Who I was/Who I am

The NY Times, in its ongoing fabulousness, has an article today about coping with identity changes, and I love it.

Two quotes in particular stand out. First,

A critical illness is like a great permission, an authorization or absolving. It’s all right for a threatened man to be romantic, even crazy, if he feels like it. All your life you think you have to hold back your craziness, but when you’re sick you can let it go in all its garish colors.

This is so true. And once the critical illness is over, the permission fades. You were allowed to deviate, given lots of leeway, even permitted to say NO to things and to live your life to maximize health rather than busy-ness. But as time passes, people stop thinking that you are delicate and must be handled with care; they start thinking it's time you stopped whining and started being like everyone else again.

The other quote I loved:

I wanted to be someone, a recognizable personality, a full-blooded, memorable human being, and not just a cancer patient. I had already lost the person I used to be, that healthy, energetic 45-year-old woman. I wasn’t capable of losing more. Other friends had their own spins on claiming individuality in the cancer world.

I alluded to this in an early blog post. At first, I wanted so much to maintain my professional identity, to be the smart, strong person who just happens to be going through cancer treatment. I didn't want to be like those grey, wispy, shadowed people sitting in the waiting room in their headscarfs and their wheelchairs. When I had surgery and couldn't wash my own hair, it was hard to accept help because it just drove home my incapability. When I couldn't walk outside for a full half hour at a time, I felt the loss of my physicality more than I had ever felt its presence.

What the writer doesn't say, and what happened too slowly for me to watch, is that you really can go back to something like your old life, and leave that self-loss behind; but it's almost like a projection of your old life, one rendered in all the same colors and moving in the same patterns, but against a different screen, parallel to the old but never quite touching.

I actually have to fight with myself not to just go the straight denial route, and turn my back on the truth that I had cancer, and ignore anything to do with cancer. Someone close in my social circle just started chemo (her first treatment was on the 2-year anniversary of my last treatment). It is surprisingly hard for me to see her go through this, in part because I just want to deny, deny, deny; and, unexpectedly, her reality becomes a constant undercurrent for me, reminding me of what I experienced and what I am as a result.

Survivorship Plan

Boy, the articles just keep coming.

Noah sent me this bit from Yahoo! News about survivorship plans, a new trend (like fab shades!) in cancer care. My own oncologist did not give me a written plan, but I am clear on many things:

• For the next year (like the last), I'll have checks every 3 months. This includes blood testing, to look for chemical markers of breast cancer recurrence, and physical exams.
• Once a year, I have a mammogram. If anything funky is found then or at any other time, I may also have an MRI.
• If I were to notice any difficulty breathing or other heart-related symptoms, I expect I would have an echocardiogram, since I had some of the chemo drugs that can cause heart failure. But there is no special monitoring of that because I've seemed heart-healthy.
• After the next year, my exams will go to 4- to 6- month intervals for up to the 5-year mark. After that, they may revert to annual checks.
• I have my nutrition plan with my nutritional oncologist, ongoing.
• I have copies of all my records, including pathology reports and treatment records.

What I don't have is a very specific list of symptoms to watch out for. I have a mixed opinion of that piece of advice. The power of suggestibility surely has to be weighed against the benefits of knowing what to look for. If I knew that a persistent pain in the 3rd rib from center was a warning sign of metastasis, I'd be rubbing that 3rd rib constantly to assess it, and pretty soon it would indeed hurt like hell! So perhaps being in the dark a bit is good for me here.

Overall, though, it seems to me that better knowledge and awareness are being emphasized, and that is terrific. Also, the medical community is awakening to the fact that cancer treatment is emotionally and cognitively overwhelming, and realizing that we'll all have better outcomes if physicians take on just a tiny bit more of the burden of managing information (not just drugs and procedures). Based on the confusion I saw even in intelligent, thoughtful members of my own support group, this will surely help!