Friday, June 20, 2008

Laughter, Tears, Quilts, and My Crazy Roller Coaster

Yesterday's chemo day was uneventful save for the fact that I felt like I was having a manic depressive mood swing all day. I began the day manic, laughing entirely too hard at my own jokes on the way down and singing outrageously loud to U2. I then got to chemo, saw Kathy, the nurse practitioner who works with all the docs at Rocky Mountain Cancer Centers, during which time she sort of had to refamiliarize herself with me. As I processed this later, I realize that something that really "offs" me is when I feel faceless, nameless, or have only a perfunctory relationship with someone with whom, for reasons of sheer necessity, I'm required to interact with on a regular basis.

Herein you get a picture to my beautiful mind: I realize that the part of my self that still functions as a child--needy and craving approval and notice--flounders and fusses when these ego-centric "needs" go unfulfilled, sometimes even by strangers from whom such attention is usually unnecessary and mostly inappropriate. The adult me reasons that doctors and nurse practitioners and their like necessarily, to maintain their own sanity, must not become entangled in personal relationships, and that this is an appropriate setup. The little girl me doesn't like it any better, for all its logic. Clark jokes with me often that I wouldn't be happy with a doctor unless he invited me over to his house for a barbecue with his family. He's right.

So once I started chemo, it was quiet--we had eschewed visitors in an attempt to carve out some down time. With the absence of people around--which both distract me and also keep me from needed times to decompress and feel my feelings, along with the inevitable low of coming back from vacation--I fell apart. We have also received, thus far, inconclusive results to the bone biopsy, and having gone through such a trauma to get what we'd hoped would be more information, I felt deflated. Also, stepping back from an idyllic, forgetful existence into the harsh world of cancer (yes, I'm being redundant--deal with it) tends to put a wee bit of a damper on one's previously sunny mood.

I didn't manage to really pull out of it until we got home and the necessary demands of motherhood imposed their blessed selves on me so as to require more attention than my rogue emotions. Last night, Kirstan dropped off a giant check and lunch and breakfast goodies--we already polished off the box of Eggos, girl, Megan waltzing around saying, "Leggo my eggo!" How will I ever thank the lot of you sneaks? I am humbled and truly amazed. What girl gets to not only pursue a business that is more like a fifth child than a business and manages to get her friends and family to partially finance it and deliver food to boot? It must seem like a scam, as Melody points out--she who comes to take such great care of my children and mops and sweeps and tells me every detail when I get home, which I so need to feel connected. She also is hanging one of her stunning quilts on my wall every time she visits--a rotating exhibit--she's so talented, and they're beautiful and life-giving art--I look at them and find home--such is the true working of great art; last nights is called "Girlfriends." How apt.

The beautiful silver lining is that Clark and I rented an absolutely hilarious movie called "The Amateurs" which I demand you all to run out and rent or set up in your queue immediately. I laughed so hard--but, fortunately, didn't pee. I did nearly snort out my licorice tea (sorry, bro--I know you said no snorting, but what's a gal to do?)

This morning, my one priority was to head to my primary caregiver's office to pick up my dad's medical records. For those of you who don't know, he died at the age of 45 (I was 20) of an aggressive sarcoma, the details of which are still fuzzy to me. I need his medical records so I can start filing the paperwork to do some genetic testing to find out if I am carrying a BRCA gene, a breast cancer gene mutation. I got there and said I needed to also see if I had a UTI, which I did. I don't know if it's because I was there, or because I have cancer or because the office was dead this morning, but they got me right in to see the doc, and I started some antibiotics. If it's because of the cancer, then I guess we can add that to the list of perks.

So I've got 38 pages of my dad's story in my hands, and I'll be spending the rest of the day reading through it, googling terms I don't understand, and invariably balling my head off. Not a day goes by, 14 years later, that I don't thoroughly, wholeheartedly, and absolutely miss my dad. He was very instrumental in a lot of people's lives, and remains someone with whom I really felt valued for who I was. Of course, at 20, I knew him less well than I wish I would have, and I miss what could have been. I'll never stop believing he was taken before his time, stupid Christian platitudes nothwithstanding. It's inexplicable to me, and I would never be who I am now had he not died, but it's still shitty and wasn't fair.

