All knotted up

Posted: November 21, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , | 7 Comments

My favorite girl wants to crochet. She’s pretty crafty and likes doing stuff like that, which is great. Problem is, I’m not so good with the handicrafts. Sitting still and being precise aren’t my forte (hence the slapdash nature of this blog — I have  a thought, I sit at my computer and bang it out; no laboring over every word or nuance. Plus, there’s something about the directions to crafty things that just don’t compute in my brain. Sure, I can read the directions but they make no sense to me.

But my girl wants to learn how to crochet, so I’m going to help her.

I did the rudimentary things necessary for learning a new hobby: bought a how-to book, invested in the basic supplies, and signed her up for a class–crochet 101 the Sunday after Thanksgiving. 

My girl is impatient like her mama, and doesn’t want to wait until next Sunday to learn how to crochet. She wanted to make a scarf and she wanted to make it right then & there. I can respect that.

But I can’t crochet.

Trevor found her a simple video on youtube that helped her get started. She was crocheting up a storm like she’d been doing it her whole life. I was quite amazed. Pretty soon, she had one long chain for her scarf. As my sweet mama used to say, she was cooking with gas. 

When it came time to create the second chain, to make the scarf wider, we were in trouble. The turning stitch is kinda tricky, and neither the book nor the youtube videos were making it click. We were stuck.

My favorite girl wasn’t ready to give up, but she was frustrated. She wanted to keep on crocheting, she just didn’t know how.

I was just sick, absolutely sick at the idea that neither my sweet mama nor my favorite aunt Sophia was still on this Earth to teach my favorite girl how to do a turning stitch. Both of them could crochet like a house on fire. Those ladies cranked out afghans like it was nobody’s business. That gene must skip a generation, though.

There was nothing I wanted more than to call my mom or Aunt Sophia and set up a crochet date for Macy. And if there were still here, I know there’s nothing they would have like more. Instead, my favorite girl and I piled into the car and drove straight to the Sugar Land Yarn Company, a sweet little store full of yarn, knitting needles, patterns, and best of all, crafty women. 

I explained our dilemma to the store owner, who said that she does not crochet. However, we were in luck because on Sundays, they have Afternoon Knitting, where women bring their projects and camp out in the store’s comfy chairs to knit and visit. If I were crafty and had a store that offered such a thing, I’d call it Stitch & Bitch, but these women clearly are much more civilized than I.

The store owner called out to the Afternoon Knitters and one of them, Miss Kathy, kindly volunteered to help my favorite girl with her turning stitch. Miss Kathy made it look easy. She demonstrated several times on two different crochet projects she is working on, and she spent a fair amount of time explaining it to Macy. I could tell by the look in M’s eyes that she wasn’t, getting it, though, and sadly, neither was I. Miss Kathy might have been speaking in tongues for all the sense it made to me.

I think Macy realized that there was a bit more to crocheting than just looping a single chain, and I guess by then she’d gotten enough of the new hobby out of her system and was content to wait until her class to learn the turning stitch. I was ready to head on out and leave the Afternoon Knitters to their projects and conversation, but my girl was lingering.

She watched each of the four knitters with her big, beautiful eyes, noticing the colors of their yarns and the patterns in their projects. She was quiet and still and respectful (good girl!). But there was something else, too — she was peaceful. I would expect most 9-year-old girls to be ready to blow that popsicle stand as soon as it became clear that we had received all the help we were gonna get. I would think most 9-year-old girls could think of a million things they’d rather do than hang out with four strangers who are at least 50 years her senior. The store was quiet and absent any music, TV, or video games, just the regular and rhythmic click of knitting needles. Yet my girl was peaceful in the company of the Afternoon Knitters. She would have stayed all afternoon if I hadn’t shooed her out of there, feeling like an interloper among the skeins of yarn. And she said that once she learns to crochet, she wants to come back and join the Afternoon Knitters.

