the phone with what I've come to name the Professional Caring Brigade.

It started with the nurse at UVA, who kindly called to remind me of my various scheduled, sequenced appointments on this Monday. (They have been so great about bunching consults and tests into one day, so we can plan our travel efficiently). She also let me know that they had gone ahead and slotted me for my "required" appointment with the "counselor."

Gee. I didn't know I needed one.

This started me off on a whole line of thought on how the art and practice of medicine has changed generally, and breast surgery specifically. I remember when mom went in for a biopsy, (maybe 40 years ago)? She was told to pack a bag, show up at the hospital, go under general anesthesia and into surgery. They would excise the lump, send a frozen section to pathology, who would then say "cancer" or "no cancer" while she was still in the OR, and if it was malignant, they'd do a radical mastectomy, taking muscles and lymph nodes and all the tissue that could possibly be cancerous. She'd either wake up intact or not. Wow. I am astonished again now, as I was then, at her courage.

The good news is that the lump was benign and she went home with a scar. I do remember that she did her own pre-op counselling in the form of a shopping trip to Del Amo (I don't think they were called "malls" then). She bought an expensive (maybe $50?) sleeveless, form-fitting, shockingly low-cut cocktail dress in white crepe, with gold-sequined braid trim. "I'm going to wear that after my surgery," she said to me. And she did.

So things have changed, as we all know. There are studies and research, new techniques and tests, new diagnostics and new treatments. There are incredible reconstruction options, and hey, even insurance pays for it now. And, there is plenty of psychological support, all along the way, because mental attitudes do affect outcomes and survival. We know more and we do more. And I think most of it is extremely helpful to the patients, and I am comforted by having all these services available to me while I travel through this and choose what I want to do.

But it niggles me a little that while counseling is available, it is also "required." This has to be because of the litigiousness of medical care that has also come about in the last 40 years, right? UVA must see thousands in a year, and they have to cover all their bases in case of a future lawsuit or just plain buyer's remorse.

A lot of my rebelliousness must be due to my own intellectual arrogance. While I have chafed at the apparent slow pace of the progress of diagnosis, testing and eventual treatment, I now recognize that this time spent waiting has been necessary for me to mentally prepare for whatever lies ahead. And I've been doing that mental work on my own and with the help of friends and this blog, and I think I'm doing just fine, thank you.

"Counseling? I don't need no stinking counseling!"

But still, I have to go in for my mental "test" on Monday. Will I pass? Am I smart enough to outsmart the test? If I say I'm fine, I'm ready, will the counselor conclude I'm still in denial? If I say I'm a mess and I can't face it, will the judgment be that I'm depressed and not a good candidate for whatever? If I tell her I've thought all these thoughts, will the conclusion be that I'm just a complete over-thinking nut-job? The problem is that I know just enough psychology to be dangerous to myself and others.

You never get a straight answer from a counselor. Here's just one example: When I was told of my appointment, it was unclear as to whether both Bill and I need to go to this appointment, or just me. So I called back, left a voice mail for the doctor and asked one straightforward question: Did she want to see both of us or just me? I was out when she called back, and Bill said her answer was: "Either way, maybe you and your wife would like to talk about it." "What?" I said to Bill. "Talk about what? The appointment? My breasts? Like we ever talk about anything else?"

So, here's the conundrum: Now, whether we show up together or I come alone, that in itself becomes a signal, a piece of information on how we are dealing with my disease, together or individually. If we come together, it could mean that we are stable, committed to each other and will see this through in a healthy, equal relationship. OR, it could mean that I am too weak to face this alone and my husband is propping me up because I can't deal on my own. If I come alone, it could mean that I'm a confident, strong person on my own, sure in myself and our relationship, OR, it could mean that my husband can't deal with it and has abandoned me. See? I can drive myself crazy like this.

Actually, the way this particular scene is going to play out is this: the appointment is at 7:45 am. Bill will go with me if he's awake. How's that for a searing, insightful psychological analysis?

Later in the afternoon, I got another call from a new nurse. She said she wanted to touch base with me and answer any of my questions. OK, I said, here are my questions, and began to ask about technical issues, medical procedures, etc. Oh, she said, she didn't really know any of that, the doctors would talk to me about that on Monday. Now I was confused.

"So....what exactly is the purpose of this call again?" I wanted to know. "What kind of questions are you talking about?"

She explained that many people felt lost, helpless, uninformed as to where to get information, or had transportation, housing or financial issues that they wanted to discuss. I assured her that I have none of those concerns. She didn't believe me.

She was well-intentioned and kind, and it's her job to care about me. It was as if I was slapping her in the face to tell her that I wasn't buying what she had to sell. I felt a little bad for her, can any of us say "I don't need you" and not feel guilty just a tiny bit? I was essentially telling her that her function in life was useless to me. Rats.

So, I put on my psycho lingo and told her that I had an awesome "support network" and I had been "processing" through the "stages of grief." That I thought I was pretty much done with "denial" and "bargaining" and I was still working on the others in the fullness of time. "Well," she said with a sigh, "you may THINK you're done with denial and bargaining, but they have a tendency to come back!"

"Yes," I told her, "I fully expect that there will be more tears in my future as I go through this. But I'm a pragmatist, so I'm prepared--I went to Wal-mart today and bought 6 boxes of Kleenex, so I think I'm ready for what's next, OK?"

I think that might have done the trick. How can I be in denial when I've got 6 boxes of tissues ready to go?