I hope to put some pieces together, since for reasons that are too sordid to go into now, my dad's story and history seem irrevocably gone from our family history. I am story, I do story, and I am lost without story. I want his story--it's so pertinent, especially now.

Again, thanks for reading my rantings and ravings. I met, just this morning, two women who live life out loud like I do--I met them, how else, through a get born contact--and I find I'm still, after having met so many people who embrace my level of rawness and honesty as refreshing and bracing and beautiful, stunned and shocked that there exists such a powerful sister/brotherhood of people who feel the same way. I guess it comes from having been surrounded by crazy naysayers for way too long--my default is still trying to adjust. Whatever the reasons, I'm still delighted, amazed, and have never felt more like I've found my home. To all of you who have embraced get born, and, thus, me, thank you.

Thursday, June 19, 2008

A Persistent Query

I've been mulling over the advice I got awhile back, which involved laughing a lot and making sure I keep a positive attitude. I have only one response.

How the hell am I supposed to laugh my way to a cure when every time I laugh I pee myself? Maybe another t-shirt is in order? Pee for the cure? Cancer pales in contrast to my urinary incontinence?

Shit. I mean, piss.

Wednesday, June 18, 2008

Happiness is no wi-fi, cell phone coverage or doorbells

We just got back from four days of heaven. Kyndra (she's my favorite, Mak sang out loudly at the Rio) had booked a week at her family's ranch in Gypsum (outside of Vail) awhile back, and, following a tradition we started two years ago, where we schlep everyone up to play and lounge and eat and relax, we decided this was the perfect time to go.

When we arrived, I kept noticing Jordan Kyndra's 3-year-old, looking at me. I've been rather remiss in hair styling lately, due mostly to laziness, so I had thrown my hair into one of the girls hair bands, which is to say, a pimped out hair band, and finally Jordan, said, "You look like a present, Auntie Heather." At first I thought she was being wise, but then Kyndra had to go and point out the fact that my head looked as though it was sprouting pink sparklers.

It's gorgeous up there right now, the late-lasting spring rendering everything green and Ireland-like. The kitchen and dining room windows overlook a hay field, where the horses gallop back and forth and deer wander through. The girls stand at the window with the binoculars the wrong way and say, "They're so far away!" It's hilarious. We have all come to love the ranch, which is how it's referred to now. In the front yard a rope swing hangs from a swarthy aspen and they swing to their hearts content. There's also an ancient two-seated swing on the patio, the seats facing one another, that serves as a "train" for more imagination games than you can possibly fathom, particularly for my children, who have been adequately ignored in their young lives so as to develop keen, vivid imaginations.

We went on long bike rides, took the kids to the very cool rec center pool (it has a lazy river--what's not to love about that?), went on walks, and basically lounged around. I very nearly forgot I have cancer, and that, according to one of my previous posts, is miracle. Also Kathy Busse wrote me a breathlessly beautiful email about the gift of being able to forget, if even for a moment: "Yet we get up, we work and play and forget...this in itself is sometimes that greatest reward. That we can sometimes hide from the reality of mortality." Indeed.

This week was a perpetual exercise in forgetting. It was so therapeutic to not have anywhere to be or any phone calls to make or schedules to facilitate. Honestly, having cancer requires so much scheduling. I think only very organized, very type A people should be allowed to get cancer (don't get your panties in a twist--I don't want anyone to get cancer, I'm just saying) because those of us who are say, prone to forgetting appointments or being perpetually distracted, well it just really puts a cramp in our style to have to find child care when we're used to doing everything with our children in tow, thank you very much.

