Posts Tagged breast cancer

Part 2 of 3 – Christmas Past, Present & Future

*Scroll down for Part 1 of 3.

It’s a weird place in which I find myself these days. I’m relieved, but worried, but not too worried about our financial well-being. I’m missing my mother (always), but I find myself enjoying Christmas for the first time in three years. I actually went Christmas shopping. Yep, the Grinch came out of her cave and walked into an actual store & purchased actual Christmas gifts. Without snarling or cursing even one time.  The Christmas shit everywhere isn’t making me angry & bitter this year…. Bobby and I put up a tree, and I’ve decorated our mantel & dining room table, and am typing right this minute by the light of our lovely Christmas tree.

Why the change, you (& Bobby) ask? When Sue was home for Thanksgiving, she said something that pierced my little Grinchy heart — that one of the things she hates most about Christmas is going to her friends’ houses, where there are lots of gifts under the tree and she’s reminded of how much our family has lost/is losing. As obvious as it may seem, I suddenly realized that Sue is still a child in lots of ways. While I genuinely don’t miss the Christmas gifts, she DOES. Light-bulb moment. So this year, Sue’s gonna have gifts under the tree. Not expensive gifts, or big, earth-shattering gifts, but she’s going to have presents to open on Christmas morning. Cancer has taken enough of her childhood — it’s not going to continue to make trips to her “normal” friends’ houses more painful than they have to be.

Generally speaking, the holidays make me feel even less normal than usual. The commercials, the cheeriness, the happy family talk… there’s an implied pressure to feel & act a certain way. It’s easy to see why people become (more) depressed during the holiday season. Which is why I openly declared my Grinchiness during Christmas 2007 (much to the dismay of my then-coworkers). Sometimes it just takes too much effort to pretend.

I was in a very dark place this time two years ago (click here for post). A very, very dark place. If nothing else, this blog has helped document the fact that I am indeed improving.

And although I’m noticeably less bitter this year, it’s still hard. I don’t think Christmas will ever not be hard. Yesterday, I subbed with a lady who’s about Mama’s age. She was chattering about her children, her new grandbaby that’s on the way, shopping for their gifts, going to the Christmas parade, how much she’s looking forward to having them all at her house on Christmas Eve. It’s hard, ya’ll. It’s hard to listen with a neutral, interested expression on my face, and act like her words aren’t causing me pain. Listening to her talk is a glimpse into what would have been, and I find myself shying away from letting my brain go down that path. There’s no point in even thinking about how it would have been. There’s no point. So I smile & nod & try not to let her words go beyond my ears into my brain.

I can say that from where I am this very minute, Christmas Present resembles what the “new normal” will be more closely than 2006, 07, or 08 did. Finding a new normal isn’t something that happens in one year or even two years… I remember people talking about “the new normal” like it’s a destination to be reached, which is completely misleading. It’s year three, and I’m just now beginning to see a glimpse of Christmas Future.

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email to Susan G. Komen

I am requesting that my mailing address and all other information  be removed from your mailing list. My mailing address is ——-. I vehemently disagree with the monetizing of a killing disease, and I feel that the Komen organization has played a primary role is the “pink-washing” of our retail markets. This month marks the 26th month since my mother died of metastatic breast cancer, and I don’t need to give money to your marketing and fundraising efforts in order to remember her. I remember her minute of every day without the help of your mailings that state “Because every holiday is precious…” Trust me, I’m fully aware that every holiday is precious, and that my mother will not be here for any of them for the rest of my life.
Thank you for immediately removing me from your database.
Sarah

P.S. Fuck Komen and your little cutesy pink ribbon holiday labels.

[And no, I didn't add the PS to my email to Komen... I saved that just for my blog. You're welcome. I hate those pink fuckers. Especially this time of year.]

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a separate identity

There are many stupid things that people have said (and continue to say) to me after Mama died… things like “everything happens for a reason,” “God never gives us more than we can handle” (for a full-fledged rant on this one, click here), and “Now your mama is your guardian angel.” There’s one in particular, though, that actually has proven to be appropriate…  “something good will come of this.”  This one’s especially hard to hear when your hurt and loss is still so open and raw. Something good coming from this gaping hole that used to be me? Um, I don’t think so.

But now, two years later, I find myself thinking that amazingly enough, a few of those platitude-spewing people were right on the money.

Here’s the thing. I do NOT think that God took my mother for a reason. I don’t think that God took my mother at all. Cancer took my mother. But when things go awry (as is always the case with cancer), positive changes can result eventually. EVENTUALLY, not immediately. It took me two years + two weeks to even see this small glimmer.

