Shaking

Today I learned that one of my Warrior Women team members has advanced to stage IV breast cancer.

That's a clinical sentence....let me try it again.

Today I found out that Kristin, an amazing, spirited, incredibly positive (truly, I look like a whiner next to her) warrior, has just learned that the breast cancer she's been fighting for less than a year has come back, and it's in her lungs.

Many of you have heard me mention Kristin's story, but let me retell a little of it. She was diagnosed with breast cancer when she was 6 weeks pregnant. At 8 weeks pregnant, she had a mastectomy. She did AC through her second trimester, and then delivered her baby - a gorgeous baby girl, Ellie...healthy and strong, with more hair than her mama had! - in April. In May, Kristin came and helped out at the yard sale....she's fighting for a cure for everyone, not just herself.

While pregnant, and in chemo, Kristin worked 20 hours a week, taught aerobics (that one blows my mind!), and was a caring mother to daughter Luci and loving wife to Craig. Kristin's kick-ass attitude was to take no prisoners: she is fighting this disease with everything she's got, and she's determined to find a cure by the time our daughters are old enough to worry. I am honored to walk with her as a Warrior Woman.

Kristin is still in chemo - one Taxol left. I do not know what the new treatment plan will look like.

There is nobody fighting breast cancer harder than Kristin; there is nobody with a more positive attitude. The word inspiration is completley overused in the case of cancer survivorship, but really, she's off the charts. Kristin inspires me.

The news that she has another, even harder, battle to fight, feels like a punch in the face. My reaction is physical - when I found out, I thought for a moment I might throw up, and then I burst into real tears. Not little leaking at the eyes tears.....sobbing, wrenching weeping.

I feel outrage, agony, terror, pain, disbelief, shock, fear. I weep for Kristin, and I weep for myself because her path may be my path, too. (Please do not reply to this with platitudes. Sympathy towards these feelings is welcome, of course, but I can not bear to hear "this won't happen to you" right now. Nobody knows what will happen. We hope for the best, but I also fear the worst, and yes, I have a good attitude, but we all know that doesn't necessarily help.)

Today, I weep.

In my Genentech "story" I say that the moment I became a survivor was the moment when, after collapsing to the floor of the grocery store upon hearing the words "you have cancer," I stood up. I said that it is the act of standing up that makes one a survivor. I say, "First, you weep. Then, you stand up."

Today, I'm weeping. Maybe tomorrow I will stand up.

Kristin, I can only imagine what you are feeling right now. I imagine that weeping is part of it. I am certain that you will also stand. Holding your daughters' hands, staring into your husband's eyes, you will find the strength you need. Your strength is deep, and it is there for you. There are many hands reaching out to hold you up when you do not feel strong, but I am certain that there is a well of strength in you that has not yet been tapped. I am so, so sorry that you must seek the depths of that strength.

I am prepared to fight at Kristin's side. She is not a close friend, as we've only met a handful of times, but I am deeply touched by her strength, conviction, and desire to live...in addition to her humor and warmth. She is a Warrior Woman, and I will be a warrior at her side. I will fight for the cure for both of us. I will be there for Kristin and her beautiful family.

My pain is real today, but it's nothing compared to Kristin's. Please think, pray, send karma, or whatever you do in her direction.

I hate cancer. I hate ****'n cancer.

Kristina

PS After today's news, I do not have the desire just now to write about my wonderful camping trip this weekend. I still have much to celebrate, but today all of my thoughts are with Kristin.

Camping

I love camping. Let me repeat that - I LOVE CAMPING!

I love the smell of the woods - the richness of Pacific Northwest soil, created with fir needles, swordfern, moss, salal, and rotting nurse logs is pure ambrosia to me. I love waking up in the wee hours of the morning to hear birds cackling with glee - even the noisy, raucous bluejays make me smile. I love hearing nothing but the occassional pine needle falling on the tent in the middle of the night when all is still, when even a solitary pine needle falling is noticeable because of the stillness. I love getting up in the middle of the night to go to the loo, fumbling for a flashlight and a pair of flip-flops, and discovering that a million stars have come out to play while I was sleeping.

I love watching Tessa roast marshmallows, convinced that heaven is a place where you can roast sticky, messy, sugary treats on sticks over a fire without getting so much as a sideways glance from your parents (that does remind me to pack some wipes, though!). I love padding around in the morning bundled up in long underwear, making coffee (no need to go without just becasue we're in the woods!) on the propane camp stove.

I love sitting around in the middle of the day, with nothing to do but look at a good book, in the shade from the sun. I equally love throwing lunch into a backpack and exploring on foot, away from cars and all things mechanical or computerized. I love glances of wild animals - the cries of "oh look there's a fawn!" and "okay Mr. Raccoon you can come into our camp but stay AWAY from my chocolate" and "can you believe we saw a river otter - I love them!" mixed in with chattering about children's development, house projects, and the other mundane things that make up our lives.

I love that we're going to share this with friends, and that there is certain to be much laughter.

