gray spaces

Laughter, Tears, Quilts, and My Crazy Roller Coaster

2008-06-20T12:01:00.000-07:00

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.

A Persistent Query

2008-06-19T11:04:00.001-07:00

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.

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

2008-06-18T11:03:00.000-07:00

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.

Miracles

2008-06-13T11:01:00.000-07:00

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.

Chemo Ride #2

2008-06-12T10:57:00.000-07:00

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.

Holy Laptop, Batman!

2008-06-10T10:55:00.000-07:00

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.

Best Day Out

2008-06-09T11:43:00.000-07:00

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!

Fear

2008-06-08T11:42:00.000-07:00

I woke up this morning to a back full of knots, cranky as hell, and ready to rip off anyone's head who came too close. And.....he did. Poor man. Bill, I think he may need to go out for that beer with you. I didn't sleep well at all, Eliza being fussy and needing too much reassurance to give me more than a few consecutive hours of already-restless, angst-laden, tossing-turning half sleep. The coffee didn't even satisfy, the taste falling flat in my mouth. Normally, I need coffee like an addict needs heroine, but the only thing I could taste this morning was bitterness at meaningless platitudes flung out of other's selfish needs for their own validation and disregard for what might actually help me. In the midst of a fair amount of reasonable terror, by anyone's standards, trite phrases that attempt to put a mere band-aid on my gushing wound do little more than exacerbate the fear. To be fair, there have been precious few flung out, and particularly not from anyone who understands my commitment to honesty and truth. Nonetheless, true to my form, the few that do come grate on me, robbing me of precious energy I need to fight. Mostly, they distract me from a singular focus--to concentrate wholeheartedly on staying centered. I realized, as I tasted my coffee again, this is it: this is what fear tastes like.

I'm not really even afraid of the cancer. I'm afraid of what trying to conquer the cancer may do to my strong, steady resolve, untested up until now, content to linger arrogantly on the sidelines of pre-experience. My resolve has been pounding her breasts, very nearly daring cancer to come and just try, looking around at the audience and shaking her cocky head as if to say, "You know who's got it. You betcha! I got this bitch kicked in the ass already." Such is the confidence of the inexperienced and the ignorant. Also of the largely unaffected--people who don't really know me anymore who portend to know that I'm going to "be victorious" or "overcome." But, like my full-of-herself resolve, none of them know. Just like I don't know. I knew I'd be happy once a plan was in place. And I was. Last weekend was a triumphant, gleeful time, empowering and all about the building of momentum. Cheerleaders, we all were, so excited, confident beyond any doubts at my ability and strength to get me through this.

Well, now I'm scared. Fucking shitless. Friday, as I said, was hard. Yesterday was better. Today, symptoms aren't even close to Friday, but I'm finding myself struggling to stay out of a place of constant fear--fear of pain, fear of having to find places for my kids every day of every week for god-only-knows-how-long, fear of not having my kids with me if my mortality really is in question, fear of what happens if I don't endure the pain, fear of the pain I've heard about but haven't even had yet, mostly.....fear that I really am not strong enough to do this after all.

I thought I would spend time meditating to will out the cancer and speak in health. Now I think I may have to spend a good portion of my time meditating to mitigate the anxiety that the fear of pain brings. And the fear of not having any normalcy whatsoever, or any way to raise my pathetic self out of my pity-party and "buck-up, Camper!" and "Look on the bright side!" Sure, it's pretty easy to have everyone send me titles of funny movies, and be so cocky about how I'll kick cancer by laughter and faith and thinking positively.

Until I can't stay awake long enough after the kids are in bed to even watch a funny movie. Until I'm so tired from a night that made me tired that I wake up already wanting to cry. Where, exactly, is perspective then? Where's that resolve, all painted up and pretty? Nowhere to be found, I'll tell you. The only lingering taste is the metallic, slightly nauseating taste of fear--fear of the unknown, fear of the little known, and fear of not having the moxie, after all, to really do it in style the way I'd like, if the possibility exists to do it at all.

The worst part is that I used to privately scorn those who lived imprisoned to anxiety. I secretly considered them weak-willed and lacking sufficient moral rectitude to rise up out of such needless, silly worry. Never mind that I mind-fucked all over myself, worrying with every breath that I was completely screwing up my kids, or not being a good enough wife, or perhaps I had offended so-and-so and that was why she hadn't called me back, or spinning for the umpteenth time a relationship gone bad in an attempt to make sense of it so that I could find someone or something to blame. Oh, I was in prison to my anxiety, all right. I just gave it a different name so I could feel better about myself and justify what I was doing. Now, I realize I'm imprisoned to Big Fears so long as they have free reign to romp around in my addled mind.

So this afternoon, I set out to walk, knowing that some endorphins and fresh air would, if nothing else, give Clark a reprieve from my sharp tongue and give me some much-needed perspective. As I walked, I realized what I needed was courage. Courage to withstand the fear with fortitude and humor. When the fear of pain and side effects stalks me, I lurk around hunchbacked, almost willing the pain to come so I can just get it over with. How, I ask, do I prepare myself for something I don't understand? No one can answer this for anyone else. Today, it helped to walk, to be with people who love me enough to distract me from my neuroses, and it helped to be real about the fear.

While I'm still tired, I'm not quite so scared right now. I'm sure that will change tonight when I lay down and my chest tightens and the warnings of side effects start swimming through my brain. Perhaps it's time to bring on the marijuana.

Smallish Update

2008-06-07T11:41:00.000-07:00

Here's a short update to make up for the novel I wrote last time. The first day post-chemo was rough. I woke up at 5am feeling chilled and feverish. I had been warned multiple times to watch for fever, so I kept taking my temp, but I wasn't too hot, just achy and feeling feverish. I went to Target anyway--I've had a list of to-do's I wanted to get done all week, dammit, and I was going to do them! It went on this way for the rest of the day--I felt as though I had a terrible case of the flu--aches all over, a fever of 100 degrees all day. No nausea, though, for which I'm grateful.

