cancer – p i x e l s c r i b b l e s

Drowning

For months now I’ve sort of let myself be carried by the rapids, buffeted by surging waves of work and family and personal changes, and dragged below the surface by a relentless undertow of depression. I’ve felt more and more helpless and more and more incapable, barely managing to function some days. The occasions that I’ve felt energetic and powerful have been fleetingly rare. I spend much of my time trying to distract myself, and the rest of the time hating how little I’m accomplishing.

My life doesn’t seem all that difficult. I am so lucky in so many ways. I have so many wonderful people who love me. I have a nice home. I have a good job. My unhappiness stems from feeling that I could be more than I am, and my apparent inability to do anything about it. My impatience to get there fast, and the trouble I have with planning and executing long-term strategies for personal growth.

The world feels like a blur around me; I see snatches of information here and there but I can’t seem to grasp things the way I used to. I don’t do anything, but I feel like I have no time.

Then I lost a lifelong friend, very suddenly, to cancer.

And then my mother told me, “If you have anything you want to say to your dad, you should come home soon,” because he’s got cancer too. It’s not the throat cancer again; this time it’s small cell lung cancer, and he’s in stage 4.

I am trying to allow myself to feel this hurt. I am trying not to discount the things I am going through. I am trying to accept that I can’t just handle everything. I’m trying, and it’s really hard. Because I feel like I should just be able to deal with it. Like I should be stronger somehow. Like I am being lazy.

I need to step back, and breathe, and feel, and forgive myself, somehow.

Mary

For whatever reason–my introversion, the fact that I lived off-campus–I bonded with very few fellow students in my years at the University of Kentucky. There were perhaps three people who truly meant something to me, enough that I think of those people frequently to this day.

One of those people is my friend Mary, who I met in my Teaching English as a Second Language courses. She was taking them at the graduate level, while I took them as part of my undergraduate linguistics degree (and received a Certificate in Applied Linguistics for TESL upon completion). Mary had children around my own age, but the difference in years and experiences between us never mattered. We were kindred spirits. We were interested in people, in stories, in learning. I remember riding the bus around campus with Mary, talking about anything and everything. I remember visiting her house and trying her homemade sushi rolls.

For class once, students were to prepare lesson plans as if we were teaching non-native speakers of English. I focused my class on advanced learners and made a creative writing lesson. Mary eagerly read her paragraph to the class, about a craft she’d once learned, and while I don’t remember the details, I can still hear her in my head saying “We would poke holes in” whatever substance the craft was made of. “Very sophisticated, Mary,” I remember saying, and thinking later that since I was supposed to be teaching English, I probably should have written the word “sophisticated” on the board.

Mary had curly auburn hair, glasses, pale skin and an easy smile. I can still see her face in my mind. She seemed young. She was an accomplished singer and songwriter. A recent skim through some old blog posts made me remember a party she’d held, how much fun I’d had playing pool at her house and looking at her husband’s LEGO collection. “I bet she’s on Facebook,” I said aloud. And so I searched.

I found many people with her name, but none that quite fit. Many were too young, many had the wrong background. Finally I decided to just google her and see what came of it.

And that’s when I found out that my friend died of breast cancer in 2007.

She died five years after I graduated and we lost touch. Just five years.

Now that I think about it, I’m remembering her saying something about battling breast cancer before. I had recently beaten cancer myself, which is probably why we talked about it at all. She always seemed so strong. Sure, she had stress, and there were things she confided in me that I will keep to myself forever. But I never felt that she was in danger. I never worried.

I never thought to keep track of her after I moved and changed my name for marriage. She probably had no idea how to find me.

I just let her go, as if friendships should be discarded the moment something in life shifts.

I’ve always tended to punish myself in this sort of situation, to feel overwhelming guilt. I do wish I had been a better friend to Mary after college. I wish we had stayed in touch. I wish I had been there for her when she was struggling at the end.

But more than that, more than my petty, destructive need to blame myself: A beautiful lady is gone. A wife, a mother, a writer, a singer; a caring, philosophical, intellectual woman is gone.

My friend is gone.

Remission

Today, March 25, 2007, is my ninth BMT birthday.

On this day in 1998, I lay in a hospital bed wearing a new pinkish purple Easter dress as my brother’s bone marrow dripped from an IV into the groshong catheter implanted in my chest.

It was actually kind of anticlimactic, after the six months of chemotherapy and surgery and pain and vomiting and frustration at not being allowed to go outside. I laid around in bed for two hours and that was it.

They call it a birthday because you’re replacing your bone marrow–essentially starting your body over, being “reborn”. I had to have all my baby vaccinations again, and it’s possible that other things changed. But the procedure was overwhelmingly successful. My body didn’t reject the bone marrow, and my immune system had built itself up again in 21 days. I went home and never again set foot in Markey Cancer Center’s bone marrow inpatient area.

It’s possible that my leukemia was gone before the bone marrow transplant took place. I suspect that the second round of chemotherapy got it, since my tests after that were clean. But we did another round and then did a BMT just to be sure. My particular cancer was rare and my treatment was experimental.

