Brat

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All around me this month of November people are being grateful.  Gratefulness posts fill the Facebook feed. People are grateful in the newspaper. Soon it will be Thanksgiving, and people will take a pause on bad news and be grateful on the radio too. This gratefulness is very wearing.

I do not feel grateful. Although I know I should.

It is not yet three months since I was diagnosed with  bilateral breast cancer, and I have a lot to be grateful for.  My surgeon and staff were wonderful, and surgery went well. Lumpectomies, rather than full mastectomies. My surgeon is happy with the cosmetic result. So am I. Now it is November, and the prognosis is good. Friends and relatives call and write and show up in our family’s life to take care of the business that I can’t take care of myself. Despite being truly thankful for the help, I am not experiencing gratefulness in my heart. I see rather than feel the good fortune that surrounds me.

I am afraid.

I still cannot use my arms freely. I tire easily.

I wonder what the next treatments will bring.

Lately, I am a grumpy brat.

And unfortunately for my family, I have never been very good at “faking it.”  Honesty oozes out of me, like ripe cheese.

It’s taking far longer to recover from my surgery than I expected. I am not sure what I expected. The scar tissue in my underarms still pinches or burns if I lift things, move or twist. My lymph system hasn’t figured itself out yet, and sometimes my underarms are puffy with lymph fluid that can’t circulate properly. Three of my perfectly healthy lymph nodes in each armpit had to be removed to ascertain that they were cancer-free. I should be grateful that there were cancer-free, I know. But I just want my lymph nodes back. If this puffiness lingers or becomes extreme it’s called lymph-edema and requires medical attention. This is very frustrating to me me: shouldn’t there be a better way to tell if an organ is healthy or not, than by removing it from the body and chopping it up??  I was told about the possibility of lymphedema, but I didn’t think it would happen to me. I didn’t think breast cancer would happen to me. I still don’t really believe it is happening to me.  I picture being stuck like this, alive, yes, cancer free, but unable to DO anything. Alive, but not able to LIVE.

I am impatient, as you would expect an ungrateful brat to be. At least I am staying in character.

People come up to me to congratulate me on the latest good news, which is that I do not have to take chemotherapy. The results of my tumor biopsy and my blood work show that hormone therapy with tamoxifen will be enough to repel cancer, (unless it gives me cancer which is also a possibility). I want to be happy about not having full scale chemo, and when the doctor tells me, I am relieved, and I celebrate. But once the  bottle of white tablets is sitting on the kitchen counter, the idea of really taking this drug for 10 years fills me with dread. I am already dealing with fluid-filled arms and other medical side effects of the cure — how next will my body be altered? I remember how I felt at the beginning of this process, before every appointment  like hiding under our bed. Now I feel like climbing into my car and driving to Mexico.  I like my body the way it is. I do not want to be altered, even in an effort to save my life.

One night before I say prayers with Owen, I try refocusing my mind on some things I’m grateful for. The temperature is dropping, so I say I am grateful for a home in which to stay warm and cool and dry, no matter what the weather. I am grateful for yummy, interesting food to eat. I am grateful for nurturing care from family members and from friends — for meals and groceries arriving at our door. Loads of laundry washed and folded. For people who care.

Owen leans over and places his hand on my head as I speak these words aloud. I have to smile. It feels like a benediction. The hand of an angel boy on my head. A  mischievous and naughty angel boy  — capable of pilfering snacks from his nephew’s backpack and sneaking off with them — yet who still seems to act on behalf of better, gentler spirits than my own.

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Yesterday I poured out all my frustrations and negativity to my physical therapist Erica. It’s asking a lot from a PT, but she’s a game lady. Maybe I am not the first. Her response was to show me a diagram to explain how the lymph works, how it meshes with the capillaries and yet operates in an entirely different manner from blood. That really helped. I could see this troublesome lymph as beautiful, not stupid and lost, but clever.

And at that moment I made a decision. I will take my tamoxifen for my mom, I decided. I will do everything that imperfect medical science has to offer in her name. Rather than driving to Mexico or hiding under my bed, I can do this for her — because she didn’t make it in her fight against cancer, and I very probably will. So this afternoon, after a certain number of hours of avoidance, I faced down my white tablet of drugs beside the sink. It was surprising and nice to turn around and see her face just then, smiling at me from inside a frame on the kitchen counter. My mom, captured looking joyful and festive in her kitchen, preparing a turkey for a Thanksgiving long ago.