Apparently, the Taxotere is what gives the flu-like side effects. Last night I slept really well and am feeling enormously better this morning. I can understand the depression and despair that must go along with feeling really crappy for a long time. The whole rationale Tang and Kanard gave, too, for hormonal therapy increasing "quality of life" is also making sense. I'm sure I haven't seen the worst of it yet, and I'll admit it scares me. I don't like feeling sick, and all of a sudden I start to realize that this is all somewhat of a gamble anyway. My cousin Sarah came over after we'd met at Target yesterday and taken the kids to Chick-Fil-A. Thank God she did. I just rested for awhile while she took the girls out on the bike train. She's so brave.

My friend Abra came over and did Reiki on me, which was immensely relaxing--I think I fell asleep several times, in between Katie coming in to inform me of phone calls and Eliza waking up from her nap. Eliza came in and lay on my chest and got some Reiki too. She's such a little snuggler, and I love the feel of the weight of her little body on my chest when I lay down. I think that's one of the reasons I kept procreating--they're so smallish and with those little cheeks--who can possibly resist? Abra's husband Kevin supervised the kids while we did "relaxation" as we told the kids.

Sweet Mary Ligon from church brought over a gorgeous fruit salad, out of which I caught Megan, after dinner was over, carefully picking out and eating all the raspberries, and a chicken stew. It was delicious. I cannot believe the continued generosity of so many people. Please accept our thanks.

I think I'll take a bike ride today. It looks to be gorgeous.

Ta-ta for now!

Hammers and Villages

2008-06-05T11:38:00.000-07:00

I want to be concise and brief, but it won't turn out that way. Also, I won't post a photo of me in my briefs. That, I will spare you. The details, I will not. They will be long, drawn out, horrifying but funny, and potentially nauseating.

Yesterday was one of my hardest emotionally. We dropped the girls at Janalee's (she's a brilliant, creative friend who creates the funniest, realistic, "life as it really is in the trenches of motherhood" cards: check them out--I've probably sent a few e-cards to each of you at one time or another: www.motherhoodwithattitude.com (What's not to love about a company with a name like that?) She lives about two steps from Rose Medical Center, which is where our treatments are, and has offered me the bed in her basement closet anytime. She's such a doll. She also facilitated a lemonade stand, in the rain, with six little girls in princess dresses (Katie, excluded of course, who, at eight, is too old for dress-up, unless it's Pioneer Girls, and who wrote out the sign.) I posted the photo in "photos."

We then made our way to Cherry Creek Imaging, a lovely facility housed......in a bank. We figured that the screams and moans coming from the biopsy locale serves as a proxy "Debtor's Prison," warding off the potential riff-raff that might seek to take advantage of their financial generosity. The radiologist would do well to give the McKee radiologist who did my breast biopsy a little tutorial in patient sensitivity when dealing with people who's lives have just come crashing down. The Loveland yoohah was a complete asshole who looked confused when we said "Lydocane" and then came out to talk to Clark after the biopsy, barely made eye contact, quipped callously, "I'd be surprised if it wasn't cancer" and walked off. The worst thing was, I knew this guy in my past life. Idiot. Yesterday, totally different. And thank heaven, cause this guy wielded a hammer. Yep.

If you're prone to fainting at the description of primitive medical practices that aren't really so primitive at all but involve steel hammers and a very humorous radiologist with giant biceps, I suggest you skip this paragraph. This guy started out by answering every question we had about the scheduled procedures: bone biopsy and port placement. If you need an explanation, by all means do a google search. He went through my PET scans and very thoroughly explained why trying to biopsy any of the bones but the pelvis (for those who don't know, my bone metastes are scattered quite evenly throughout my body--back, femur, pelvis, ribs, neck, hell, probably even the pinky toe--which we'll promptly amputate should it show up on the PET). So he explained that he'd deaden me and then pound a railroad spike through my skin and into my bone in order to get a sample for biopsy. It's important to biopsy the bone so that we know that the cancer in the bones is the same cancer that's in the breast. So we, duh, treat the right cancers.

So the bone biopsy is CT scan guided, meaning I lay on the long, narrow CT bed and they run me in and out till they find the spot on my bone. Because it works differently than the PET scan, it's sometimes more difficult to find, and you can't do PET guided bone scans (don't ask me why---again, google.) So they ran me in and out a few times, then he came in and started to deaden my pelvis. It worked for awhile till he sank that needle to the bone, and I screamed. So he deadened some more and I screamed still. So he deadened some more and it sort of felt better. And then I began to start my pass-out process. It's a cool party trick--I start to vasal vagal, then my face goes white as a ghost and I start to lose consciousness. It's an anxiety reaction, and it happens to me when I start to fear the pain too much. I do really well till the anesthetic isn't working. Fortunately, an ice pack, oxygen and getting my feet up can usually keep me from passing out completely. He kept working throughout, first tapping the needle in lightly, then pounding harder and harder. After ten or so hammers (worthy of a very motivated construction crew) he and his staff would leave the room, run me into the CT scanner so he could see if the needle was on top of the white spot that indicated bone metastases, and then come back in, slightly reposition the needle if necessary, pound a little more, and then do it all again. I think I went in and out of that CT scanner nearly 30 times, but I didn't count. I could be exaggerating. But probably not. I never exaggerate.

Finally he got the needle in far enough. Then he began an exercise best described as churning butter. He yanked that needle back and forth so he could actually work the bone sample out and into the needle. Otherwise, WHAT WOULD BE THE POINT???!!! He was successful, I'm happy to say, and my poor pelvis hasn't seen that much action since little Liza-loo sat on it for two and half weeks too long back in '06. After it was all said and done, he removed the railroad spike (his words, not mine,) and quipped, "Another bloodless operation." Seriously, he deserves sainthood, even with a hammer. Maybe Dr. MC Hammer Saint.

Then, I waited on that table while he spoke to Dr. Paul about a chest port rather than an arm port. Basically, I chose the chest port for the simple reason that it goes into a bigger vein, has a shorter way to travel, and, the vein it uses, the jugular, has a twin on the other side of my neck, so if the one with the catheter gets some clotting going on, there's another perfectly gigantic vein on the other side of my neck so my head won't swell......bigger, of course, than it already has given my national acclaim as a magazine publisher. The arm port goes through the only vein feeding the arm, and can sometimes cause the arm to swell up really large. ew.