Blah, blah. It's late, so I need to end. I go to round three of chemo tomorrow, followed by a "week" off, though I'm starting my second phase (I'm at a loss as to how to classify these treatments--is each individual one called a "heat" and the bulk called the "set?" I'm mixing sports metaphors here. WHERE'S MY PATIENT ADVOCATE, dammit?) At any rate, I start my second batch early, on the 30th, so as to accommodate our pre-fourth of July camping plans.

Oh, and somebody sure as hell better nominate me for that pink thing Eliza posted about. It's not enough to have my neighbors cleaning my house, people bringing amazing meals and lunch fixings, friends buying me fancy laptops and printer/copier/faxer/blender combinations--I need a spa day on top of it. If I'm gonna have cancer, I ought to be greedy while I'm at it. Or else what's the use? Last week, a nurse gave me a pink backpack and blanket put out by Herceptin, one of my drugs. When I responded, "Wa-hoo, cancer pays," she rolled her eyes and said, "I don't think so." If she only knew........ If Tiger thought he had mega endorsements, he ain't seen nothing yet. I've got a kick-ass blog and funny friends. All he has is Nike.

Friday, June 13, 2008

Miracles

Whenever I find my mind going to “chronic disease” or putting some arbitrary time limit on my life, almost automatically, without real intention—what could almost be called a default—either I whisper or am whispered to, “Except for the miracle.” I’m a hold out for a miracle. Whether this is faith or foolish hope will invariably be proven in time.

Whether this is faith in miracle by way of a wicked cocktail of cytotoxic drugs, a willfulness to keep laughing, the drive to continue the tedious, holy work of bringing presence to the mundane of the everyday, or something else out of my hands altogether, I don’t know.

What I do know is this: cancer hasn’t made facing the everyday challenges I always have struggled with easier: the challenge to engage my children remains, the hard work of corralling my rogue thoughts out of the ruts of neurosis persists, the pursuit of being present and intentionally living in the daily, the tedium, continues. It hasn’t made it easier, but it has made it more urgent.

I guess I’ve decided that the life itself is miracle, and any extension of it is gift. Even more though, to go deep into miracle life, to really dig into the marrow of living rather than to skate the surface, merely surviving from one day to the next, is nothing less than supernatural, a grace given outside of the numbing normalcy to truly be here. And any more time I have in this pursuit will be miracle. That’s one hell of a reason to fight like a motherfucker.

Thursday, June 12, 2008

Chemo Ride #2

I'm sitting here at chemo, the anti-nausea drugs dripping before I start the Taxotere and Carboplatin. I'll also get Herceptin today, but not the Zometa. Michelle, the adorable chemo nurse giving me my meds today said that my blood counts are great--no lows. This is fantastic, given the fact that usually chemo kills off a lot of white blood cells (I think). So that's great news.

I have no deep thoughts today. My well of wisdom has run dry, the deep, profound thoughts run amok. Heretofore thou shalt all be bored senseless by my inane ponderings of insignificant drivel.

We brought the girls in this morning to get a tour and meet everyone. They were great and of course charmed the socks off everyone. I put Eliza in pig tails to make sure that her cuteness properly motivates all relevant personnel to kick ass on my behalf. Clark then took them outside where my mom took over--she had brought an elaborate picnic and outdoor activities--they had a great time and even managed to give their extra food to some homeless men loitering around the park. Good thing, since I was upstairs engaging in sinful behavior (see below).

Jeremy, my brother, brought some software over to load onto the laptop. Janalee dropped her kids with my mom at the park across the street and came with her camera to document "chemo in real life."

We also decided that there's a definite market for "Chemo Porn" and while I'm no model, and couldn't begin pose nude with a chest port and cytotoxic drugs dripping in, as I would invariably crack up and have snot running down my face (soooo sexy), I think there may be money to made somehow, someway. During this discussion, Jeremy and Clark blushed and hid their faces, protesting loudly that they were not associated with us, but merely peripheral victims to our depravity. I laughed till I nearly peed. Good, clean, cytotoxic fun. Nice photos, jc, baby. The last one is the boring chemo shot. But, there I am, hooked up, pumping in, kickin' ass.