I love being warm and cozy in my sleeping bag at the end of the day, filled with the day's adventures, and fighting sleep because it just feels too good to miss a minute. I also love staying in bed as long as possible in the morning because it's so cozy and the day can wait!

We'll sit around a campfire with our children, watching them learn to love camping. And then we'll tuck them in bed, and we'll have a glass of wine, and we'll remember how relaxing camping can be for us.

Good, good times.

Of course, I still feel lousy but I don't care. I am not going to let this cold take over! Today I managed to get the grocery shopping done and to make the spaghetti sauce and to organize most of the camping stuff, and though I still have more to do I'm convinced, at last, that it will actually GET done. We're optimistic even enough to think that our family can go to C&P for a little hang-out time before Ryan heads to work (he'll join us after work) and Tessa and I meet the other moms & kids in the ferry lineup (we're headed to the peninsula).

Wish us luck!

I have a cold

Bah humbug.

Today we were going to go to the wading pool at Gold Creek with Jessie, and have lunch with Charlotte & Caley, and I am just not feeling up to it. Jessie is still over, but I just don't have the energy to do much because my head is pounding and foggy and I just feel tired and achy and I have a bit of a cough and sore throat.

Poor, poor me. ;-)

Of course, a cold is just a cold. They come, they go. It's a hassle more than anything else, and I'm not needing of any pity - I know what "real" health issues are and this isn't one of them! None-the-less, I feel lousy and I hope that I get better soon. (And I have enough self-pity for this cold that I don't need anyone else's sympathies!)

So, a down day. I'm filling the wading pool for the girls, so they can play in the back yard, and I'm slowly folding laundry and the like. Not a bad day in the sunshine, although not what I had planned. I'd say my energy is 30% of my normal, but I'm functional!

Tomorrow we're going camping. I am not going to let this stupid cold get in my way, although the prospect of grocery shopping, making meals in advance, and packing up the entire car does have me exhausted before I begin. One foot in front of the other....!

Preschool

I'm starting to think about fall, and it's barely August...!

Tessa's preschool schedule is:
Tuesday, 12:15-3pm
Thursday, 12:15-3pm
Friday, 8:45am-11:30am

I have to figure out how to use my "off" time effectively, and how the new routine will look. I'm hoping that we can walk Shep to preschool with Tessa each day, which will be good for the environment (not driving the car), good quality time with Tessa and I, good exercise, and (of course) very happy for Shep. The preschool is perhaps a mile away, and that's the perfect distance as long as it's not sleeting. (Rain is fun for puddles, snow is fun, but sleet....brrr and yuck!) And once Tessa's in school, I can work out, run errands, write, clean the house, get a job, do volunteer work....oh wait, that's 15 hours a day I've just filled up! Well, I'll come up with something. :-)

Trying to enjoy summer days, but still thinking ahead....

PS Mom, I posted this here because you'd asked about Tessa's schedule next year. Here it is!

Wednesday

I'm struggling with a headache/cold/minor cough....and I wish they'd all go away. Some minutes I feel absolutely normal (this morning Tessa and I went to the Junction; she rode her bike and I walked/jogged beside her), and other minutes I feel like my head will explode. What's with that?! I'm low energy, and my to-do list seems even longer than usual, which is stressful. Normal, though!

We're getting ready for a little camping trip this weekend, and I'm excited to spend the night in a tent. Camping with a child and a dog is a little different than what we used to do, but it's wonderful and I'm looking forward to it. Some friends are joining us, and it promises to be a good time. Fingers crossed for good weather.

Shep went to the vet yesterday for a check-up, routine shots, and toenail trim. He is doing well, and his foot is healing nicely. It's still a "Frankenfoot" and always will be (scars galore, and scar tissue instead of a pad) but he is a happy pup who loves nothing more than to run around with his people and any passing dog, and we are grateful that despite the injury, and the horrific expenses it incurred, he is well. While he was healing it seemed to take forever (in reality, it was a couple of months before his skin grew back), but it's in the past now. These things happen, and they're horribly stressful of course, but it could have been worse. He still drives me nuts, but I do love him!

(Our thoughts go out to Zuma, Krystal's dog, who has her own injury right now, and to our extended family members who find themselves involved in this fiasco. I hope that forgiveness can be offered on all sides, and that all family members can see that each person involved has a good heart and does not/did not have negative intent. Emotions run high when beloved dogs are involved, and when expense is involved, and this is understandable. Family is forever, though, and I hope that everyone can work it out.)

Tessa is loving her bicycle, and sings the songs from "Sally Jean, The Bicycle Queen" (a favorite book) when she's perched atop her bike seat. She creates quite the picture when she's got her long (she won't let us cut it!) blond hair streaming behind her from under her helmet, wearing a skirt (ever the girly-girl, even when she's sporty), her bike-basket filled with stuffed animals, dandelions picked along the way, pedaling fast. The bike - a wonderful hand-me-down from Ellie & Molly - is a girl's dream, all pink and purple and white with sparkles and lovely streamers on the handlebars. Tessa's getting better on it, and though she still needs her training wheels she's getting much more confident and I often have to jog to keep up with her. She's learned how to slow herself and to stop (important skills!), and she goes over small bumps with ease now. She still shrieks when she's scared on the bike, but we've come a long way, and she's so proud of herself. It makes me feel a mother's joy to watch her attain this new skill, and to see her absolute delight.

