A Hundred Gs, Part II

January 21, 2011 at 7:57 PM (Family, friends, Help, Karma, Silver Lining) (, , , , , , , , , , , , , )

We ate so many of these it's scary. And delicious.

A Hundred Gs, Part I.

On Thursday night before Christmas, while Mr. Wonderful and I were just settling down to another exciting read of The Deathly Hallows with the cherubs, the doorbell rang. Seven o’clock? On a weeknight? (Good grief, I hope it’s not carolers – usually four or five glöggs into  their celebration, they force you to stand, freezing, in the doorway and smile inanely while they try to remember the words to “Good King Wenceslas”. Erm, sorry — back to the story.)

Mr. W went to open the door, and up the stairs trooped old friends, neighbors, new friends, their families and kids, totaling about ten merrymakers. After hugs and introductions all around, the Organizer, I’ll call her, and her daughter passed me a big folder full of notes and drawings, plus a beautiful, handmade card with a big wad of cash. “What’s this?” I asked.

“We know you already bought your boots, but a bunch of your readers and supporters got together and took up a collection for you, so you have some mad money to have fun with. Buy clothes, books from your reading list, take your boys out for dinner, whatever you want. Just enjoy it,” Ms. O said.

It was a big pile of money, and I was really floored. See, I’m not used to being the center of attention, and I felt very humbled by everyone’s generosity. More hugs all around, and wishes for Happy Holidays, and they were off. I felt very warm and fuzzy as we went to find out what the Dark Lord was up to that night.

It wasn’t until the next morning, during a lull in the packing for our weekend trip to Norman-Rockwell-gorgeous Vermont, that I had time to sit down and really examine the folder full of notes. Not only was there the beautiful card and generous gift from those who gave cash, but there were at least ten more notes, checks, and gift cards from other blog-readers and assorted supporters from all over my life: neighbors, friends-of-friends, college friends I haven’t seen in twenty years, Mr. W’s co-worker friends. I was rendered completely speechless. (And you can imagine how difficult that is.)

My initial reaction was, “I don’t deserve this. I’m going to donate it to Ovations.” Mr. W talked me out of it: he said, “These are people who gave to YOU to help you feel better while you’re feeling horrible. They want you to spend it for yourself, to make you happy. Use it, enjoy it. You deserve it.” I felt guilty, I felt greedy, but I could feel the love in all the notes, heartfelt kids’ drawings, and expressions of uplifting support, so I stopped.

And switched it to gratitude. I know that people who love us, people who read my blog, wish there were something they could do to help me get through this disease. So when the opportunity arises to bring casseroles, Christmas cookies, or donations to the Carcinista Couture Collection, they jump. They help. They get gifts from giving, too. That’s what the whole Christmas-present thing is all about.

Gratitude. I’m full.

With heartfelt thanks to Ms. O and her co-conspirators, The Instigator (BKJ), TLP, TEA, SHB, SM, SMH, KFS, JQP, JBB, H&GP, JPW, JWF, HM, K&RS, DS, and anyone else, in my chemo-brained stupor, I might have missed. You have no idea.

Photo credit here.

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A Hundred Gs, Part I

January 20, 2011 at 4:44 PM (Family, friends, Hair, Happy, Research, Treatment) (, , , , , , , , , , )

Alright, stop harassing me, I’m back.

A couple of items before I jump in:

  1. I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
  2. I hate winter.

The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.

I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.

Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.

Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?

That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)

And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.

Without this two months of feeling better, I might have missed this:

The A-man and his post-bar-fight face.

Tomorrow: Part II.

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Someone Called the Hotline

December 21, 2010 at 6:02 PM (Faith, Family, friends, Treatment, WTF) (, , , , , , , , )

Well, well, well. SOMEONE has been doing their homework, faithful supporters. When I sent out my plea for more focused energy and good wishes, prayers, karma, etc. etc., I must admit I wasn’t expecting such immediate and obvious results!

I arrived at the Brigham today fully expecting to leave with a hole in my back and a bag of pee hanging off my hip, and I wouldn’t be lying to admit that the thing I was most disappointed about is my then-inability to wear skinny jeans tucked into my fabulous new cancer-kicking boots. But I bucked up, since losing a kidney altogether wasn’t really in my game plan either, and plopped in the waiting room to finish a two-week-old People until my buzzer went off.

I was escorted down to the prep area, and asked to wait before changing (into another dynamite johnny/slipper socks ensemble) for someone from Radiology to come talk to me. This wasn’t a surprise; I was expecting just a conversation about conscious sedation or something, so I laid back and closed my eyes for a few.

The cute Radiology doctor came and shook my hand, and told me she’d been on the phone that morning with my urologist, Dr. Kenneth Branagh. It seems that sometime between my 11/19 CT scan, which showed the hydronephrosis (swollen left kidney) that required stenting, and last Wednesday (12/15)’s CT scan, the situation resolved itself. No, for real. The blockage is still in the ureter, which meant that the stent couldn’t go up, but it must not be a complete blockage. There is no swelling of the kidney at all, and my kidney function is totally normal, creatinine at 1.1.

I was so gobsmacked I thought I was being Punk’d. (And, frankly, a visit from Ashton Kutcher really would have been the icing on the cake.) I said, “So, basically, Merry Christmas to me?” And she said, “That’s what your urologist said!” Then after a nurse de-accessed my port, I wandered upstairs to tell my friend/ride that we were free to go, and came home for a Class A, stress-free nap. Bag-free, too. Everyone here at Casa Carcinista is doing a little happy dance tonight.

So what I need to know is, to whom do I send the thank-you note?