SO....I waited. And I wept. These vasal vagal reactions always just kill me emotionally. I feel so out of control, so unable to connect with my mind in order to still my fear and slow down the shrinkage of my blood vessels. It's incredibly disempowering and I feel vulnerable, small and scared. They're never within my control, and try as I might, I can't make them stop. They are a tiny microcosm of this last three weeks, and they serve as an emotional valve, I think where I can let out all the stress. It's not cathartic, though. I don't feel brave, or strong. Also, as a side note, I don't do platitudes well. They make me snarky. I know I'm brave and strong, and I'll kick ass on this. But there are times I'm not, and I think this is an important place to purpose to visit every so often. As I've made a career out of, denying those dark places doesn't make me strong--it makes me a person who lives in denial. I want to keep embracing the nuance of this beautiful life, even the moments where the loss of control, of plans, of hopes and dreams and finally feeling like I have a place in this world I love seem to have been ripped from me capriciously, with no real reason, damn the platitudinal crap. Yesterday, I got my bone pounded in to with a hammer, and it hurt like hell. That's it. No real lesson, no wise and spiritual moment. Just tears and loss and a deep grief.

The port placement was a piece of fucking cake after that. The doctor was great, kept making goofy comments like "Hey, Heidi, can you clean up those pools of blood all over the floor?" They gave me some happy drugs through my lovely jugular veins, for which I was infinitely grateful, and we were done and on our way. But I cried all day. It was just too much. I know that the biopsy was important, despite my platitudinal rant earlier, to identify the cancer, but it was just too much.

We went to visit the twins--the miracle babies that I'm proud to call my niece and nephew--Bridget and Landon, and got to hold them and let our girls meet their cousins. It was therapeutic to hold them and kiss their soft little cheeks. As my Hoochie Mamas can attest to, I do love holding a baby--anyone's baby, a stranger at Starbucks who I pick and ends up writing for my really cool mag, a woman at Birth Chat who has an amazing sense of humor and a resilient spirit unlike many I've met, and last night was no different, save for the fact that they're not strangers. I'll post some pics of me and them when Missy sends them along.

We had dinner at Chili's, swapped cars with my in-laws who took the kids home to Loveland for the night, and then I spent the evening watching raunchy comedy shows on cable that made me laugh. And hanging out with Clark. He, also, deserves to be sainted. Because, the truth is, I've always wanted to be a princess, and I'm fairly good at giving orders. I'm trying to refrain--I'm pretty sure being somewhat independent and maintaining my drivenness is a better cocktail to go with chemo than demanding service from my subjects. Though, the fresh coffee in the morning is a major plus.

THEN, today! Redemption in the form of cytotoxic drugs pumping into my system. The rain in Denver this morning served as an apt allusion to the drugs washing away the cancer cells. After all of this messy, devastating process, the culmination felt incredibly empowering, sitting there watching what one doctor called a "space-age drug", Herceptin being pumped into my body to fight with and for me. It took about six hours from start to finish, including exams and seeing the doctor, getting IV fluids and anti-nausea and then the chemo drugs. Fortunately, I didn't have any reactions--I'm so grateful--I was done with enough lack of control after yesterday.

I met a man who presented, a year-and-a-half ago, with stage four esophageal cancer. It's now in his stomach, and it seems as though he comes in every day. He has a five-year-old and has just learned to fly fish. His name is Bart, and he's obviously a fighter. We started swapping around dark, morbid, cancer humor (my favorite kind), and he told me all the t-shirts and buttons he's made using CafePress. My favorite was: I'm making cancer my bitch. LOVE IT. I told him about my "Stage Four, I'm not your whore," and he appreciated it. Of course I gave him copies of get born (you didn't think I would forget it, did you--prime audience--chemo patients who can't move for four hours.) I asked him to write this next issue's Dad's column for me. So, duh, if you haven't subscribed, now would be a good time. I was deeply appreciative of his warmth, and humanness. A really great welcome from someone who I already know qualifies as one of "our people."

I got to come home to a clean house, because, oh, my ever-loving-Lord, five women from my neighborhood came over this morning, cleaned my entire house while also, I'm told, spilling coffee and playing spies with my daughters, and did all our laundry. Kick ass village action going on over at the Janssen crib. Basically, I think a group of suburban retired women threw a party and didn't invite me, and managed to get some cleaning done in the process. It was so amazing to come home to a clean house and laundry folded and done. Get this: they even changed the sheets. Heather Janssen's #1 True Confession: I never change the sheets.......on the top bunk bed.....or any other bed, except for once every several........months. Yes, it's true. I don't feel badly for it, unless there are really nice women doing it for me, and I feel a teency, weency bit of guilt, but, SO glad I didn't have to do it.

Ladies of the 'hood: thank you. We're humbled and truly grateful for your presence and this nice present. Even Gail, who just had shoulder replacement surgery folded laundry and brought over peonies and irises from her garden so we'd have fresh flowers on the table. Give it up for the girls from the 'hood, and also, there's a house for sale two doors down. We do have to approve you before you buy, though, and we require a wicked sense of humor.

Then Melody got home with our three older girls, who she had taken swimming for fourhours this afternoon, fed snacks to, and, oh, also, by the way, brought dinner, too. What the hell? She's pretty sure we have a scam going on--getting all this free food and cool activities with our kids, which we rarely do (see the last post for more details on occasional supermommy moments). I think she's right--we'll wake up tomorrow and it will all be a really sordid dream involving Clark and me exploiting the kindness of new and old friends, strangers, church family, acquaintances and random waitresses at Chili's. Yes, indeed. Let's hope so. Thanks, Melody. Clark and I both love your straight shooting style. Clark hinted once to her that he was getting prepared for what was ahead, exuding some confidence at what he knew was coming, and she deadpanned, "No you don't." She would know. We're grateful for you, lady.

So this couple of days ends well. I am content in our plan, peaceful in the knowledge that I, along with a more incredible community than I can have ever even imagined, as well as some kick-ass drugs, are now engaged in the eye of this storm, and fighting with all our power, prayers, moxy and tears. It's a good place, found in a profound place of dark fear. This, I believe, is a good, working definition of God.