More to say, but my head is entirely foggy this afternoon and I have a lot to do, anyway. Off to the races!

Love,
Kristina

Doubt - change of plan?

At first, when we started talking about renting out our basement, I was 100% for it. It seemed so easy, so simple, so perfect!

And now, perhaps because reality is setting in, I'm filled with doubt.

Do I really want to share our house? And if we do, is it worth it? How much money will we make each month after expenses (we need to buy a stove, doors, carpeting, paint, etc) and after utilities, taxes, fees and permits? Our basement is not deluxe, and I'm the first to admit that, so I am wondering if it's really worth $700. Am I really willing to give up so much for such a small amount of money?

Do we want to give up our family room, our guest room, and our second bathroom? In addition to giving up that space, we would be giving up our ability to find a quiet corner for some down time - our bedroom has french doors leading to the living room, and sound and light transmit through them. Noise transmits from upstairs to down and vice versa; do we want that? Do we want to share a hot water tank? Our yard?

But if we don't rent out our basement, exactly how should we go about earning some extra cash?

We could cut back on expenses. I just don't know how well we can do this. We're not exactly spending money willy-nilly right now...

Ideally, Genentech would offer me one speaking engagement per month, and this would allow us to budget better. I find the work for Genentech incredibly satisfying, and I feel that I have a talent for what they need me for, and I like the "now and then" nature of the work because it doesn't require me to set up daycare for Tessa. But if that's not going to happen (I am going to NC for an engagement in October, but that's only 4 engagements for 2007, not 12) then what? I could tutor students in high school English, I could seek part time employment, I could....what? I'm mulling it over at this time.

Tessa goes to kindergarten in a year, and that factors into this, too. I want to be available for her this year.

So, there is a lot on my mind. A lot to work through. I'm filled with doubt on every prospect - I see pros and cons for all, and so I (we) have to work it through. Stay tuned!

Three left

The title of this post makes me think back to chemo and radiation, when I was counting down. For chemo, the starting number was 16, for radiation it was 33, and, if my calculations are correct, I am counting down from 43 for Herceptin. If I've counted accurately, then I've completed 40 Herceptin appointments.

44 times going to the treatment center (40 Herceptin plus the 4 chemos that came before I started Herceptin) for a drug that is infused through an IV. Forty-four times being poked with a needle and receiving an IV, either through the port or through my arm. Forty-four times hearing the stories of other patients. Forty-four times having to squash the fear that rises in my throat; forty-four times having to remind myself that I'm okay that it's not me that I'm doingeverythingIcan and reminding myself, if possible, not to hyperventilate. I've been successful so far with keeping my emotions relatively controlled; I do not fight the nurses, I do not cry, I do not refuse to go.

For some reason, as I approach the end of my Herceptin treatment, it's getting harder for me each time I go to the treatment center. No side effects from Herceptin that I am aware of, and my veins complied this time, and life is good....but still, Cancerland is Cancerland.

Off to better things today...!

Four more Herceptin

Tomorrow I get my fourth-to-last Herceptin. My last one will be September 27, and I am counting down the days.

I am so, so, so tired of being in Cancerland. I have to psych myself up to go to the appointment. Last time I got 5 needles because my veins weren't compliant, but that's the least of it. I always overhear some horrible conversation about cancer running rampant in someone's body, or hear someone crying, or hear a nurse making hospice (end of life) arrangements on the phone for a patient, or someone throws up, or something. It's no way to spend the morning, I tell you that. Bah humbug.

Herceptin is a wonderful drug. I'm glad to get it. I believe in it, and it's worth it. But I hate Cancerland.

MIL Apartment Available in West Seattle!

Ryan and I have reached the decision that our lives would be better with some extra cash. (That shouldn't be a surprise to anyone - everyone can use extra cash!) We are very fortunate in that our house has a built-in mother-in-law apartment, and so we're going to rent it out for some extra income. We feel good about this decision, as it prevents me from returning to work, and it's an asset we already have, so we might as well make use of it. Our house is big enough for us even without the basement - we have tons of storage in our attic, Tessa's room is a large play-space, and we still have the living room and dining room for entertaining. We are so fortunate to have this option!

Anyway, here's the email I just sent out to a few friends to announce that we're starting to look for a tenant; I'm putting it here because you just never know who might be readint this and looking for a place to live. Please send me your referrals for people who might want a quiet place to live, close to the shops, near the bus line, in a great part of West Seattle.

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Hello, friends!