Tuesday, June 10, 2008

Holy Laptop, Batman!

So this morning I placed a call to one of my oldest friends (she's not old--the friendship is), Dana, who I've mentioned here before. Her daughter, Emersyn, is the spunky little four-year-old who has Loeys-Dietz syndrome and just bounced back from open heart surgery at the beginning of May. Back when my dad died, in 1993, Dana was probably the best grief counselor I had. She didn't say much. I don't recall us talking a whole lot. Her dad and my dad had been really good friends in their early teaching days, and our moms are still close. Dana and I have known each other since we were three years old or something crazy like that, and we've never really lost touch. She's been through more than I think almost anyone could handle, and she remains a woman of grace, wisdom, and great mercy. I can't believe she calls a boob like me friend, but I'm damned lucky.

I called her this morning and we talked and cried about dealing with the reality of death on too regular a basis than we'd ever really registered for while walking the aisles looking for wedding china. I never fail to get off the phone with her and not feel wholly like myself. I think she was certainly the first friend I ever knew who loved me just for me. And given her track record thus far, she's one hell of an ally in this ugly war.

I hung up the phone, kept pulling out a few of those annoying thorns in the back yard--I take it as a personal offense that every single one of them poses a threat of pain to my daughters, and I yank them out with proportionate wrath. My friend Kirstan had arrived earlier to help Katie finish off the 80-square quilt she'd sewn in a day and a half last week, and I was giving them some space away from my larger-than-life-don't-let-anyone-else-in-the-room-even-my-eight-year-old-get-
in-a-word-edgewise self so they could get in a word edgewise. But soon Katie came out and told me Kirstan had a surprise for me. Being the selfless, non-self-absorbed individual I am, I was mighty intrigued.

As I came back in, I saw Makeesha sitting on the couch. I was quite confused. Was Makeesha the surprise? If so, yippee! I love hanging out with her, and she's so pretty, so what's not to love about that? But no, Kirstan is tapping those gorgeous long fingers on a cardboard box. I'm thinking chocolate and a journal and books and nice chemo stuff to keep me occupied so I don't yammer at the nurses for four hours straight.

As soon as I opened it, I knew what it was. good lord!! Everyone bought me a laptop!! All of YOU! You sneaky people snuck around and gave money and wrote checks and were sneaky! (Also, Makeesha is still accepting money through the 20th, if you wanted to contribute to the effort--no changes in the initial notice that you kept secret.) It's a beautiful Dell laptop, the one built for use in small businesses, and will be followed shortly with a delicious batch of software, and, apparently, a kick-ass printer/scanner/fax/motorboat/minifridge. Wow.

I didn't have any more tears left (Dana and I cried them all out earlier, over thorny weeds), but I was speechless--NOT any easy thing to accomplish. I still don't know what to say. I'm humbled and grateful, no more so than I am for all the gifts of service and meals that have made these last hellish weeks manageable, but so grateful nonetheless. I can't believe how you all banded together and gave me a tool that will undoubtedly aid my journey of fighting and recovery. Writing for me isn't simply a way to feed my ego. It's a cathartic, healing discovery of my faith, my own self, and where I want to go. When I write, I map out my way home, every time. I've always loved pounding out a bunch of words on a keyboard, relished the thrill of watching my thought process fill spaces and lines across a blank screen.

So this is an immeasurable gift, as is the presence and support of all of you. Thank you for being with me on this journey, for not, as I told one new friend, "running for cover." Thank you for bringing meals, for making eye contact with my girls, for sending cards, for praying, for reading my streams of consciousness. Thank you for participating in a kind of community that I believe is the most effective--one that doesn't run from conflict or the truth, one that doesn't offer or accept easy answers, one that kicks in the strongest when the heat is on, one that knows that laughter and tears join the glorious river of life. And thanks for a laptop. It will be well loved and pounded upon enough to make it feel very worthwhile.