The glimmer is this — losing my mother has allowed me to become a person that I wouldn’t have been otherwise.

During a conversation with my sister last night (our first in months), she said, “Mama made us alike.”

And she’s right. Mama did. It wasn’t like she forced us, or insisted… no, not at all. It’s just that my mother’s presence was so strong, so passionate, that we adjusted to allow for the huge force that she was. She gave us a moral value system and a sense of home. But what she DIDN’T give us was options. We, mostly Jennifer & I, parroted so many of her views and her perceptions, and we really, truly THOUGHT they were our views and perceptions.

This is not to say that my mother was a dictator or overbearing or a bad mom. She was the polar opposite. What I’m talking about is common among many mothers & daughters I know. She teaches you how to keep a tidy house. She teaches you to wash your hair and shave your legs. She teaches you what’s right and wrong. And her own perceptions & ideas get all mixed up in that, so that you become, in a sense, a mirror of her. How many times have we thought or said some version of this thought: “My mama’s way is the right way”? I think that’s why many women find their mother-in-laws oppressive… because they’re NOT our mother. When we hit college, we branch out on some topics like politics, religion, or we might even date someone our mothers don’t approve of just to assert our independence. But underneath, the voice of our mothers are still there, throwing in their $0.2 on every single decision.

Then my mother died, and I had to learn how to be a separate identity. It’s something I would have never, ever chosen, but it wasn’t optional. Is this separate identity an altogether new creation? Or is it a version of myself that was always inside, and I just had no reason or inclination to let her come to the surface? Probably a combination of the two.

My separate identity has pierced ears.

She never goes home to Townville. Why? Because she doesn’t want to.  Mama’s not there, so why bother?

She learns cooking, and sewing, and countless other household tasks from the internet because there’s no mother here to teach her the “right” way to do it.

She has joined a church, which she would not have done if her mother was still here, and she is becoming more and more active with that church & its people.

She doesn’t go shopping anymore because her shopping buddy isn’t here, and she doesn’t even miss it (the shopping, not the buddy).

She is more independent, and becoming more so everyday.

Validation from family is no longer a necessary step in her decision-making process.

She now understands the concept of grace, and knows that following the rules of legalism actually has no impact on her spiritual outcome — thus the meaning of grace.

My separate identity is also more cynical, less compassionate, and more out-spoken.

She’s smarter than the old Sarah, and I respect her more because she had to go through hell to get here.

I no longer have the option of being my Mama’s little girl. I miss it every single day. I don’t think there will ever be a time that there’s not a lost little girl inside crying for her mother. But I’m finally – FINALLY – starting to see a glimmer of the good that’s happening because of this tragedy.

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September 17th

I sit here surrounded by the contents of my “Mama Box” — a beautiful box that I’ve stuffed anything death- or cancer-related. I’ve never gone through the box… today is the first time. I’ve only opened it just wide enough to slide a new memento in.

There are sympathy cards that I read for the first time today. Some are generic and simple, some contain hand-written condolences, some even include stories. My favorite card came several months after Mama’s death from one of her best friends. It’s a long, chatty recounting of what Mama’s friendship meant (and means) to her — the trinkets that Mama bought her over the years, the shopping trips they went on, the first time they met, when this sweet lady thought, “She has great friendship potential.”

There are cd’s of MRI’s and CT scans from three difference cancer centers… we were so determined to find someone who would give us hope. There are lab reports — the final one, dated Aug 13, 2007, says “Evidence of extensive progression of metastatic disease involving the lungs, liver, and bones diffusely.” And that was a week before they found it in her brain as well.

There are leftover invitations to Mama’s 50 birthday party in April 2007. We had to have it early because we were going to Duke’s Cancer Center on her actual 50th birthday, on May 1.There are a few pictures of that day — she’s wearing her favorite pink dress, the one we chose to bury her in, the one her body is still wearing in the cemetery of Town.ville Bap.tist Church.

There’s a pink enamel butterfly pin that Jennifer and I bought her in the Duke Cancer Center gift shop. It became a favorite, and she wore it on her linen dresses often during the following months.

There’s the luminary bag that I decorated for the 2005 Relay for Life in Charlotte, NC, when we thought cancer was behind us. It reads, “In Honor of Denise. We’re so proud of you, Mama! Love, Sarah, Jennifer, & Susanna” She was so, so proud when she participated in the Survivor Lap, and we watched her walked by and cheered.

