Anne SG and the Big C

Where is that other shoe and when is it going to fall?

Monday was my last day at the mercy of the Cancer Center of Carolina’s finest radiation techs.  I spent 6 weeks going there daily for my dose of radioactivity.  It wore me out, burned my skin, and frankly, got really old really fast.  But now I’ve graduated.

And I appear to be done with cancer treatment except for another surgery or two for reconstruction.

But, of course, I thought that before and ended up in radiation.  But perhaps this time I’m really done.

And the cancer is simply not permitted to come back, since I can’t have chemo again.

But nagging in my mind always is the fear that the cancer will come back.  I’ve willingly submitted to every manner of treatment offered and recommended.  I’ve been a good little cancer patient.  I really want to look ahead and plan for the future.

But my life has utterly changed: my home, my hometown, job, my outlook on life.  I’m a little at sea.  I’m trying, for once in my crazy life, to slow down and let the future unfold.  Only I’m the person who always said that you make your own happiness and determine your own future.  I feel an intense need to figure out what I am going to do next, and at the same time, a desire to just sit and be for a moment.

And, of course, that nagging voice reminds me that I don’t actually know what kind of future I have.

But I guess none of us really do.

Treatment: subjection to some agent or action (Dictionary.com)

Okay, this word has been bugging me since I got my diagnosis. Treatment. I can’t say I ever considered it before, but now I hate the word. It’s no wonder that the word treatment usually goes along with another word: Silent Treatment; Waster Water Treatment; Cancer Treatment. All of those associations are negative.

I have had loads and loads of “treatment” (or is it “treatments?” I don’t know). I have had surgery, chemotherapy, and, most recently, radiation. Each of these treatments (do you hate the word as much as I now do, having read it so many times?) has been an attack on my body–first the slicing and removal of part of my body, an emotionally laden and physically obvious part; then the injection via IV of poisonous chemicals that not only killed roaming cancer cells (we hope) but all other fast-growing cells, wreaking havoc on my nails, hair, and skin; and now the deliberate irradiation of my chest, all the way to my lungs–an act that has a known carcinogenic effect! Treatment is a euphemism, it seems, for partial destruction of a self. And not just the physical self.

I have struggled with my identity. I look in the mirror and don’t recognize the person there–she’s scarred, noticeably older (much more so than the 11 months I’ve aged since I found THE LUMP), and gray. What hair has grown in is short and incredibly curly–something I always dreamed of, especially in the 80s when Big Hair was In–but now I can see why people with curly hair hate it. I’ve had my hair colored (in as natural a process as is available on the market these days) twice and still, I don’t know who that person is. She looks kind of butch, and kind of like a housewife who has let herself go. Never mind the other changes that have their effects on my identity: a move up the east coast from FL to NC; being away from the work I’ve done all of my adult life; no longer being able to take for granted my once uncommonly excellent health.

But recently a couple of comments have jarred me and made me really think. The first was at my July reconstruction surgery, when the anesthesia nurse was going over my records. My father in law was with me, and was sure to inform the nurse of my horrific allergic reaction back in April. The nurse commented on how rare Stevens Johnson syndrome was, and I joked, “yeah, the doctor said I was one in a million.” He replied: “and 1 in 5 million that you’re still with us.” I knew it was pretty serious when it happened, but I had never had anyone say that to me in such a concrete, matter of fact way. In fact, no one has been willing to give me any concrete numbers, odds, or prognosis, except my “impressively high” odds of recurrence. It’s hard to swallow.

Then yesterday, I mentioned in an email to my first grader’s teacher that I’d like to volunteer at the school as soon as my radiation treatment is finished; she replied that she was shocked to hear that I’ve been in treatment (there’s the ugly word again, twice), because I always seem so happy and fresh. That was the good kind of unexpected comment. And I realized that, well, I appear that way because I am happy, at least in part–I’m happy to be alive. I’m happy to breathe this beautiful autumn air and to be able to have an active role in my children’s lives and education once again. For some time I’d been bogged down in a nasty fog of depression when we uprooted our lives from Tampa, where we’d lived for more than twice as long as anywhere else I’ve lived since finishing school. Moving to a new city and dealing with the guilt and anxiety of putting children in a strange new school, as well as the overwhelming prospect of yet more treatment when I thought I was done, had really knocked me down.