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Thanksgiving Fetishes

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It is early Thanksgiving morning and Owen is celebtating. He has his plastic pieces, and is sitting warm in bed between his dad and mom in a rental home in the snowy Poconos mountains. Lucky guy. Pretty cozy. Even more cozy if he would lie down, so the comforter and blankets would cover his dad’s left shoulder and his mom’s back. However, Owen cannot be convinced. He does not like going back to sleep after his customary 6am, regardless of holiday. It may be that his empty tummy rumbles right up throat-ward. Or it may be that Owen doesn’t like being prone when awake. Logical.

The three of them are pretty content with their compromise, worked out over years. Those who prefer to be horizontal on a dark cold holiday morning are grateful to be lying down. And those who dont prefer it, are resigned to be slouched forward, partially covered. Owen should be grateful to be warm between two heat-producing mammals, crackling his plastic, instead of prowling the icy hallways partially clad – but this may in fact have been his first choice, if consultd. But if he isn’t grateful, well, you cant always get what you want but if you try sometimes you might find you get what ya need.

Snap. Crack.

Crackle. Snap.

Owen is lucky enough to be a member of a very large extended family. This year he joins the tolerant Simons clan, who come together across hundreds of miles every two years celebrate this holiday and have Owen appreciate and rifle through their possessions, and love him anyway. Hopefully all Owen’s admirers are similarly blessed.

Owen’s aunts, uncles, and cousins are used to him and his ways, so when he swipes Uncle Hil’s drink bottle a universal shout of “Owen! You crapster!” will go up and that’s that. They knew him as a fussy little crapster, and as a middle sized crapster, and so the shift to plastic-obssessed young adult crapster isn’t too much of a shock. Those infant episodes, such as when Aunt Alicia startled to feel a small appreciative hand pat-patting its way around her shapely, velveteen clad posterior, have an endearing impact on a relationship otherwise strained by trying to recreate while guarding one’s ginger ale from a relative with an “I came, I saw, I conquered” approach to all plastic products.

Just last week Owen’s mom discovered a dozen eggs rolling about in the refrigerstor bin, with some once-bitten apples, the clear plastic egg crate that held them disappeared. New lows in thievery.

As this Thanksgiving unfolds, there will be much to be grateful for in Owen’s world (mashed rutabega and pecan crunch pumpkin pie!) and there will be things to avoid (even if mom bought all cardboard egg crates). This will be true across this huge and diverse nation of ours – as we come together to celebrate and try not to talk about inflamatory political subjects. Resist the plastic egg crate – or better yet don’t buy one! Do not covet your neighbor’s plastic bottle. And relax and warm yourself between the other heat-radiating mamals. You and Owen are blessed.

Ungrateful

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We were home for Thanksgiving this year – and good thing, since I spent most of the week sick, lying in bed.  I had planned on connecting and creating with my children home for the holidays.  I had planned on building a garden with Edward, and attending a musical downtown, and cooking a few nice meals.  Instead I rested, and scrolled grumpily through people’s FaceBook postings about what they were grateful for, at a loss for what to write.

Owen was having a vegetative week himself, less communicative, less sparkly, and every bit as mulish and early-rising.  I’ve said that I write these postings to share our life with Owen.  I’ve said their purpose is to allow outsiders a peek into what it is that is subtly wonderful about a kind of person and a kind of situation that many regard with sadness or disgust.  This implies that I feel grateful for Owen in my life.

But some days you’re more inspired than others.

As I lay on my bed, scrolling ungratefully through grateful postings of lists of gratefulness, the task of finding my voice this Thanksgiving week seemed harder for the public outpourings.  A little public gratitude goes a long way, I thought.  Even if I could find the right words, what use to throw them into the din?  Perhaps it was just my prone position that made me sour.

Tomorrow my niece gets married to the young man that she adores.  And Owen will be there, to generate inappropriate noises, and fidget, and generally bless the occasion with his presence.  Nothing that he does in such a public setting is likely to be cute, or clever, or to provide any window into his inner Owen.  But we who care for him know an angel lurks there under that unlikely exterior.

And as with the grain of sand and the oyster, the pearl generated is worth the irritation.

Is the oyster grateful?

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P.S. I was extremely grateful for my bed.  Also for my husband, a true partner in times of trial and a good cook.