Do you know anyone who might be looking for a quiet place in West Seattle?
Ryan and I have decided that we are going to prepare our basement (which already has a kitchen, bathroom with shower, bedroom, and living room) for rent to bring in some extra rental income. We're doing some small upgrades (buying a stove, new flooring in the kitchen, installing a new door for the downstairs entrance, paint, etc.), and hope to have it ready for a tenant in mid-August or thereabouts, hopefully to have someone move in by September 1. The apartment is 1000+ sq. feet, and all utilities (including basic cable and internet access; no phone included) will be included in the rental cost; we will share the laundry facilities. A cat would be welcome; no dogs, please (our one dog is enough!). Our ideal tenant would be a single woman, but we don't discriminate. ;-) Absolutely no smoking.

We haven't yet determined the fair rental value, but we're working on that and getting some comps to compare it to (looking at about $700/month). Right now I thought I'd start with word of mouth to see if any of you knew someone who might be interested.

If you know anyone who might be interested, please let us know or pass along this message! We won't be prepared to show the place until mid-August, but I hope to generate some interest before then. :-) Anyone interested can email me at rykri@comcast.net .

Thanks!
Kristina

Love this graphic

Someone on the YSC boards had this as part of their signature. I am feeling decidedly UN-Wonderwoman-ish today, but still love this picture.

At the aquarium today

Today, Tessa and I met up with cousin Caleb, Grammy and Grandpa at the aquarium. As you can see from these pictures, a good time was had by all!

After the aquarium, Tessa and I caught the water taxi home, stopping at "Coffee to a Tea" for cupcakes and Husky Deli for ice cream, and we came home and got Ryan's birthday dinner ready. (His actual birthday is Monday, but since that's a weeknight we celebrated a bit early with Paul & Libby.) It was lovely to spend a relaxed evening with Paul & Libby.

Tessa was completely worn out by the end, but happy from her busy day. Me too!

Tessa

Ryan said that his dad would look at this shot and have the perfect advice for Tessa - "Wait. Wait. Wait some more before you swing!" Good advice if she'll follow it, but actually hitting the ball wasn't important today. Today, Ryan got his first father-daughter pitching session, and I'm not sure who was happier about it, because both of them were glowing. Happy days!

Tessa getting tips on baseball from Daddy. (This time the fashion accessory is a Hawaiian flower barette.) Ryan, dressed in bike gear and fresh from his ride, came home hungry but had to delay his dinner because the sweet call of "Daddy, will you play baseball with me? I can run all of the bases - first, second, third, and sixth!" was too wonderful to resist. Tessa had her first go at baseball today at her YMCA "camp" and she loved it. Never mind that when I watched she was mostly drawing pictures in the dust behind the pitcher's mound...in her head, she's a baseball star.

Tessa at her first day of soccer, showing off her new YMCA camp shirt and her new shin guards. Oh, yes, and wearing kitty ears and posing. She made me laugh - but it was easy to spot her on the field! She is really enjoying soccer, and is getting better at kicking the ball around with a small (small!) degree of control.

This is of Tessa at the hospital on July 4. Notice that SHE has color in her cheeks, but Ryan is pale (as was I!). By the time we got to emergency, Tessa was feeling better to some degree, but both her parents were pretty freaked out. In this shot, Tessa is wearing her "4th of July" outfit - the one she was going to wear at the parade - and she's got her hand taped to the IV board. Ugh - I hope we don't have to do that any time soon.

It's late and I want to go to bed, but I wanted to share these pics. Have a good night!

Training

I am just home (well, okay, I've been home for a while now) from a great training walk with Heather (ironically, she's not on the team, but she was up for the walk and I was so glad for the company!) along Alki. We did about 7.5 miles and it felt great to get out and move. It's time for me to really train for the 3-Day, and though 7.5 miles isn't impressive in the face of 60 miles, it's a nice little walk none-the-less. The weather was gorgeous, Alki was sparkling with sun on the water and people milling all over the place, and it was great to catch up with Heather without the interruptions of little kids. (Love those children, but they're not the best at allowing adult conversations!)

And maybe this will help my muffin-top to go away. And go away NOW! Ryan's reunion is in 18 days and I'm going to lose five pounds. I'm DETERMINED! :-) Not just for the reunion, but it's a nice goal to have in front of me, and I'd like to feel good in a bathing suit for the rest of the summer.

In other working out news...
My body is not letting me train for a marathon. I'm having to revise my 2007 goal to be running a 1/2 marathon, no walking (by this I mean 1 minute walk breaks but not walking miles). I may be able to run/walk a marathon in 2007, but I won't be able to run the whole thing. My body is just not cooperating....too much fatigue and joint pain from the **** drugs. Grrr.

A summer day in West Seattle

This morning, Tessa had soccer class at the Delridge Playfield, and afterwards we played at the play structure with Anna & Beth. Then, Tessa and I popped in on Marilyn to meet the new baby (already three weeks old!) and to deliver a small gift (thank you to Mom S. for doing the embroidery!). Then, a quick trip the grocery store and lunch, then off to Alki to meet Molly & Ellie for some beach time. Tessa was a bit of a grump (grrr that's an understatement) and it was a bit windy at Alki despite the warmth, so we headed back to our house and the girls played in the wading pool in the back yard while Molly and I chatted.