But I realize also that things are never really what they seem, and though I look at myself and see a worn out old hag, someone else sees a healthy, happy spirit. I’m going to hold on to that for now. Instead of wishing I could get my old self back, maybe I can learn to live happily with all the changes I’ve experienced–the good and those that seem bad.

“Life is a series of experiences, each of which makes us bigger, even though it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and grieves which we endure help us in our marching onward.” (Henry Ford)

Setbacks.  Ah, joys. I have experienced several recently.  First, the LTR (laryngotracheal reflux) I have been suffering from since last fall has recurred and stayed with me since chemo (it had disappeared after my initial surgery) and my new insurance refuses to cover the one and only med that actually works.  So lately I’ve been in agonizing pain all day, every day.  Trying to be semi-normal toward and amongst others has been tough going at times.

Second, I met with my new oncologist here in NC and she has prescribed a bunch of tests (bone density, ultrasound, blood work, and more) to check various states of my being, and she also believes I ought to have radiation, given the amount of tumor I had and the “impressively high” odds I have of recurrence.  This was not what I wanted to hear.  What I wanted to hear was that she had a cure for my chemo brain, which doesn’t seem to be improving.  But she just said that will take patience.  Sometimes it takes years.

While I feel very well taken care of, and was overall impressed with the facility, which seems to offer one-stop shopping for the cancer patient (they even drew my blood right then and there–about 103 tubes of it), the last thing I wanted to hear was that 1) even though I’m on hormone blockers I might still be producing estrogen, which is what feeds my type of cancer, 2) that I might have to endure more treatment via radiation, 3) that the hormone blockers might be causing osteoporosis.  I appreciate her thoroughness, but would have been happier had she just said I am a-ok and ready to move on with my life.

No such luck.

I did get a referral to a plastic surgeon to consult about what I hope to be the final phase of my reconstruction.  I need to find another word for it, though; I can’t ever hear that word without thinking of it with a capital R, and no self-respecting southerner could hear that word without conjuring up images of carpetbaggers and the general misery that followed the Late Unpleasantness (you may know it as the Civil War or, as my Virginia relatives used to say, “the Wawah of Nawthun AggRESHun”).

monster: an animal of strange or terrifying shape (m-w.com)

Tomorrow I head up toward Jacksonville and the Mayo Clinic for a reconstruction surgery. I have six–yes, six–appointments Wednesday for pre-op stuff (chest x-ray, fasting blood work, etc.), and the surgery is Thursday.  While I am enjoying the medical attention, my children will be frolicking at nearby Amelia Island with their grandparents.  Hardly seems fair.

I chose the word “monster” to title my post because the physical changes I’ve undergone as a result of this cancer have left me feeling monstrous.  The process of rebuilding to make me look, while clothed, as normal as possible is a scientific feat, but it’s also alarming.  All my breast tissue is gone.  Why would I even want to make new “breasts”?  I have battled with this part of the process in my mind all the while going through with it.  

With my scars–which include notches on my sides where the drains were after the initial surgery–I have barely been able to stand to look at myself when changing clothes.  It’s simply not natural.  The tissue expanders that the surgeon put in and slowly filled to an acceptable size are hard and unnatural looking and feeling.  There’s a sense of unease–and the word I really want to use here is dis-ease.  

I am hoping that this phase of the surgery will help me to feel somewhat normal again–less Frankenstein-like and more Anne-ish.  But I have to also realize that no surgeon can ever make me whole again; what he can do is help me feel at ease in my clothes.  Only I can decide when looking in the mirror will be bearable again.  I’m not looking for miracles.  But I can’t say I’ve really totally accepted the way things are, either.