Lemon Meringue Pie, a Tagalong and Amazing Friends

2008-06-03T11:38:00.000-07:00

The girls and I rode our bikes up to Safeway today to get some groceries. We stopped by the bike shop to see about a basket. I didn't buy yet. It was a boring black color, and Mak said she knows where I can find a properly geeky one, so I think I'll wait. Clark put together a contraption on the back of his bike--the tag-a-long, upon which is mounted Eliza's baby seat. So managed, barely, wobbling along, with Kate and Emily trailing behind. It was fun, shopping for the ingredients for lemon meringue pie--inspiration provided by Amelia Bedelia, of course.

So this afternoon Kathy and Lily and Sophie came over and we all made pie. Thank God Kathy was here--lemon meringue pie, with children, is really a two-adult process--be forewarned. And, Kathy is so smart--she uses words like "attrition" and "ancillary" in one conversation. And she's pretty. And so funny. I love her. The pies turned out delicious, and I felt like supermom. My friend Charlotte visited this afternoon, and remarked to Kay, who is a former chemo nurse and had come to give me some extra tips for tolerating chemo, that I'm such an amazing mother, doing such things with my kids. I laughed and said, "Oh, if you only knew--I do amazing things once every six months or so and advertise them widely. The rest of the time, I don't do much of anything, which is why you never hear from me the rest of the time." It's true. Ask Kyndra. She knows. So lemon meringue pie better have mileage for the whole summer.

Tonight, Eliza Brock came by; she was 27 when she found out she had breast cancer, with three kids 3 and under. She and I talked for a long time last night, and tonight she dropped off an entire "chemo bag" full of things that will help make this process more bearable. It was incredibly empowering to be able to see someone who has survived this hell and come out with enough energy to assemble such a thoughtful gift for a near stranger about to go through it herself. Thank you so much, Eliza. While I'm not happy for the reason for our having met, I'm so glad we've met anyway. It's a strange sisterhood.

Tomorrow I go in for my port placement (in my arm) and a bone biopsy. Clark and I will spend the night in Denver while the girls come up and stay the night here with my in-laws. Thursday I'll start my first round of chemo around 9am. It will be about 5 hours, they say. I don't know what to expect yet. I'm sure I'll know more soon.

Wayne and I talked about the lack of understanding that goes along with this, and, as is per my newer normal as defined by the last several years, I feel more comfortable living in the gray of not knowing than clinging desperately to something that I think I know. Maybe my own "solid rock" is a place of nuance and embracing the inevitable uncertainty that defines our days. Life is surely precious, but living awake within that reality isn't always as simple as a marquee on a church bulletin board. May we all be given the grace to stay awake for longer and longer durations, and have the eyes to see the eternal in today. Amen.

To laugh is to live. To laugh so hard you spew root beer is to live well.

2008-06-01T11:34:00.000-07:00

My friend Melissa sent this to me today, and I LOVE it!

Live your life in such a way that when your feet hit the floor in the
morning, Satan shudders & says...
'Oh shit...she's awake!!'

Hope Lives! (and walks with a jogger stroller!)

2008-05-31T11:35:00.000-07:00

This is a guest post from my very cool friend Lorraine Caron.

When Keri put it out there that she would be participating in the Pink Boa 5k today, I thought, "That sounds great, but 8 am registration?" Then I heard that Tiffany would be walking if her babe hadn't shown up, and I thought, "If a 9 month preggie woman can get out of bed to do it, I should... but 8 am registration?" So I decided to leave it up to fate and go if I woke up in time.

Fate (aka 8 month-old Sierra) intervened and I was up by 7, just in time to grab a bite and head to Target to get shoes and pants. (Can you tell how long it's been since I've worked out?)

And I'm glad I did. As it happened, Tiffany didn't walk (congrats, girl, hope I didn't spill your beans) but Keri, who had been up since 1 am still came out. So, even though I moseyed through the gate last, I don't feel like a loser. ;)

They were missing lots of registrations as well as T-shirts smaller than XL, but the sky was the clear pure blue you only get in Colorado and the Fort Collins wind was only a sweet breeze. (Not a tornado in sight!) Keri and I set off with Sierra in the jogger, heading for the finish line and the promised pink boas.

As we walked, we talked about the beautiful weather and how much our other kids would have loved to see the train that passed right next to the path (and honked at all of us - thanks train man! We've got your T-shirt waiting - Engineers (heart) Boobs!) We talked about improving our attitudes, where mallow grows, the responsibility of pet caterpillar ownership, and the hardship of having to see half-naked men out biking the trail. We chatted, as women and friends do, but the reason we were out on this beautiful morning didn't escape us.

Nearly every person walking (or running - some folks actually did that) had a pink sign or two or three pinned to their shirt. "In Support of...In Honor of...In Celebration of...In Memory of..." Some people had photos pinned on as well. There were women with no hair and shirts that said "Ta tas". And pink, pink, pink. All of these people were there because of someone's journey with breast cancer. Oh the stories that bunch could tell!

I thought about my younger sister's long struggle with cancer. From her diagnosis at 17 to her death at 26, she lived and grew and inspired all who knew her. And of course she cried and fought and gave up and tried again. She didn't have a cancer that inspired a mass uprising. Wilm's tumor is just a plain old kidney cancer. There were no marches of solidarity, no pink boa runs. So today I walked In Support of Heather, but I walked In Memory of Melinda, too. (I love you, sweetie.)

So we made it the three miles and got our pink boas. We'll get our T-shirts next week and I'm sure I'll be sore until then. But it was a great day with a lovely friend for a worthy cause. Check out the photos from today - my favorite is Sierra sporting pink feathers! After the first two pics, my camera battery pooped out, so the rest are from my phone. Low def - just like me. :)

TRIUMPH!

2008-05-30T11:33:00.000-07:00

So we've finally made a decision! We had our (groan) 7:00am appointment in Denver today, so we farmed out the girlys across Northern Colorado (many thanks to Sarah, Jo, Katie, Wendy and Wes) and headed down at, as the scheduler said, "0 dark:30".