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Home Again Home Again

December 24, 2009 at 1:11 PM (Family) (, , , , , , , )

In The Middle Place (you’ve read it, right?), Kelly Corrigan talks about how when she learned of her breast cancer diagnosis (as a young mother of two living in San Francisco), she wanted to race across the country to the house where she was raised, climb into her father’s lap and curl up. I remember feeling exactly the same way when I was first diagnosed. Whether because of my strong relationship with my parents or the remembered childhood comfort associated with the house my family still lives in, there was something visceral about my need to be protected that obliterated my (healthy) marriage, responsibility to my children, or my established life in Massachusetts. I wanted to hop on a plane, leap in my car, lasso a camel, whatever, to get home as quickly as possible and retreat to the insulated cocoon of peace and security that my parents’ house had become in my mind.

To this day, I still hold trips home in a special place, maybe more than your average grown-up-who-lives-elsewhere looks forward to holiday visits. There’s something so familiar (I originally typed “familial” – unintentional but appropriate substitution) about the house, neighborhood, people, stores, that fit neatly in my subconscious in a way that needs no thought… I can get places in my car without thinking about the route; finish or restart old conversations without losing track of the topic; pick paperbacks out of my bookcase and remember having read them years ago.

Of course, there are always the annoyances that I tend to gloss over in my rose-colored haze, the lack of closet space, the same arguments, same family dynamics. Some of this stuff has been going on for so long that I might feel uncomfortable if there were resolutions at this point – how would we know where to seat people if no one were arguing anymore? 

So as you sit down with your families this season, take a moment to think about where you’d go, where you would really want to find yourself, in a moment of crisis. Then take your favorite people and go there. Give them each a hug, eat a big meal, and sleep soundly.

Merry Christmas.

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White Out

December 20, 2009 at 9:51 PM (Energy, mommy guilt, Recovery) (, , , , , , , , )

It snowed here overnight and most of the morning. While I hate being cold, I love snow. Hey, if it’s gotta be freezing, it might as well be pretty. (See, there I go, form over function again.) It felt cathartic, restorative, like wiping last week’s (uuuuugly) slate clean. No more self-recrimination, just quiet and softness.

Spent the morning going to Boston for brunch with my three favorite guys. (Culinary luxury is always a good mood-booster.) Watched the snow blowing up Boylston Street and stuffed myself with eggs benedict and too many carbs. But no guilt. Got the kids set up with some wholesome on-line activities and retired to My Office for a nap while Mr. Wonderful wrapped up the Christmas shopping. Coasted through dinner and took the dog for a walk in the winter wonderland.

Yes, the house still needs vacuuming. Yes, I still need to finish the Christmas cards (cranked out about thirty yesterday) and get more stamps. Yes, I still need to wrap everything. But NO, the self-flagellation for my supposed shortcomings has not continued. I thank the snow.

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Energy Comes Back; Organizing Skills Not So Much

December 18, 2009 at 8:59 PM (Energy, mommy guilt, Recovery) (, , , , , , , , , )

For three-and-a-half years, I said “no”. No volunteering, no Class Mother position, no field-trip chaperoning, no personal projects, minimal cooking, no homemade Christmas presents. I’ve focused on the four people and two pets in the little brown house, and on holding myself together enough for my kids to keep speaking to me and my husband to be able to hold most of the weight of running the household.

Fast-forward to December, 2009. Finally feeling like a human being again, like my brain is firing on all cylinders. Able to keep track of the location of my sunglasses while simultaneously talking on the phone and switching the wet laundry to the dryer, I am getting a little full of myself. So I start saying “yes” – yes, I’d love to edit the school newsletter. Yes, I’d love to bring in a dish to contribute to the second grade’s Country of Origin feast three days before Christmas. Yes, I’d be happy to give the neighbor a ride home from the hospital on a Wednesday night after a support-group meeting and a whirlwind trip to a very crowded Target. Yes, I’d love to make six pounds of spiced walnuts to give as gifts to the teachers and service personnel in our lives. Why sure, I’d love to go to a fundraising dinner on December 17. In formalwear. The evening after a chemo treatment.

And thus a few of the juggled balls have hit the deck. Had to pass off the newsletter to the previous editor because my software skills were exceeded by the amount of work that needed doing. Failed to check with my seven-year-old on the due date of his research project and had to pull him out of bed at 7:50 on a school night to help him finish it. Got all the stuff I needed at Target and the neighbor home from the hospital but then blew parking my land barge in my teeny garage and dented the fender on the support column. Remembered to buy a present for the birthday party but forgot to make a playdate for the other kid for the same afternoon. Made it to the fancy party but blew off my boys all afternoon because I had so much to do before the sitter came that I couldn’t take ten minutes to read a book. Haven’t had time to call my dad back from a call he made to me three weeks ago.

Now I’m realizing that perhaps I’ve bitten off a little more than I can chew. Remembering that even before I got sick, I was maybe not the best multi-tasker on the planet (raging hyperbole). Remembering that this mom thing leaves little room for personal activities and ambitions, and that getting to the gym four times a week might be the pinnacle of my independent activity. Realizing that in my rush to fulfill what I though of as my neglected community obligations I had to put my homefront responsibilities on the back burner.

So I’m making no one happy right now. Family resents the fact that I’m busy. Kids are calling me a grouch. Dog hasn’t been on a real walk in four days. Laundry piling up, dust bunnies multiplying. Christmas spirit cowering in the back of a closet. Wherever I’m focusing, I’m feeling guilty that I’m not working on something else. And I’m afraid that this isn’t going to change as I get healthier; this is the standard modern mom’s dilemma. Crap.

The first thing to do is spend the day with my family NOT stressing about the projects that haven’t gotten done yet. The second thing to do is trim the fat from my obligations list. Or maybe I’ll leave that for the New Year – I really need to finish the Christmas cards. Okay, start the Christmas cards. And call my dad.

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