Monday, June 9, 2008

Best Day Out

Today, aside from some chest tightening and some muscle aches, I feel pretty good. Of course, the massage didn't hurt.....so nice.

I've been trying to walk and exercise more. Some of you know that I had been an avid, very faithful exerciser for years, and then, seemingly from last fall on, had been really struggling to maintain consistency. Mostly I beat up on myself, tuning in to a steady stream of KFKD radio, eating shame for breakfast, lunch and dinner because that is what I do, but now I'm wondering if the cancer was sapping me of my energy. At least, that's the story I'm sticking to.

So this morning, while my kindly neighbor Lorene looked out for the kiddies, I walked the giant horsey-dog down to the river. I've been told I'm difficult to keep up with while walking, to which I merely reply, "That's not the only thing you can't keep up with" and keep walking. I feel much better, symptomatically speaking, when my heart is pumping. Psychologically speaking, it makes me feel strong and well. And so I am.

On my return, while approaching the bridge at Wilson, a city worker was very thoroughly and quite proudly, as far as I could tell, cleaning off the bronze faces that line the wall under the bridge. I was so taken by his actions, whether he was paid to do this or not didn't matter, I don't think. He had two rags--I think one was to get the majority of the cobwebs and dirt off, and the other to dry and shine the faces. I said thank you to him as I passed, humbled and gratified that someone was taking the time and more, the concern, to beautify a part of my walking-biking-running route that I've always enjoyed.

Ever since those faces went up, they've delighted me. The variety of expressions afford as many possibilities of character as ones' imagination is willing to entertain. They can elicit a laugh from a pudgy toddler who sees an old man with wrinkled, yet jowly cheeks sticking his tongue out. Or a sentimental sigh from a young woman who sees in one face the same poignant sense of sadness she feels in her heart. They mirror the vast ocean of human diversity and experience, and they reside in Loveland, a small pond with little experience to boast, but a lot of bronze.

I love that he was washing their faces. Perhaps the tenderness in the action, though it wasn't as though he was sobbing great crocodile tears over them or even moved himself, but perhaps his tenderness gave me hope that I may yet approach my fellow humans with more kindness and generosity than often comes naturally. Or maybe I just liked that they were being cleaned. It seemed nice, somehow, that they were being cared for. I hope not at the expense of Loveland's real people who live under a bridge, of course, but maybe there's room for all of it.

I may have to go wash my mouth out with scotch, this post is getting so sweet. Well, it was a nice moment, and maybe a non-acerbic moment is refreshing. Don't get used to it.

Thankfully the fear fled for today. Katie assembled a gigantic carnival in the back yard, complete with sheets attached to tree limbs to serve as stage curtains, couch cushions lined up and covered with blankets as a stage, a bowling game, hula-hoop booth, a massage booth, a "fanning" booth (during which Megan would fan you with a tattered Chinese fan), and I don't know what all else. The child's imagination and initiative is endless. She's got more energy than anyone I know. Emily and I have to nap just watching her. Megan, of course, blows off energy by leaping around and wreaking havoc, which in turn ends up with Katie yelling at her, sounding every bit like me. Eliza managed to sneak out of her nap three times, after which I gave up and decided she must not be that tired. When Clark got home, we were treated to the "Spooky shows" on the stage, which involved Megan as a vampire, Katie holding a spider from a stick, and the phrase "I eat teenagers" more times than we could count. Clark and Emily got to be contestants in a game, and Emily won. Clark cried, so Emily gave him her prize.

Tonight, the best part was when I was brushing Eliza's teeth and norming bedtime behavior (as if it actually works.)
"Eliza," I said, "Stay in bed." I was very stern.
"You Heather," she replied.
"Yes," I said, "I'm Heather, and you need to STAY IN BED tonight. Say, 'Yes, Mommy.'"
She looked at me with her big brown eyes, said slowly, "Yes, Heather."

Good night, everyone. Thanks for tolerating me. Oh, and by the way, Qdoba's starting a Monday deal--chicken burritos and a soda for $5 on Mondays. Sweet!