It hit me then like a ton of bricks — my girl craves the company of a YaYa who died from uterine cancer before Macy could tie her shoes or write her name, and that of her favorite aunt who was swallowed up by glioblastoma in May. I guess neither Macy nor I realized until we barged in on the knitting circle how much she misses their company and their tutelage.

Another startling example of how much cancer steals from us.

I was nearly flattened by the unfairness of it all. It would have been very easy to fall into the abyss of grief, anger, and loss that comes when someone you love–and need–is stolen away by cancer. If not for cancer, my girl would be happily crocheting the day away with beloved family members. I have no doubt she could master the turning stitch under the watchful eye of my mom or aunt. Instead, I have to solicit help from strangers. Instead of enjoying the company and the bonds of one generation teaching the next, I’ll be sending my girl to a class in a hobby shop.

Cancer steals so much.

 

 

Art with attitude

Posted: May 19, 2011 | Author: | Filed under: breast cancer, kids | Tags: , , , , , , , , , , , , | 4 Comments

I saw this artwork somewhere, don’t recall where, and its combative honesty spoke to me.

Big surprise.

As I prepared for Aunt Sophia’s funeral yesterday, thoughts of her sluiced through my brain, like the edge of the ocean lapping at my bare feet.

She would like this artwork. 

I know, I know, artwork like this isn’t everyone’s cup of tea. I like it, but don’t want it plastered all over my house. I do have this in my bathroom, though:

I find it helpful as I go about my daily ablutions, especially on days like yesterday as I made myself presentable for an event I dreaded attending.

No one likes going to funerals. Well, if there are people who do, I don’t get it. There probably are people who like it. If there are “extreme couponers” willing to spend hours preparing for and doing their grocery shopping, I guess it’s possible that there are people who like going to funerals. Yes, I can see how some people need closure, one of the most overused words in the English language. Ok, I can see how some people find comfort in the ritual that envelopes saying that final good-bye to a loved one. I also can see how some people enjoy the socializing that occurs before and after, in which people from near and far come together for a sad and solemn occasion.

But wouldn’t it be nice if we were spending time, good quality time, with our loved one, instead of saying good-bye to them?

I definitely needed an extra surge of power to prepare for Sophia’s funeral. And if that surge comes from a snarky piece of art in my bathroom, I’ll take it. In addition to facing my own demons of funeral-memory-overload from my mom’s event in October 2005, I also had the momentous task of getting my dress-clothes-hating son kitted out in appropriate funeral attire. Not that this task was on par with the Navy Seals taking down Osama bin Laden, by any means, but it was complicated and fraught with peril.

There were multiple-stage negotiations, some of which turned hostile; trial runs and practice fittings; surveillance to be done, and more than one recon mission to procure the necessary supplies to make this task a success.

With supplies gathered from multiple trips between our house and Amy’s house and two trips to Target and with fittings complete despite tricky buttons, we were good to go. My boy had the dress clothes he needed for two occasions. Back-to-back dressing up was torture for him, but like any good soldier, he dug deep and found the resources to stay strong and carry on.

He noted that Aunt Sophia was one of the few people on this Earth for whom he would subject himself to the torture that is dressing up. Not once, but twice, and not spaced out over the passage of time but one day right after the other.

He didn’t want to, but he did it. When I commented that while I know he hates it, he actually looked quite nice, his reply was “Your opinion.”

Ooooooo-k.

Back away slowly from the crazy boy.

As we saw our relatives gathered at the funeral home and then again at the church, I murmured, “Don’t comment on his outfit. Pretend everything is normal.” His smartened-up  look was duly noted but not commented upon, and peace was restored in our little kingdom.

The memorial service the night before the funeral was sad, very sad. But good. Lots of reminders from the priest to remember the good times, to not let our sadness override our happy memories. A whole lot of talk about Sophia being in a better place. While I can’t deny that her being free from the horrors of a brain tumor is a good thing, the “better place” idea is cold comfort to me.