There’s a silver charm from Jennifer’s wedding in 2006. At her bridal luncheon, we did a “charm cake” where each attendant has a charm with a fortune attached to it. I did all the charms except my own, which Mama said she would take care of so that it would be a surprise. Mine is a tiny baby carriage, with the attached fortune: “A Baby Carriage for Sarah. A baby carriage is coming your way with a sweet little bundle to light up your day…”  So much pain and regret I have that I waited to start this baby process.

There are pink ribbon items, so many I can’t count. Bracelets and pins, all with the pink ribbon. People wanted to show support, to show that they were thinking about me. They didn’t know that the pink ribbon makes me want to vomit.

There’s a program from her funeral, along with the beautifully haunting pictures that Tiffiney took. It seemed like we put so much time into that program, selecting the perfect poem, the perfect hymns, the perfect people to be a part of the service. Yet I realize now that it was only a few hours during those blurry days from Sept 17 to Sept 20th, when the funeral took place.

There are notes written in Bobby’s handwriting… people to call, phone numbers, his contacts at the funeral home. I didn’t realize how much Bobby did during those wretched days.

There’s a pretty fabric-bound journal. On the inside cover is Mama’s neat, small handwriting. It’s dated Dec 12, 2006, just a few days after we received a prognosis of 18 months to 3 years. It says:

Sarah, who I’ve loved the longest,
We ARE thankful for the time we have been given — and will receive! We have incredible happiness in our futures. “Weeping may endure for a night, but joy comes in the morning.”
I love you with all my heart!
Mama

Wrapped in a piece of white tissue paper are her eyeglasses. We kept them instead of sending them down into the ground with her body.

There are hand-drawn sketches of her gravestone that I did to show the gravestone guy.

And the business cards of oncologists, and triage nurses, and office staff.

A copy of her online obituary.

A copy of the FMLA paperwork so that I could take medical leave after the brain metastasis diagnosis.

Her toothbrush that I kept at my house with her name on it.

And there’s a children’s book called “Someday.” We found three copies in her room afterward, and knew that she meant them for us. If you have a daughter, you should consider buying this book for her. It’s lovely.

I hope to read it to my own daughter one day.

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Two years ago today

Before September 17, 2007:

family in charleston copy

After September 17, 2007:

IMG_5787-crop

Sometimes it seems like more than I can bear.

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i hate september

Does anyone else ever look around and think “Is this really my life? How did I get here?” I don’t really mean that in a negative way… just more of a pondering sort of way. I feel surprised sometimes — even though I know I’ve been here the whole time, it occasionally often feels like where I am now just snuck up on me.

September weighs heavily. Every day becomes a mental montage of “this day two years ago, [fill in blank here].” There’s a feeling of disbelief. HOW can I still be here, still be breathing and functioning normally, two years after losing Mama? It feels like a betrayal of her, like she wasn’t as important as she should have been, if I can live two years without her. This is permanent. This is real. She’s really gone. And today a year from now, I’ll be saying “it’s been three years.”  And then five years, and then 12, and then 18. And she’ll become dimmer and more abstract, part of my past with no place in the future. I wish I could drag my feet and make time move slower — every day that passes puts me farther away from her.

She’s so far away now. I can’t remember the last time I felt her presence. I wonder if she thinks of me as often as I think of her. Somehow, I doubt it.

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new day, new plan

After a good night’s sleep & lots of pondering, I made an appt with a 3rd RE today. I’m not officially breaking up with Doctor-Man, but I feel compelled to check this other guy out.  His name seems to be popping up all over the place, and as a believer in signs, I don’t feel right about ignoring it.  And this new place was able to work us in next week, so Tuesday, Sept 8th is the (next) big day. I’m still going to get my blood work done this week according to Doctor-Man’s plan, though. I’m operating as if I’m staying with him… I figure he won’t know I cheated on him, right?

And the whole genetic testing thing… yeah. I managed to casually ask Daddy if Mama was tested for the BRCA gene. She wasn’t. Which means that a more intensive genetic testing would be necessary to determine if I’m a carrier. Which would be astronomically expensive.

Bottom line is this: I want to have a baby. I don’t want our having a baby to depend on my genetic “purity.” I went to Doctor-Man for his expertise in infertility, NOT genetics. And although I understand that genetics are crucially important in this baby-making process, I am not going to allow the BRCA gene to play a major role in how/when I get pregnant.

Breast cancer has taken enough from me… it’s not taking this too.