Then, a few chores around the house, and I made dinner and packed it up as a picnic. Ryan got home, showered (he rode his bike to work today), and then we loaded up the jogging stroller, snapped a leash on Shep, and walked the mile or mile and a half to Lowman Beach Park for a picnic (and time for Tessa to play on the swings). Then, home again, visiting with neighbors out in their yards as we passed by, and time to tuck Tessa in to bed. In a moment, Ryan and I will go cool off a bit in the back yard by laying out in the hammock, enjoying the evening breeze, and then I think I'm off to bed!

This is my idea of a good day. Jam packed, but also full of fun.

I think that Tessa is still feeling slightly off after her illness; she's not sick at all but she's also not recovered, as she's a bit more tired than usual and a bit more grumpy than usual (oh dear). I think she enjoyed the stroller ride tonight - out enjoying the summer air, but not as active.

I'm counting my points on Weight Watchers and hoping to see improvements SOON. My muffin-top needs to go away immediately - ugh. Having gotten rid of it once I know I can do it again but the sooner the better! Ryan's high school reunion is at the end of the month and I intend to look smashing. ;-)

Yesterday we did quite a bit of yard work - trust me, the yard REALLY needed it! - and I'm so pleased with the results....it's amazing what a few hours of work can do. I enjoy sitting out back so much more when the weeds are pulled and the plants are perky from being watered and the walkway is swept, etc. It makes me really enjoy being at home, and count my blessings, rather than just thinking "oh I have so much to do". Of course, there is much work still to be done, but now I see the progress and I like that. :-)

Have a good night!

(Something is going on with Blogger where I can't title my posts. Whatever!)

Recovery

This week I'm in recovery from the preceeding week and a half. I'm coming down from the terror of Tessa's illness and my scan-scare, and trying to forge ahead.

Yesterday, I did 12 miles around Greenlake (4.5 running, walking the rest) and we went to a birthday party for Jackson & Carter (great to see the Landahl & Neufeld & Chin clans). Today, Ryan watched Paul do a time trial and then hooked up with Tessa and I at the zoo, where we were enjoying Daven's Safari-style birthday party. Now we're home, and I'm procrastinating for a little while before doing some heavy weeding (ugh the garden is a mess!).

Recovery. This weekend is going well, though Tessa's still a bit tired and still looks so painfully thin to me (her pants were falling off her rear-end today...she really did lose some weight, and she's so thin to begin with)...she's also a bit grumpy after her week of illness. But it's all okay, and this week promises to deliver more!

This is a different version of the same post, below. This one I wrote to the YSC boards. Writing as therapy, I suppose. Maybe by writing it I can write it out of my system.

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I just have to rant.

I had Herceptin today. My onc ran into me and said, "I knew you'd be in and I wanted to discuss something with you." (uh-oh) She said, "It's really probably nothing but there was a 2.2cm spot on your chest on your last (6/14) MRI, and you need an X-ray to confirm that it's nothing."

CRAP.

She repeated all the things that it probably was (probably not mets), and she's so fabulous and wonderful and thorough, and reassuring, but the thing is, nothing can reassure me any more. The statistics are almost meaningless to me. I mean, I've heard "it's probably nothing" before, and I got breast cancer (and double mastectomies, chemo, etc.). "Probably" doesn't mean a damn thing to me any more when it comes to this beast.

So then I sat through Herceptin, x-ray paperwork in my hand, telling myself to stop having a fit and to calm down. Of course, that didn't work.

And it was nothing. The tech said, "Don't bug your doc until Monday at earliest" but, not being overly compliant with such things and being utterly unwilling to have another ruined weekend, I marched straight to my doc's office and asked if she could pull up the results (thank God for computers with instant information). She viewed the x-rays, and declared that I "have the loveliest lungs [she's] ever seen." Nothing to worry about.

But now I'm exhausted, and madder than hell.I have fought so hard to put this behind me. I wore a sassy cleavage-revealing dress to Herceptin today, proving to myself and the world that I Do Not Look Like a Cancer Patient. I wanted to show everyone in the treatment center that they, too, could be healthy and look great again. I wanted to prove to myself that I did not fit in at the chemo ward. I wanted to look like -and feel like- the antithesis of a cancer patient.

But the thing that makes me mad, furious, boiling, is that there is not a damn thing that I can do on the inside to prevent the fear from boiling over again. The cancer is in charge, not me, and a pretty, hip dress and lip gloss can fool the world, but if cancer wants to come back, it will. Simple as that. I can dress to impress (to impress myself, mostly) and I can run and mother my daughter and volunteer and fundraise and speak for the cause and it doesn't make a damn bit of difference. I did a ton of treatment, and that may not make a difference either.Two years out, and cancer still knows how to grab me by the neck and shove me against the wall, just for fun, just to mess with me. The fact that cancer walked away without leaving a mark this time doesn't placate me....I'm just so damn tired of being messed with. And I'm tired to realize that I just have to accept this behaviour, to live with the fear when it arises, and to acknowledge that it's out of my hands.