Dr. Paul was pretty cool. He began by recapping our entire journey from start till now, then he continued on to what his vision of treatment might include. Initially, I was annoyed, thinking, "Yeah, yeah, I know all this stuff--I've lived through it over the past two and a half weeks." But, actually, it ended up being a great baseline for us to start from.

When he got to the treatment suggestions, he began by acknowledging that every treatment that has been suggested has been a reasonable option. Then he quoted a couple of recent studies and gave his recommendation, answered our questions, and then said "Yes," when we asked if we could seek care there. Turns out he's treated around 20 patients with my similar diagnosis, and he said that he'd like to, through the chemo option, put the cancer into a "nice remission" as he put it, and get a handle on the growth, and then move through the remaining treatment options. And, he never once used the word "palliative". He's a saint.

So I've opted to do chemotherapy accompanied by Herceptin and Zometa first, for about 6 months, then move to a mastectomy provided the chemo has been effective, most likely removal of the ovaries, and then hormonal therapy with Zometa and Herceptin will follow. The chemo regimen, for those interested, will be a Taxotere/Carboplatinum combination, with the Herceptin.

The challenging part of this, aside from the obvious side effects, will be the child care and scheduling involved. I will be going in once a week for three weeks, then have a week off, for about six months. This means that the day I get treated, we mostly likely will need child care, though it's not guaranteed. Then, apparently the third day after chemo can be a bitch, so I might need someone here to help out.

Once we have the dates, I think I'll ask Makeesha to put up a calendar and allow anyone who's interested in helping out to sign up for either half or full days. If you're only able to take two of the kids, I'm sure we can arrange that in some manner as well. We will post a schedule as soon as we're able. Again, please accept Clark and my gratitude for all the support that has come in. We are humbled and amazed.

The Fatigue Sets In

2008-05-29T11:30:00.000-07:00

am so tired. I'm tired of telling the story from start til now (I almost wrote "start to finish" and then realized there is not yet a "finish"). I'm NOT tired of supportive, kind people who only want to do whatever they can, so please don't read into that. I'm just tired of talking and processing and wondering.

We will go see a Dr. Dev Paul tomorrow of the Rocky Mountain Cancer Center in Denver. As of this writing, he has been highly recommended by the head of breast cancer at the National Institute of Health, as well as at least three patients with whom I've spoken directly. We are scheduled to meet with him at 7:00am, and they have scheduled an hour and 40 minutes for the appointment. Pretty damn impressive. That is, I am pretty impressive--my case, that is. We're starting to think that I'm somewhat of an anomaly, to be presenting so far along without a previous occurrence, and at my age, and with ER+ readings. Throw in the Her2 for giggles.

I keep wandering the house all day, knowing I need to sit down and write out my questions, but I feel so tired and worn out that I haven't done it yet.

Tomorrow is my personal deadline for having started treatment. I think I'll have to settle for a decision as to which treatment to start, as I'm somewhat skeptical of them ushering me directly into the chemo room promptly after my appointment and hooking me up. Our third opinion spoke to Dr. Tang after we saw him on Tuesday, and she agreed that the Taxol trial was a good one, and recommended it. Clark asked her why she recommended hormonal therapy when she knew the Her2 was positive, and she said, much like Shelanksi did when Tang recommended hormonal therapy (pre-Her2 results), that it's a difference in training, and thus, style. We're hoping for much more of a comprehensive rationale from Dr. Paul tomorrow.

Frankly, I'm champing at the bit. I want to start treatment and I want to have started it yesterday. I want to get past this phase of decisions and constant questions and waiting three hours in a room for a doctor. (o.k., so they haven't all been that bad, but I'm a bit of a drama queen.)

In other news, I'm halfway through Fortune's Daughters by Alice Hoffman, and it's an incredible book. So tightly woven and executed. I'm breathlessly in awe of these women who write fiction with such vivid imagery and clarity.

Also, I attended Field Day at the girl's school yesterday. That's an experience everyone needs to have, whether or not one has children. The tug of war alone is worth it. This morning both Katie and Emily got the coveted "Truscott Tiger" award, which basically means they're hot shit, but we already knew that.

For those of you who have brought meals, they're all extraordinarily delicious, and we're infinitely grateful. I'm pretty sure I could eat up Linda's hash brown potato cheese casserole by myself with a giant spoon. One nice thing about cancer: you no longer care if you overeat.

I'm wishing this were an eloquent post, but there's not much inspiration in this lazy brain. Oh! I do have something entertaining, though: I was headed out to mail some single copies of the mag when I pulled into the left turn lane. The young man ahead of me had pulled out too far and was backing up. He didn't see me (honestly--how could you MISS the gigantic big-ass gray van behind you?) and backed right into me. I sighed. Really? Do I really have to deal with cancer and a fender bender? I got out, inspected the lack of damage, and realized that I just didn't have the energy to figure out the phone number for the police. What the hell, I thought. Who even gives a rat's ass about the fact that he hit my license plate and I can't even notice a difference? He offered me a couple of bucks for my inconvenience, and I laughed and told him not to worry about it. He was a teenager and I'm sure scared shitless that I was going to go postal. I've often been really grateful for that gigantic van, and here's another time.

I'll write tomorrow when we've decided what to do.

Grrrr.......

2008-05-27T18:55:00.000-07:00

Today was supposed to provide clarity. Psyche! No clarity, only more confusion.

Some background for those who don't know: on Thursday, we sought a third opinion from an oncologist in Fort Collins. She had the Her2Neu results, and recommended hormonal therapy accompanied by Herceptin. Today, we had a follow up appointment with Dr. Tang at the CU Cancer Center, during which he told us of the recommendation from the Tumor Board which had met that morning. His recommendation changed from last Tuesday (which was hormonal therapy). Today he said he would recommend Taxol--a chemo drug--with Herceptin, rather than the hormonal therapy with Herceptin. Oh, and by the way, he said, there's a clinical trial that you qualify for which you can enroll in that would include this recommendation. Clark got quite agitated and began to ask if this sort of clinical trial was hard to fill--meaning, did Tang's recommendation for treatment change because of the availability of a clinical trial? To be fair, a research hospital has objectives beyond just me--they're researching. And, he continued to say that it doesn't' matter if we start chemo now or later--the outcomes are th same. this is in fairly direct contrast to what the Fort Collins oncologist told us--that if you don't start with hormonal therapy, you basically throw it out as a viable treatment altogether. We asked Tang about this, and he disagreed--he indicated that he would most certainly do a treatment of hormonal therapy after the trial ended. So, which is it, exactly?