I certainly don’t want her to still be here, suffering and unable to communicate, a prisoner in her uncooperative body. I most definitely don’t want her to be subjected to living a life devoid of independence, something so very important to her. I don’t even want her to have to live in a skilled nursing home instead of her own neat & tidy, cozy home that was so much a part of her.

What I want is for her to still be here, healthy and vibrant, with no trace of glioblastoma or any other disease. What I want is to be sitting at her kitchen table, watching her fold tiropitas as if it’s the easiest thing in the world (and knowing that I’ll be going home with some of those little yummies). What I want is to be in her pool, watching the delight on her face as she presents my kids with their own individual pool floats: a huge, inflated baseball glove for Payton and a hibiscus-flower decorated inner tube for Macy. What I want is to walk into her cool, dark garage, with the musty smell I remember from childhood, to grab a popsicle from the deep freeze. What I want is to be calling her on the phone to tell her we’re having a family party, after the kiddie party, for one of my kids’ birthdays, and to listen to hear volunteer to make the cake. What I want is to see her walk through my door and to hear her say, “Hi, Nance.”

What I want, I guess, is to stop time. To freeze our lively interaction. To halt the passage of time and the acquiring of diseases that rob us of our health, our independence, and our lifestyles.

And while I’m at it, I sure would like to have the same thing for my sweet mama. To have her sitting next to me at Sophia’s table, assuring me that folding the perfect tiropita is easy. Just pinch and seal and brush with melted butter, and the filling won’t leak out during baking. To have her in the pool with my kids and me, mediating their squabble over whose turn it is with the blue pool noodle. To be grabbing her a Diet Coke from the fridge in the musty garage. To hear her voice on the phone, even if it’s the 11th time she’s called me today. To know that she’ll be at the family after-party, scurrying around my  kitchen and telling me how to do a task I’ve done a thousand times, but which she thinks still requires her expertise.

Is that really asking so much?

Apparently so.

Thea Sophia

Posted: May 15, 2011 | Author: | Filed under: breast cancer, cancer fatigue, food, kids | Tags: , , , , , , , , , , | 30 Comments

I can’t believe she’s gone. Even though I knew it was coming, my brain doesn’t want to process it, and my heart sure doesn’t want to accept any more bad news.

My Aunt Sophia died early this morning.

My heart hurts. A world in which Sophia Hontasis Katopodis doesn’t exist is just wrong. Just plain wrong.

Cancer claims another victim. This time it was a Stage IV glioblastoma. Man, I’m so sick of cancer.

Sophia was an incredible woman. The best Greek cook ever. Entertaining was her forte, and she did it up right, every time. She loved having her family gathered around the table for a feast, and every meal was indeed a feast. From the elaborate holiday meals to burgers by the pool, the bounty of Sophia overflowed.

I spent many hours in and around her pool, and when it was time to congregate around one of her two round umbrella tables to eat, it was always good. Not just ok but really good. She was famous for saying, “Come on over to swim. We’ll just have hot dogs.” Those who knew Sophia know that “just” was never part of her culinary plan. “Just hot dogs” meant steamed buns, homemade chili, shredded cheese, diced onion, and homemade ketchup for crying out loud! Good luck finding a better hot dog than hers. Not even at James Coney Island, a Houston institution. Fellow Greeks Tom & James Papadakis started that institution in 1923, and Sophia started her own version in her own home. While she didn’t churn out 30,000 dogs a day like the Papadakis brothers, she knew how to feed her friends & family better than anyone I’ve ever known.

To say that Sophia was a good cook is akin to saying that birds are good at flying. It was so much a part of her, of who she was and the things that were most important to her. Her husband, my Uncle Bill, could never match her in the cooking skills, but he was a great host, and so they made a fantastic pair. Uncle Bill could not rest until his guests had something to eat and/or drink.