Cancer is a bully and I can't report him to the principal to get him expelled. Instead, I slink along the hallways, furtively glancing left and right to see if he's there, and with every scan or test I feel him throw me into the lockers and frisk me for my lunch money. The fact that he chuckles nastily and then walks away without leaving a bruise is of little consolation; I know that next time I might get beaten senseless.(And I have no idea where that analogy came from. I was never bullied....!)

So I'm venting, ranting, raging at the unfairness of it all. Two years out and I'm doing everything right and I'm cancer free and god-damn-it I want to be past all of this! I want to be invincible, and you'd think it wouldn't surprise me any more to remember how mortal I am, but each reminder hurts just as much as the one before.Damnit.

(And for the girls out there who are newer at this than I, I will add just one little tiny PollyAnna note at the bottom. Most days are much, much, much better than this. Sometimes I do forget about the bully....and that's perhaps why I'm so mad about him today. I thought he was gone for good, or at least for a few more months, and he surprised me. I don't like that kind of surprise. But most days are pretty darn good, not like what I'm describing here. Today was just lousy.)

Thanks for letting me rage at it all. I thought if anyone understood, it would be you ladies.

My nerves are frazzled.

To open, everything is fine, so I'm not trying to freak anyone out by this post.

But I'm completely frazzled.

After the long week plus of Tessa's illness, I'm just ready to be relaxed and stop worrying. I arranged childcare for Tessa this morning, and then headed to my Herceptin appointment.

First thing at my appointment, I ran into my oncologist, who said, "I need to talk to you. It's probably nothing, but the MRI showed a 2.2cm spot on your lung and we need to check it out; since you're here I'd like you to get an X-ray today after your Herceptin appointment."

Spot on my lung? This falls into the category of Very, Very Bad Things and scared me to death. Sure, she said it was probably nothing, but I've been told "it's probably nothing before" and then I got breast cancer and all that came with it. "It's probably nothing" is only very slightly reassuring, but not nearly enough to stop my stomach from somersaulting. Breast cancer often metastasizes to the lungs (as well as bone, liver, and brain) and so this is exactly the kind of news I'm frightened of getting.

So I went to my Herceptin appointment and tried to will myself to stay calm. Then, I went to the radiology department, stripped into one of those horrible blue backless gowns, and got my chest X-rayed, front and side. After the appointment, I asked the tech (who is forbidden from interpreting my results) how soon my doctor would have the results, and she said, "Well, I've already got them entered into the computer but I wouldn't bug your doc until Monday at the earliest." I smiled and thanked her, then ignored that advice completely (there was NO way I was going to sit on pins and needles wondering if the cancer had returned, worse than ever) and marched straight to Dr. Rinn's office.

Dr. Rinn, lovely woman that she is, understood completely, and looked up the X-rays on the spot. "I've never seen lungs so lovely," she told me, and all is clear. Nothing to be concerned about.

And yet, I'm so freakin' exhausted. This whole process wears me out.

Today I put on a cute dress and flip-flops to go to Herceptin. I was determined to look as non-cancer-ish as possible. The dress is slightly low-cut, to reveal cleavage. It has a saucy band of bright color, but is otherwise a hip black color. In it, I feel good - girly, feminine, and pretty. It's the kind of dress that cancer patients do not wear; breast cancer patients, I've noticed, tend to wear things up to their necks; they tend to wear sweats to treatment. (I did - it was comfortable and I didn't exactly feel like drawing attention to my fat, bald self. I didn't feel pretty; I didn't dress to draw attention to my non-existant breasts.)

I realize now that the dress was meant to ward off my own bad feelings about cancer, to prove to myself that I'd come so far. To walk into the waiting room at the treatment center and have eyes turn toward me, the same look on every face, "What is SHE doing here? She looks so healthy! She doesn't look like a cancer patient!"

But the dress is only a disguise, and I'm horrified to remember that no matter what I wear, no matter how long I put this behind me, no matter how long my hair gets, now matter how healthy I look, I am still a cancer patient. I still get MRIs and X-rays and scans and I'm still covered in scars and I still have no guarantees. The cancer isn't fooled by my outfits, or my lip gloss. It's not afraid of my kick-ass attitude, and it only smiles slyly when I put on my PollyAnna mood and tell everyone, "I believe that the cancer is gone, never to return. Just look at how hard I fought to keep it away! Look how much treatment I did, above and beyond the standard!" Cancer knows what cancer knows. It might not come back. But it might.

I hate this simple fact. I hate that the little lurking thought - which was not just lurking, but shouting at me today - that the cancer might come back never completely disappears. I can run, I can mother, I can write, I can volunteer, I can fundraise, I can walk, but I can't earn a guarantee.