Sitting for over three hours in one room has a really depressing effect on me. I went into this week with high hopes of finding a protocol that seemed to fit. I feel no closer to clarity now than when I was first diagnosed. Getting away from the hospital made the cloud of confusion lift somewhat, and Clark and I enjoyed pizza and beer with Megan and Eliza after we picked them up from Angie's. (Thanks so much, Ang!)

We're going to go ahead with the fourth opinion on Friday--why not add to the confusion? I'll keep you updated. Right now, I'm so exhausted I don't have enough energy to cry.

Random Responses to People's Kindnesses

2008-05-27T11:28:00.000-07:00

I thought I would post a few of the comments I've found myself making to people who are offering up their prayers, thoughts, and help. Everyone is so kind, and I'm trying to be gracious. Gracious and sarcastic, because I have to believe that you can be both.

1. (on an invitation to the blog) Please accept this invitation to keep updated on this hellish journey of mine (ain't I sweet, inviting you to hell and all?)

2. Thanks for your kind thoughts and fervent prayers. We're accepting all kinds at this time. Stay tuned for further developments--we might as well try to make this at least more entertaining than cable--after all, cancer can't have all the fun!

3. Since I last saw you, I've been diagnosed with stage 4 metastatic breast cancer. Basically, shit in a basket delivered to my front porch.

4. Clark's going to try to get back to work on Wednesday since we can't have him getting fired--getting cancer is so damned expensive--if I knew it would have been this pricey, you know I wouldn't have gone and grown a tumor. Honestly. I appreciate your support and kindness, and please know that I'll use and abuse your offer in the future, but it may be the further future rather than the nearer.

If I've written any snarky emails to any of you, please post in the comments section. I do love good black humor--so very entertaining.

Tuesday Morning

2008-05-27T11:26:00.000-07:00

I dressed in my favorite pink born flip-flop wedges and a hot shirt and jeans I snagged from Plato's Closet. They can't give me bad news if I look hot, right?

This morning we go get a brain MRI in Fort Collins, then to Denver to get the summation of the tumor board which will be meeting this morning. My hope is that we will have a plan for treatment at the end of that appointment.

The weekend was tumultuous, but there were plenty of times I just felt like normal, which is such a mercy.

As you've all been waiting, here is me and my bike. These aren't really flattering, but you're gonna LOVE the bike

Also, on Saturday, my friend Dana, who I've known probably longer than anyone other than my own family, came up with her four daughters. It was hilarious to watch eight little girls in the back yard playing "Toilet Tag"--who knew? She and her husband Bob and their girls have had a journey of a lifetime--their fourth daughter Emersyn, who is now four, was born with Loeys-Dietz syndrome (LDS), a genetic disorder that affects the connective tissue in the body. Their story is amazing and fascinating. Emersyn just had a successful Valve Sparing Aortic Root Replacement surgery and they closed her PDA valve--basically, one gigantic, big-ass heart surgery. She was out of the hospital in just four days (!). You can read more about her journey, and give to the fund helping Bob and Dana and the girls at www.emmysjourney.com

Here's photos of all those girls playing Toilet Tag and Red Rover.

Living in the Gray

2008-05-26T11:25:00.000-07:00

I met a woman the other day who shares a similar history with me: we both hail from very conservative faiths, were reared on truths made up of very concrete terms like black and white, right and wrong, godly and ungodly. We met on an occasion where I was wearing my get born businesswoman hat—in a boutique that has generously agreed to carry my magazine. Therefore, I described to her the mission, vision and founding principles behind get born: that I strongly believe mothers are at a disadvantage as long as we’re not free to tell our truth. I told her that get born is very personal for me—that it embraces a nuancing of the truth that, for me, has been life-giving and brought me freedom where before there was frustration and anger. I told her that embracing the reality of my life as a conflicted woman—a mother, a spiritual being, a self—has given me tremendous fulfillment and, I hope, brought similar relief to the women who read get born. She nodded her head in agreement, shared some of her story of how she, too, was reared in a very black and white, cut and dry world, but how she often gravitates toward the middle. Then she told me something a friend of hers had said, and I recognized the moment, as I so often do these days, as truth. I can best describe it as something someone says or a quote I read in a book where the words and the way I hear them resonate deep within my self, far beyond the surface of my skin and deep into the hallows of my soul. Her friend had said to her, in the midst of a conversation that sounds so similar to the ones I have with my strong sister-friends, “I have to believe in the validity of the gray.” When she spoke the words, I stood still for a second, then asked her to repeat them, then begged her to send them to me. She did so, just this morning, and the timing couldn’t be more perfect.

In this black and white world of cancer diagnosis, treatment planning, and sheer terror, gray seems out-of-reach and foolish. Gray means that cancer isn’t as powerful as we’ve been led to believe, but is a maybe, a remote possibility, even, which is not a concept that the medical community or my own fear have allowed me to embrace.

But last night I attended the engagement party of the son of one of my longest and dearest friends. I ran into women I hadn’t seen since I student taught—ages ago—and I had the golden opportunity to answer the question I love to answer: “What are you up to these days?” I get to watch eyes widen as I say “four little girls, ages 8, 6, 4, and 2” and respond to their comments about how I must be so busy. I nod sedately, murmuring agreement, and then I get to say, “And I also co-founded and now publish and edit a literary magazine for mothers.” It’s just so exhilarating to start talking about what has become such a passion for me. I live in life when I get to talk about it.