Everyone in the neighborhood knew Sophia, and she continued to add new friends to her already-bulging group, well into her 80s. One of her neighbors befriended an Irish guy from work named Mickey. Mickey and his wife Jean would come to Houston a couple times a year, and they got to know Sophia. Mickey & Jean brought their kids to Houston, and of course Sophia had a pool party and laid out a fantastic meal. My kids had a blast getting to know Ian and Aoibhinn. Leave it to Sophia to have friends around the globe who loved hanging out in her backyard.
One of the most amazing things about Sophia was a decision she made a long, long time ago. Uncle Bill was married to a woman named Ann, who was much beloved by everyone. This was before my time, so I never knew Ann, but have heard this story many, many times and continue to be blown away by it.

Ann & Sophia were best friends. Young Greek women who walked the fine line between preserving the way of life brought over from the old country while assimilating to the American way. Ann and Bill had 4 kids, 2 boys and 2 girls, and were happily raising a family together. Tragedy struck, as it is wont to do, when Ann contracted an illness that proved to be uncurable. The story I’ve always heard was that it was Mediterranean anemia, and in the early 1950s medical care was not what it is today, and Ann knew she was not going to survive her illness.

Sophia was unmarried, and Ann asked her best friend if she would please marry Bill and raise her children after she died.

And that’s just what Sophia did.

She took on 4 kids ranging in age from teenager to preschooler, and she became their mama. She and Bill were married 40-some years when he died 11 years ago. A fiercely independent widow, she missed her husband but lived her life to the fullest. She treasured her family, and being surrounded by her kids and her grandkids was one of her greatest joys.

Sophia was the kind of mama who cooked from scratch, ran a ship-shape house, and sewed her daughters’ wedding dresses. She was amazing.

When my own sweet mama joined the Katapodis family, Sophia took the non-Greek under her wing and taught her some things, including the art of Greek cooking. That my mom, a “white woman,” (aka non-Greek) mastered that art and was every bit as good as the ladies from the old country was a huge source of pride. For everyone involved.

One of the best things Sophia taught my mom to make is tiropitas. The recipe itself is quite simple, but the filling and folding of the buttery, flaky triangles is something that requires patience and practice. My mom exercised both, and her tiropitas were every bit as good as Sophia’s. My dear aunt would make a batch, put them in a big tupperware in the freezer, and give them to me to have on hand for dinner parties or casual entertaining. What a gold mine I had, tucked away in the freezer. Knowing that I could pull out a few or several dozen, put them on a cookie sheet and bake at 350 for 15 minutes was something that filled my soul.

Another one of Sophia’s specialties is Avgolemono, which is Greek chicken soup. I was raised on this soup, and hers was terrific. In Greek, “ovgo” means egg, and “lemono” means lemon, so you can guess where this is going. Instead of a bland-ish chicken soup with noodles, Avgolemono is thick and lemony and full of rice or broken spaghetti. Sophia made me several pots of it when I was recovering from my mastectomy, and because she knew I didn’t eat meat, she’d put the chicken on the side, just in case I changed my mind.

Sophia was suspicious of anyone not eating meat, and one of my favorite Sophia stories concerns just that. We were going to her house one time for dinner, and while discussing the details on the phone she said she was making pork loin or whatever, and realized that I wouldn’t eat it. She said, “Oh, yeah, you don’t eat meat. I’ll make you some chicken.” I said, “Uh, chicken is meat.” Her reply? “No it isn’t, it’s a bird.”

She was also suspicious of sunscreen, and I think she thought it was a made-up product. She’d been out in the sun by her pool in Houston for 40 years, and never used sunscreen. She also had the most beautiful skin. Period. No lines, no wrinkles. No fair. 

I learned to swim in her pool when I was tiny. She taught all the kids in our family to swim. She loved the pool and was in it all the time. All the kids loved her pool, because it was huge and it had a diving board. One of the family stories often repeated is the one about me crawling on the diving board as a wee child, before Sophia taught me to swim. In typical me fashion, I got too close to the edge–I pushed the envelope even then, before I knew what it meant to do that. I fell in the deep end, and my brother John jumped in and saved me. Good times, good times.