I don’t want to know if I’m a BRCA carrier. Call it denial, call me an ostrich sticking my head in the sand, but I don’t. I decided a year ago not to do the BRCA testing, and I’m still pretty dang sure that that was the right decision. While a negative result would be a relief, a positive result would be devastating. It would change everything — how I live, whether I would even want children (because who wants to intentionally reproduce another to-be-motherless kiddo?), wondering if every day is *the day* that I’ll be diagnosed. And the whole preventative mastectomy, ovarian removal, blahblahblah — I’m 31 yrs old and trying desperately to have a family, Doctor-Man. Please don’t introduce any more trauma into my life right now. K, thanks.

And before I leave this topic behind, I’m just not sure I’m comfortable with “genetic selection.” Basically, he would biopsy each embryo and only use the “desirable” ones — the ones without BRCA or cystic fibrosis or Down’s Syndrome. Kinda like a drive-through… yes, I would like a male honor roll student, brown hair, blue eyes, with a side of athletic ability. Hold the defects, please. I know that IVF involves selection… obviously you can’t use all embryos all the time. But selection based on embryonic development, or likelihood to survive, seems more natural than the mentality of “oh, throw that one back, it has the BRCA gene. It’s not worthy.”

We’ll see. I’m hoping that seeing this 3rd guy will help me know for sure whether Doctor-Man is the right RE for me.

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“touched by something extra”

The horror of yesterday is fading, thankfully. Once I picked myself up off the floor of Mama’s room, the remainder of the day was a fog… too drained to feel much of anything. Stopped at the grocery store on the way home and bought beer and frosted sugar cookies — yes, that’s what we called emotional eating at its finest. Watched mindless tv until I fell asleep amidst my cookies crumbs. I’ll have to change the sheets before Bobby gets home to hide the evidence.

I’ve been told that I would love the movie “Big Fish,” but I’ve purposefully avoided it. Something about the reviews made me think that it’s not a movie to watch casually. By sheer coincidence (if you believe in coincidence), it arrived this week compliments of Netflix. I watched it this afternoon, and what perfect timing. It’s one of the most beautiful representations of living (and dying) that I’ve ever seen. The final scene filled my heart with joy while tears rained down, because it reminded me of what death really is for someone who has touched the lives of others. The son carries his father down an embankment to the river, while all the people of his father’s life, the people from his stories, are standing there on the bank to say goodbye. They’re waving and smiling with love and appreciation for his father’s life. The son, who narrates the movie, says:

“And the strange thing is there’s not a sad face to be found. Everyone’s just so glad to see you, and send you off right… You become what you always were.”

And I was comforted, remembering that the horrific, nightmarish details of Mama’s death are insignificant in her very big, very colorful, very vibrant life. She was an extraordinary lady, and her story is so much larger than a blood-stained nightgown and a bag full of gut-wrenching memories. I’m grateful that my mother was the kind of woman who had many friends on the riverbank, waving and smiling as we sent her off.

I only hope that I can capture enough, communicate enough, tell enough stories, so that my children and their children will know her as well.

“There are some fish that cannot be caught. It’s not that they’re faster or stronger then the other fish. They’re just touched by something extra.”  –  Big Fish

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so, so hard

Here I sit in the floor of Mama’s room, surrounded by boxes of her neatly folded clothing. I started with the closet… pulled each item out, laid it on the bed and took a picture so I’ll remember. Sort them according to dressy clothes, teacher clothes, and casual clothes, folded them all, and stacked them into their respective boxes. The process was going rather smoothly overall – a few tears triggered by a sleeve still turned inside out from the last time she wore it, or a linen dress with the wrinkles that evidence recent wear, like she only took it off yesterday.

As I pulled the last couple of items from the closet, I noticed a bag on the floor that had been tucked in behind her hanging dresses. I knew what it was. I knew, and I stood there and stared at it like I would a poisonous snake. I told myself I shouldn’t open it, that nothing would be accomplished by opening it. But I did. I opened it.

Inside was the nightgown my mother was wearing when she died. There are two small dark brown spots on the front, blood from where she bit her tongue during the seizures that came immediately before her death. Dark, curly hair still clings to the back of the gown. There’s a lavender knit cap as well. I remember pulling it from her drawer as the hospice and funeral home attendants were ushering us from her room. I handed it to Hospice Jo and told her to please put it on Mama, because her hair was coming out so easily during those last few weeks, and I didn’t want careless handling to cause any more hair loss. The knit cap has a thin layer of dark, curly hair inside, and more dried blood spots. I don’t know where that blood came from. There’s a wide-tooth comb and two small hair clips – items that we took to the funeral home during the preparation to do Mama’s hair. I insisted that I be the one to do her hair… during her final month or so, she would only let me comb it because I was gentle and didn’t pull it out.