I do believe that the cancer is gone. But today, my fear was real, and justified. I got another reprieve: all is well. But it will take a while for my heart to stop beating so fast. It will take a while to recover from the fact that I have, once again, been faced with my fears head on. I can't describe this feeling to anyone who hasn't been there him/herself. If you don't know this kind of fear, I don't want to let you in on it. It's bone chilling, gut wrenching, mind blowing. It comes and it goes, but when it comes, it takes my breath away.

Breathe in, breathe out. I'm recovering from the day, but it saps my energy more than I can describe.

Now off to care for my daughter, who is yelling at me to get a new string for her beading project. Despite my mental collapse (ha!), life goes on, and duty calls.

Love,
Kristina

Still well

This morning Tessa is doing well. She ate all her cereal, drank all her milk, and dressed herself for the day. The day includes a playdate with Jessie & Emma while I go to get Herceptin at the hospital; I often bring her to this appointment, but a) she hates it, b) it's hard to entertain her while I have an IV, and most importantly c) there are too many immune-compromised people in a chemo ward to bring in a kid who has been sick for a week. THANK YOU to Katie for covering for me!

I'm hopeful that today will go well. I'm tired, physically and emotionally, after a week and a half of illness in the house (cabin). I want my summer, and I want it now!

I've received many phone calls offering love and support for Tessa....THANK YOU. Your emails and calls have meant the world to me.

Love,
Kristina

All is well?

I put the question mark in the title because who knows what is up any more, but we are home after another very uneventful doctor's visit (our fourth this week for Tessa). The doc looked at all of Tessa's vitals, and said, "She probably has/had a virus. No concern at this time," which is what each appointment tells us. I would feel like a fool for going in today except that the nurse at Children's had been so adamant...and I'd rather go too much than miss something important.

Tessa had a relatively good dinner, not quite her usual but her appetite is returning. She's going to bed right now and complained of a tummy ache again but this time it passed quickly - who knows, maybe she has gas! This virus is of an unknown quality and that makes me nervous but it seems that it is disappearing as mysteriously as it arrived.

We hope for a normal day tomorrow. Katie will watch Tessa so that I can go to Herceptin, and hopefully the day will be uneventful. I got caught up on a lot of chores today - laundry, sweeping, vacuuming, bathroom, some dusting (where on earth does so much dust come from?!) and even organized Tessa's room a little and purged some stuff from her room, and after the doc we went to the grocery store for the first time since returning from Orcas, so the house is relatively caught up at last. Tomorrow maybe I'll put up the wading pool and Tessa can run with the dogs in the back yard and I will do some weeding....we'll see!

Love,
Kristina

Here we go again...

After talking to Children's about the lab results (nothing unusual except that her counts still show that she's got an inflammation somewhere in her system...same as before...) about Tessa's tummy pain, crying, and subsequent napping (she's been in bed since 11:30ish), they said, "Bring her back here today or go to your primary care doc today" and since I'm not big on hospital waiting rooms :-( we have the first available appointment with the pediatrician, at 4:5opm today.

Tessa is still sleeping. No signs of fever.

I have Herceptin at 3:30pm today and I had to reschedule for tomorrow at 9:30am. I pray that by then this will be resolved. This SUCKS.

FYI, since she has pain on one side of her abdomen, I looked up appendicitis online. Her symptoms do not correspond.

Now what?

Tessa woke up today crabby, but I sort of expected this because after a week of us saying "yes dear" to her every request ("You want pizza? Sure!" and then when she ate literally two bites, "oh well do you want anything else?") due to her illness, we expected "re-entry" (Katie's term for it) issues. So, the bad, bossy, whiney mood didn't strike me as too unusual.

(It didn't grate on my nerves any less, but that's another post!)

Anyway, at about 11:30 this morning, Tessa started crying and told me she had a stomach ache, on one side of her abdomen. Then she went to bed and went to sleep.

This, to put it bluntly, sucks. I've got a call in to the nurse. What do I worry about next?! No fever right now, but....

I'm hanging in there. While she sleeps, I'm scrubbing things and putting things away and trying to get caught up, so at least there's progress there. But I don't like this, not one bit.

Home again and a sigh of relief

We are home from Children's, exhausted, but well.

The short version: After further blood work, another urine test, a chest x-ray, an some kind of awful nasal aspiration (vacuum tubes into Tessa's sinuses....horrible), Tessa started to perk up. The fever is gone, her energy is returning, and the tests show that some of her counts (including the CRP I mentioned earlier) are falling back towards normal ranges.

We were released before all of the tests come in as some won't be done until tomorrow at noon, but they've ruled out mono, Epstein-Barr (which is another name for mono?), UTIs, pneumonia, and some other concerns. At this point the diagnosis is "unspecified viral infection" or, in short, "we think it might be a virus." As long as it disappears and doesn't come back, this diagnosis is okay with me!