Sophia loved my  kids a lot, and was always doing something sweet for them. She and Macy had a mail correspondence for a while, mailing things back and forth. When it started, Macy was 3 and her mail consisted of scribbles on a piece of paper. Sophia was always getting stickers and note pads in the mail from charities she supported, and she loved to pass the “junk” as she called it onto Macy. In fact, Macy has a whole drawer in her desk full of Sophia’s “junk” and she treasures it. Every time we saw Sophia, she had a bag of “junk” for Macy. 

Occasions like Halloween and Valentine’s Day were another opportunity for Sophia to stay connected with Payton and Macy. She always sent a card to them for these lesser holidays, along with a $5 bill.

She gave great gifts, and my kids always looked forward to opening their birthday or Christmas gifts from Aunt Sophia. I don’t remember exactly what this gift was, but as evidenced by the look on Pay’s face, his Aunt Sophia scored.What I love about this photo is not the intake of breath by Macy as she prepared to blow out her birthday candles, but the pair of hands on the right. Sophia’s hands. She had a font-row seat to Macy’s birthday fun.

Sophia loved to bake, and she made my kids an Easter cake each year. Being the thoughtful and overachieving person she was, she would make individual cakes.The decorations were always on the fancy side, and the cakes were always scrumptious.Nice smile, Pay. I’m guessing he was impatient to dig into that fantasticly-yummy-looking cake.After the Easter cakes were consumed, there would be an egg hunt, and Sophia bought the good candy. No jelly beans for her; she favored chocolate. And lots of it. Same for Halloween. She made individual goodie bags full of the good candy for the trick-or-treaters who rang her doorbell. Lucky kids.

My kids weren’t the only ones who loved her cakes. One year Payton requested her special chocolate cake (with tons of chocolate frosting) for his birthday, and our friends Laura and Russ celebrated with us. Russ fell head-over-heels for Sophia’s cake, and when his own birthday rolled around, he requested a chocolate cake from Sophia. Of course Sophia was happy to oblige.

Sophia was so generous. One time at her house, Macy mentioned that she liked a particular plant in Sophia’s yard. She insisted on giving Macy a cutting,and it wasn’t a small clipping. When we lived in Austin, before either Payton or Macy was born, she sent me several Hefty bags full of plants that had been dug up at her house. She knew that our new  house in Austin had a huge yard, and instead of throwing the Monkey grass out, she passed it on to me. She did the same with her blue plumbago once we moved into our current house.

Glioblastoma is a particularly nasty form of cancer, and it just makes me sick that this is what Sophia got. It’s the most aggressive form of brain cancer, which is bad enough, and it’s very difficult to treat, for several reasons: it’s resistant to conventional therapies, the brain can be damaged by conventional therapies, the brain has limited capacity to repair itself, and it’s difficult for drugs to cross the blood-brain barrier and get to the tumor.

As if that’s not shitty enough, glioblastoma also affects the part of the brain that makes us who we are as individuals. Thus, when glioblastoma invades, its victim’s personality changes, and the person becomes quiet and no longer reacts as she has in the past. For someone like Sophia, who was very opinionated and passionate, this is a crying shame. Being in her presence without her talking, smiling, or asking questions was a hard thing to stomach. Our frontal lobes control so much, yet are the most vulnerable. Most of the TBIs involve damage to the frontal lobes. The fact that the frontal lobes make up so much of who we are as individuals, when something goes wonky with them, the result is overwhelmingly bad. I’ll never forget Sophia weeping at my mom’s funeral, 5 years ago. Just as many people will be doing for her on Tuesday. Reminds me of one of my favorite quotes from Kahlil Gibran. I received a copy of his book The Prophet when my mom died, and it took me a long time to get to the point in which I was ready to read it. I’m so glad I did, though, because his words bring comfort in times of great sorrow:

“When you are sorrowful, look again in your heart and you shall see that in truth you are weeping for that which has been your delight.”