And in the bottom of the bag, there’s an ivory sheet. I pulled it out, assuming that it was the funeral home sheet that they placed over bodies before they take them out of the home. I unfolded it, and realized that it’s a sheet out of our family’s linen closet. It belongs to a set of sheets that Mama and Daddy had used on their bed for as long as I could remember. Who got that sheet out of the linen closet that night? Was it someone we knew, a family member or friend? Or was it Hospice Jo? Or one of the solemn, faceless men from the funeral home? I don’t know. I was in Susanna’s room, huddled in the floor. Listening to the strange voices outside, knowing that they were there to remove my mother’s body. Seeing the shadows pass by the door and knowing what that meant. Hearing hushed whispers and a commotion of movement, which I was later told was because the stretcher barely fit through the hallway door. But somewhere along the way, someone pulled a sheet from the linen closet and laid it over my mama’s body.

And now that sheet is here, in my lap. How do I keep going?

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blahblahblah

I’ve been an utter blob for two days now. Car’s still in the shop (hey, $600 worth of repairs takes a while, apparently) so I’ve been somewhat stranded. Of course, there’s always cleaning the house or doing laundry, neither of which require a car, but I choose to use my car-less state as an excuse.

I need to call my grandmother. I can feel the mad vibe coming at me (us) all the way from Virginia, and I know that I need to just suck it up and dial the number already. Don’t wanna. She’s going to want to talk about evil cousin’s baby, and I don’t want to.

I told myself that I can’t get pregnant again until I meet my goal weight. I don’t want to have any obvious reason to blame myself if I have another miscarriage… I’m sure I’ll be able to come up with some other reason, but being overweight shouldn’t be one of them. I’ve been dedicatedly taking my vitamins every night — a regimen of prenatal, low-dose aspirin, B6, B12, folic acid, and zoloft (not a vitamin, but crucially important nonetheless). I think I may be purposefully delaying getting pregnant again. Moving on.

Daddy just called me and told me that Bobby and I need to have life insurance. He expounded on how great his life insurance company is, and how they’re “low pressure,” and we should have them come to our house (not), and how he just took out a $65k policy on Sue for only $15 per month. Well, yeah, she’s a completely healthy 21-yr-old… why WOULD a life insurance policy for her be expensive?!? And is it just me, or is taking a $65k policy out on your youngest daughter just kinda morbid?

And speaking of Sue… she’s been sharing her education with me here lately. Just this week, I’ve proofread an analysis of Than Shwe’s dictatorship of Berma and an explication of Trent Reznor’s personal grief as seen through his song “The Day The World Went Away.” Gonna be a long four years, people.

I live within a mile of a small, lovely, very expensive private college. Last week, an 18-yr-old student was abducted and raped while walking from the student parking lot. The entire town (especially the ones on this side) flew into a tizzy, talking about neighborhood safety, police presence, crime activity, etc. In online comments, my neighborhood was even referred to as a “crack den.” Two days later, the girl retracted her claim and said that she made it all up. Nice, huh? So now she’s been charged with making a false police report, and she’s in jail because her parents haven’t posted her bail. They send her to a $30k/year school, yet they’re going to leave her sitting in jail? I have mixed feelings about this… yes, I’m angry that she would tell such a horrible lie because it makes it exponentially more difficult for REAL victims. But I also wonder what’s beneath the surface? What’s going on in this girl’s life that would make her do this? In true stalker fashion, I found her on Facebook… am I a sucker because I feel sorry for her?

But then there’s this woman who claimed she had breast cancer. She took it to ridiculous extremes — shaved her head, pretended to go to treatments, took advantage of the charity and goodwill of everyone she knew. And it was all a sham… she had actually already pretended the same thing in another town, at another school. And this story made me VERY angry and I don’t feel even an ounce of sympathy for her on any level. Why do I feel sympathy for the student and not for the woman? Is it because of their ages?… the girl’s only 18, so maybe I can excuse her behaviour as (extremely) bad judgment or a misguided cry for help. Or maybe it’s because I’ve experienced breast cancer firsthand, and the idea of someone PRETENDING to go through what thousands of women endure daily is just revolting. But if I were a rape victim, would I feel the same way about the girl? I don’t even know why I’m thinking about this.

Ok, I’ll conclude my brain dump at this time. The end.

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