As I talked about get born, cancer took a back seat. Fucking finally. Triumph. And I relished dwelling in the gray. Cancer lurked, dark and black and ominous in the background, but I pushed it away by talking about my light, my truth. When I speak to friends who remain with me through my journey through fundamentalism, I often quote Jesus: “You will know the truth, and the truth will set you free.” Since I was a girl, this line has resonated deeply with me. It continues to do so, because it’s not factual, it’s not logical, it’s truth. Truth defies the restrictions we set up for it, the parameters we arrogantly believe will hold it within proper boundaries. Truth busts through them all and burns away pretense and prior belief and the chains that keep us captive to our own imaginations and fears. Truth truly sets free.

And my truth is this, for today: I have not changed—I’m still a fiery, passionate, sometimes angry, bitchy, funny, gregarious woman. I need people who respect my boundaries and won’t take advantage of my vulnerability to medicate their own damaged souls. I need to get to work on my magazine and play that delightful Wii with my girls. I need to talk about a grand God who doesn’t deal in fear or glory with Cathy and Kyndra and Tom and Makeesha and the rest of the Hoochie Mamas. I need to feel my husband’s arms around me even though he’s shaking from the terror of it all. And I need to live in the gray. The gray gives me hope, much like the gray cloud cover of today reminds me so palpably of days I spent in Ecuador, a young, faith-filled, naïve girl. I spent hours in my bedroom listening to the rain pound the roof and knew a safe place where God met me where I was and didn’t love me because I believed the right things. God loved me because I was Heather. I think She still does. Cancer can’t take that away, try as he might. I won’t be made cancer’s fool, remaining imprisoned within the terror. Many have done the same, and called it positive thinking. They are right. My name for it will be “living in the gray,” and kicking some serious ass all the while. Amen.

Friday

2008-05-23T11:23:00.000-07:00

This morning started off terribly. Just so damned depressing, all this cancer-schmancer business.

But it improved--sent off a check for get born, made a couple of phone calls regarding appointments, added some names to our subscriber base, and emailed. Momentum helps so much.

Then....
Then my husband, dear man that he is, went and bought me this gorgeous bike--it's silver with a giant seat so my ass won't be sore and suede handles--and we biked the entirety of the Loveland bike trail. One hour and forty minutes later, with the wind howling and me scanning the sky for tornadoes, we arrived (late) to pick up Katie and Emily from school. It was exhilarating and invigorating to be together and outside.

Right after the diagnosis, we splurged and bought a Wii. Now it's this comfort bike. I'm thinking that retail therapy is nearly as good as hormone therapy, isn't it?

So we wait for Tuesday, when we'll have the opinions back from the CU Tumor Board; I get a brain MRI in the morning, and then we'll meet with Tang Tuesday afternoon, and I'm hoping we'll start whatever therapy we've chosen then. We have found out that it's common practice to do hormone therapy along with Herceptin, which is the drug of choice for Her2Neu positive. If you're the praying sort, wisdom is a good one at this time.

Last night Clark and I watched Music and Lyrics with Hugh Grant and Drew Barrymore. I'm not sure if I was just punch drunk from a really shitty diagnostic week, or if the movie really is well written, but I laughed so hard. The opening scene, with the 80's music video, was the funniest thing I've seen in a long time. Clark had a great idea after we watched it: please list your 10 favorite funny movies of all time and we'll start to cycle through them. Laughter is one hell of a tonic during these dark days. We look forward to your ideas.

One Tit Wonder

2008-05-22T11:22:00.000-07:00

Or we could all get t-shirts when I get my breast removed, (if that happens) and wear it in solidarity: It would say "One Tit Wonder." Oh, god, I do make myself laugh. You all are so hilarious.

It's funny that you're talking about my tits. The day before I went to the PET scan, which would show that the cancer had gone to my bones, I was still thinking that I would be facing surgery soon. I stood in the shower as I wept over the potential loss of my breast, and felt so sad that, after all it has done for me--nurtured my babies, been a source of pleasure, given me a sense of kick-ass power, it's now being ravaged. I have read that some women think their breasts are betraying them, but it' s not how I've felt--I've felt so grieved that a member of my body responsible for giving so much life has been terrorized by a violence that has no right to attack my faithful boob.

One another subject, speaking of t-shirts--those of you have kept up with the ongoing get born t-shirt options will love the one we came up with last night: "You're looking at one ANGRY VAGINA!!" Much thanks to our dearest friend who will remain unnamed until she chooses to reveal herself for that one!

Love to all my angry, passionate, very, very funny and beautiful vaginas. And to the penises brave enough to show up here and be so supportive--I'm so glad to know you; you're strong and amazing to brave the enormous tide of estrogen.

Update

2008-05-22T11:19:00.000-07:00

f you can't hear my monotone voice, it's because I'm typing and not talking. The sheer volume of information that needs to be assimilated, in addition to the fatigue and nausea of this surreal diagnosis week, accompanied by a nice side of back pain for garnish have rendered me close to comatose. Clark and I went to see another oncologist today--Anne Kanard of something something Cancer associates something something (seriously, who can keep track?!) She was incredibly communicative and a delightful person. She agreed with Dr. Tang's recommendation to commence with hormonal therapy, so we have two opinions for hormonal and one for chemo.

To help anyone who is interested understand, what we think is important to weigh here is that Dr. Kanard seemed to think that if we don't at least start with the hormone therapy, we will have eliminated an entire arsenal of possibility available to us.

At this point we are still being presented to the tumor board at CU Med Center on Tuesday, which will be followed by a follow up appointment with Dr. Tang on Tuesday afternoon. I think this will help us to clarify our decision even better. I have a personal deadline of starting some sort of treatment by no later than Friday.

Also, my Her2Neu test has come back positive, which means that the cancer is more aggressive than if it were a negative result, and that there is a great drug to use when chemo starts, called Herceptin which apparently shows that it fights it well.

The party at the Rio was overwhelming. To be surrounded by such a wonderfully powerful group of women is nothing short of profound. Today, a friend who I haven't been able to connect with much recently dropped off a gigantic pair of red boxing gloves, and they're beautiful symbols of what I am fully planning on doing......as soon as I get some rest and relax for a moment.