Thea Sophia, you are indeed a delight, and will remain so forever in my heart. While I’m glad that your suffering is over, I know that mine is just beginning. We’ll never forget you.


One more thing to worry us

Posted: January 28, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , | 2 Comments

Because breast cancer survivors don’t have enough to worry about, now there’s this: the FDA reported that women with breast implants have a small but slightly increased risk of developing anaplastic large cell lymphoma (ALCL), a rare disease typically affecting 3 out of 100 million women.

While ALCL is rare, it seems that women with implants may have a “very small but increased risk of developing the disease in the scar capsule adjacent to the implant.” ALCL is a cancer involving cells of the immune system, which scars the fool out of me.  Scarier still is that this immune system cancer can appear anywhere in the body. ALCL is not breast cancer, but it can show up there, or anywhere else. Thankfully it is very rare: 1 in 500,000 women a year in the United States, and it’s even more rare to develop ALCL in the breast (3 in 100 million). Whew!

And while all women with implants could be at risk, whether their implants are for reconstruction or recreation, for the purpose of this post, I’m going to focus on breast cancer survivors who have implants.

WTH???

Really?? After surviving breast cancer, enduring reconstruction and getting on with life, we also have to worry about this? You’d like to think (at least I would) that as a cancer survivor, you’ve suffered enough (I know I have). But apparently there’s no end to the the amount of suffering spewed by the dreaded cancer.

I’m so sick of cancer.

One of my bookclub buddies, herself an 11-year breast cancer survivor, just had to make a quick run to Alabama to visit her “surrogate mom” at the lake who appears to be losing her cancer battle.

My beloved aunt is recovering from surgery last week to remove part of a stage IV glioblastoma. I don’t even need to tell y’all how bad a stage IV glio is. Get well soon, Thea Sophia.

I saw a story on the Today Show about a 3-year-old girl who had a mastectomy (yes, you read that right, she was t-h-r-e-e years old) for a rare but early-striking form of breast cancer.

My tennis teammate and dear friend who endured diagnosis and a double mastectomy and has completed 5 of her 6 chemo treatments is battling hard, and she is an admirable warrior. This stupid disease has changed her body and robbed her of tennis for all these months. It’s forced her to live way outside of her comfort zone and to learn lessons she’d rather remain ignorant of, all the while still driving carpool, making dinner, overseeing homework, and keeping the household running. The battle has taken a lot out of her, but she still has a lot of fight left in her. And she looks amazingly beautiful in her sassy headscarf. Chemo may have taken her hair and has tried to commandeer her brain, but it can’t take away her smile and her fortitude.

I miss my mom every single day, and every single day I curse the wretched disease that took her life, too young and too soon. I could write all day and all night and not run out of things I miss about her. Stupid cancer.

Then there’s my own cancer battle.

I’m not a candidate for implants myself, since the post-mastectomy infection that snaked through my chest wall took its pound of flesh from the right side. I thought I was getting the short end of the stick by having to endure a much more complicated surgery and recovery than that required for implants. Perhaps I was wrong. Although who knows what the FDA will find as risky for breast cancer survivors who opt for different reconstruction methods. We can’t win for trying.

The good news is that I do indeed have a surgery date (gulp). My impatience, which I blogged about on Monday, paid off, so all those naysayers out there who were going to tell me that good things come to those who wait can shut it. Thank you.

Sonia, Dr Spiegel’s nurse, called me Tuesday morning to tell me that Dr Spiegel and Dr S had a meeting of the minds and found a date that works for both of them. Gulp.

It’s March 2nd.

Texas Independence Day. My cousin Ross’s birthday (hey, cuz). Also celebrating birthdays on that day: Dr Seuss, Sam Houston, and Reggie Bush. Oh, and my new boobs.