I’d say my doctors made pretty good choices, overall.

It has been a strange nine years, readjusting to normalcy. Some days I forget I ever had cancer. Some days I’m thrilled to be here to experience the world.

Some days I’m still a little angry that the treatments that saved my life took away the one dream I’ve held constant since childhood.

A large struggle since leaving the hospital has been against the desire to foster my own victim status. Being a victim is very empowering. People have to listen to you. You feel a sense of entitlement. Back in the beginning, I’d manipulate conversations so that I could casually remark about how I’d been in the hospital. I’d downplay it, of course–even then I realized that my experience was far easier than that of many, perhaps most, cancer patients. But usually there was no need to mention it at all. Somehow, I’d always find a reason to.

This was of course a part of my healing process. I’m not saying I should have somehow bounced back immediately. I did need to talk about it. My point is simply that there comes a point when you’re saying the same things over and over and not getting anywhere. I’ve seen that happen plenty of times in my life, but I absolutely refuse to allow it to mire me in victimhood.

No matter how good it feels to be a victim, it ultimately keeps you unhappy. You need the euphoria you feel when someone takes an interest in you, and as time passes and the immediacy of whatever made you think like a victim fades, so does other people’s interest. You sense that, and it makes you feel worthless. And you have a few choices. You can continue to desperately milk the original situation; you can come up with a new situation to victimize yourself; or you can get the hell over it and find a proactive way to get noticed.

It’s possible that without Sean’s influence on me early in my recovery, I would have wallowed in my victim status for years. I will always be thankful that he came into my life when he did.

I now have one thing that still makes me feel like a victim. It was especially bad towards the beginning of my marriage to Sean. That is, of course, infertility–the damage done to my ovaries by chemotherapy. I have for the most part come to terms with the possibility that I may never give birth to my own child. But it does still hurt me when people ask if I’m planning on kids, or when I don’t have a period or when my period is strange and I decide to take a pregnancy test. I’m obviously not completely over it.

But I won’t be a victim of this, either. I am the one who decides how my life is going to be, and I have decided that I am going to do the best I can to learn and grow and experience the world and people around me. If children someday factor into that, adopted or otherwise, then great…but I’ve decided that my life paradigm needs to shift. So I probably won’t be a stay-at-home mom who gardens and cooks healthy dinners every night and takes the kids out on fun trips…so what? I can choose to do any number of things that make me happy. Just because one door closes doesn’t mean there aren’t others to choose from.

I can also make the conscious choice every day to think about all the good that has come into my life.

So it’s my bone marrow birthday. The anniversary of my rebirth. A day I will always remember, and a day on which I typically find myself looking back and evaluating and ultimately looking forward.

I hope I’ve grown.

I don’t want to go so far as to say that someday I will stop observing this day, but I am committed at least to not letting this day, and the history behind it, define me.

Life: a thing you never expect

After my cancer treatments, I couldn’t have periods naturally. I started on hormone shortly after I recovered, and took it for a few months. With the artificial boost, I was able to have periods. Transitioning on and off the hormone gave me horrible mood swings, and I didn’t like having to pay $10 a month or whatever it was to get the pills. So I finally just decided not to take them. I didn’t go back to the GYN who’d prescribed them, either; not because he wasn’t good, but because I thought I knew everything I needed to know already. He’d performed a blood test, twice, that showed that my brain was sending too many signals to my ovaries. This told him that my ovaries weren’t functioning properly–they weren’t responding to the brain by releasing the proper hormones. He said that he’d never seen someone with that result get pregnant.

For the past five years, I’ve been trying to deal with that prognosis. I’ve failed, pretty much; if anything, it’s been even worse lately. Seeing mothers and their children has filled me with such bitter longing that I’ve had to force myself not to cry.

And then, on Sunday night, I started having a period.

It went strong, very strong, just like a normal period. The cramping and moodiness was the same as I remember. It seems as of this morning to have died down…meaning the length was pretty much normal, too.

I don’t know what this means, and for these four and a half days I have struggled to hold back my joy. Everyone except Sean seems to assume upon hearing this that I can have children. Sean is more skeptical; he doesn’t understand why I would suddenly have a period out of the blue…and why it would happen now, after so much time.

He doesn’t want me to get my hopes up. I don’t want me to get my hopes up either. I think it has already happened, though, subconsciously. I think that my natural state of being has been to not give up hope. Somewhere inside, I always felt there was a chance, even as my conscious mind tried to stay logical. It was probably those two dueling sides that kept tearing me apart emotionally.

I’m going to try to stay as neutral as I can until my doctor’s appointment next Wednesday. If we run the same test as I had before, that should tell us something. Either things are the same as they were, or they’ve changed somehow. Maybe there’s another test they can do, too; I don’t know.

Right now I am just a prickly ball of barely-contained emotions.

I don’t want congratulations at this point…you’re free to give them anyway if you wish, but I’d rather not celebrate anything until I know for sure. That, and just letting the whole thing sink in, is why I haven’t written anything about it until now.