Lastly, please remember my dear, funny, delightful friend Gretchen and her family in your prayers and thoughts and offers to help--her home was destroyed today in the tornado that hit Windsor. As I understand it, she and her family are staying with her parents, and are safe. Life is so damned precious, and I can't believe how freaking unpredictable all of this is. Gretchen, if you read this, know I love you so much--your humor and confidence make me feel so at home with you. I'm grateful you're safe. I'm sure I'll have some extra meals to toss your way.

Thanks to all of you for your continued comments and support.

Shit shit shit shit shit shit shit

2008-05-21T11:19:00.000-07:00

I feel shitty this morning. My back hurts, and I'm worried it's cancer. Then I worry it's psychosomatic. I feel nauseous all the time, and we cancelled chemo, so that's not it. I think I'm just sick about this diagnosis, scared completely out of my brains, continuing to hear words like "palliative care" which is a nice way to say, "We'll make you the most comfortable we can while you die." I'm a wreck.

So, the news. We went the the Cancer Center at CU in Denver yesterday. Dr. Tang was very nice. He asked about what we do for a living, which made me feel very human and seen, something that those of you who know me well know I value in a human being--the willingness to see. He looked at the identical pathology and PET scan results and recommended hormonal therapy before we start chemo. This is a radically different recommendation than what we received in Loveland. So we're confused again, at a decisions crossroads again. I was really pumped about starting chemo--it felt like I was doing something, like it would be a STRONG choice, would kill the cancer while it ravaged my body. This doctor--indeed, the whole staff--nurse, clinical trials manager--were calm, not rushed, not dire, not at all hopeless. Clark felt vindicated. I remain confused.

As is per my usual, I'm scared to upset the people who worked so hard to get me into get a port this morning and into chemo later this morning. I called to cancel it all given this new information. I don't know why, when my life is on the line, I'm still scared to upset people. It's ingrained so deeply, apparently, that I can't turn it off.

The doctor in Denver seems to think since I'm not symptomatic that it's too early to start chemo. He also says whether we start chemo now or later doesn't seem to affect outcomes anyway. He seemed to think that hormonal therapy will improve my quality of life now since I'm not symptomatic. It feels like a nice way to say "You're not really dying rapidly yet, so we don't want to make you really sick until we have to." On the other hand, he seems to think the technology has advanced so well that some people can live with metastases to the bone much like people now live with AIDS--as a chronic disease.

I can't think of another word for how I feel right now other than frantic. I find myself being afraid that if we don't do something NOW the cancer is going to spread at lightning speed and before long it will be too far gone for anything to happen.

Yesterday I was brave. Today I'm scared to death. Go figure.

A New Morning

2008-05-20T11:17:00.000-07:00

This morning feels so much more hopeful. Bone metastases seem infinitely more treatable than had it spread to the organs.

Deep breathing is helping, as is holding little Eliza close to my cheek. She's so soft and warm and squishy, especially in the morning. When I told her to go get dressed, she responded per her usual, "NO!" which just made me laugh, those earnest brown eyes so sure.

We watched "My Big Fat Greek Wedding" with the kids last night, and laughed so hard. When Gus started squirting Windex everywhere, Clark commented that maybe we could use Windex on the giant horsey dog so he would quit peeing in the house. Katie said, "Yeah, maybe we can squirt it at mom's breast." Later, Clark commented that the girl's dark humor is mostly because they don't understand, but their thoughts are so beautiful.

If anyone knows how to quilt, send a shout out--Katie wants to create a quilt and I'm about as good at quilting as I am about not swearing--that is to say, I suck badly.

We're off the the CU Cancer Center in Aurora today. I'll give an update later as to what Dr. Tang says--I'm hoping he has an orange mustache, because I will make fun of him.

Running Thoughts from Heather

2008-05-19T11:16:00.000-07:00

I'm stunned and reeling. Is this really happening? I'm so scared I'm going to die. Not scared of death, per se, but really scared not to watch my girls grow up or to grow old with Clark or to be a wildly inappropriate middle-aged woman with all my bad-ass, funky friends.

I'm scared the magazine will die--outside of my kids, it's the first really worthwhile thing I feel like I've done.

Clark and I wonder to each other how faith plays a role in this; indeed, the role of faith becomes much more salient as the level of desperation grows. But how does one work to define or apply a desperate faith? There are the classic stages of grief that we've spoken of, and bargaining is one. It seems to me that wild and frenzied prayers aimed to God qualify as bargaining. If that's the case, is it merely another stage in inevitable grief, or are they as good as the intent with which they're murmured or shrieked?

One of my daughters sobs. The others seem unfazed. Of course the little ones have no way of grasping metastases. But Liloo asks why I'm sad, and Megan understands tears.

I'm conflicted--I vascillate between wanting to be a sarcastic, scathing Heather--incidentally, the one for whom I hold the most affection and admiration--and the docile, accepting Heather who understands everyone's best intent and is kind and affirming to people's genuine outpouring of offers to help. There is almost a superstitious fear that the sarcasm will result in divine disapproval, and inadvertently shorten my life. On the other hand, the docile, accepting self doesn't know how to fight like hell.

And that makes me laugh. Of course I'm conflicted. I started a fucking magazine about the state of conflictedness. If it's nothing else, it's true. True as in, maybe not factual, maybe not even right, but damn true.

Stage Four Diagnosis

2008-05-19T11:11:00.000-07:00

O.k., everyone, here's the news.

It's metastasized to some bones, so that means it's stage 4 cancer, which, in other words, means incurable, but not untreatable.

Here's a quick rundown of our schedule this week:
Tuesday: 1:00pm second opinion with Dr. Tang at CU Denver Health
Wednesday: 9:30am Port Installation (the port will be used to administer the chemotherapy.) Immediately afterwards, I will head to the McKee Cancer Center to have a first round of chemo, which lasts 5 hours.
Thursday: 10:15 2-4 hours of IV fluids at Cancer Center

This may change depending on the outcome of Tuesday's appointment, but that's unlikely.

If you have more questions, feel free to post them here and Clark or I will answer them as we're able. I'll get Clark to list the specific cocktail of drugs for the research-happy among you.

Thank you for all your support and love. This is terrifying and devastating to all of us. We appreciate, in advance, all your love and concern and help.

Heather, Clark and the girls.