I'm exhausted. I held Tessa while she cried and tried not to think about the what if's as they poked and prodded her. I didn't enjoy that, and nor did Ryan.

Afterwards, Tessa was recovered enough to pop in at C&P for their BBQ, and we got to catch up with a few friends there and Tessa got to be a regular kid instead of hospital-kid. This is a major improvement, needless to say.

And now we're all exhausted. A quiet night for us - no fireworks, no parties - and we will just go to bed early. Tomorrow, I'll unpack from Orcas, arrange playdates, clean the house....and live in the gratitude that it looks like Tessa is healthy once again.

Thank you for your thoughts and prayers. The last time I was at Children's was to visit nephew Josiah when he had cancer.....dark days. I am grateful that this was a very different experience.

Love,
Kristina

Getting ready to go to Children's

I don't want to face this day. We were going to go to the Admiral 4th of July Parade this morning, and we bought streamers and flags to decorate Tessa's bike, and she was going to throw candy from her bike basket. Then we were going to go to the C&P BBQ with friends & neighbors, and then we were going to BBQ with the Hisatomi's. It sounded like an amazing, wonderful day. We'd even talked about letting Tessa nap after dinner, and then walking her in the stroller to Alki to see the fireworks.

Instead, we have to face needles, fevers, the ER, and scans searching for "something." I hate this. Of course all of my own experiences leading up to this don't make it any easier; I can't help but remember what it was like to see my own scan results up on the light box as the doctor talked about tumors and malignancy for the first time. Will today be like that day?

If there is something awful, it will be worse than the first time. Worse, for two reasons. One, because I would know how awful the journey could become....very little is left to the imagination, having been down that road already. Two, because it's Tessa. I would go through it myself ten more times rather than have these fears for HER.

And yes, I know, this could still be nothing. I'm praying for that. It's just that I know how "something" can go, and it scares me more than I can say.

I'm off to put on a good face, to gather a bag of toys, and to take my daughter to the ER. Please wish us luck and health, and that this will become just a bad memory and nothing more.

What is CRP?

From the web:
Normally there is no CRP in blood serum. From Lab Tests Online, "a high or increasing amount of CRP in your blood suggests that you have an acute infection or inflammation. Although a result above 1 mg/dL is usually considered high for CRP, most infections and inflammations result in CRP levels above 10 mg/dL".
A positive CRP may be an indicator of several conditions, including:
rheumatoid arthritis
rheumatic fever
cancer
tuberculosis
pneumonia
heart attack
lupus

Well, I wish I could say all that made me feel better. :-( Normal is 0 to 0.5 and Tessa's is 18.9.

Tessa update

We don't know too much.

It is not definitively a virus. It may be, but it may not be.

The WBC and CBC is all normal. Her CRP is elevated to 18.9 (normal is 0-0.5), her polys are slightly high. I have little idea what this means and I'll be researching it online in just a second.

The doc said that there wouldn't be much benefit in taking her to the hospital at midnight, so she's arranging for us to check in tomorrow morning. Tessa will get a chest x-ray to check for pneumonia and "other things" and we'll go from there.

I am trying very hard not to over-react. I am also trying hard not to throw up from the anxiety.

No update yet

I spoke to the doctor on call a few minutes ago, and the lab work isn't done. So we're still waiting, though it's past the time I'd been lead to expect.

I am not patient, and this is difficult.

Tessa is sick and I'm scared

We are back from Orcas Island tonight; we got home about 5pm.

Tessa has had a fever since our first day on Orcas. It spiked at 103.7 (digital mouth therm.) on Saturday, and it's remained above 100 for days. We have been on the phone almost every day with the nurse at our local clinic, and yesterday we took Tessa to the doctor on Orcas Island. He couldn't find anything wrong, other than her fever, lethargy, achiness, and lack of appetite.

Tessa has spent much of the past week -and it's been a full week- lying in my arms, sleeping, or sitting still, not even wanting stories. She rallies for a couple of hours to play Play-Doh or something, and then she drops off again. She naps for hours each day, multiple times per day. Over the past two days, when she should have been getting better, she has gotten worse than before. She doesn't even want to hear stories, she just sits with a glassy look most of the time. She slept the entire ferry ride, she slept on the way home, she asked to go to bed as soon as we got home.

We made an appointment with our local doctor as soon as we got home, and we saw them at 6:20pm...I just got home 20 minutes ago.

Unexplained fever lasting a week is concerning. Tessa's urine tests come out normal, and her eyes, ears, nose, mouth all look normal. Her breathing is normal, her heart sounds good. Finally, we had to do a blood draw (Tessa cried and shook in my arms, allowing the test to happen but still screaming "Stop! Please stop!" and it was awful) and now we are awaiting the test results. Her in-ear temp was 102.5 today.

It's 50/50 right now if we have to go to Children's Hospital tonight for more tests....x-rays and scans. This makes me sick to my stomach. I know what x-rays can look for, and it's not all about broken bones. I've had too many scans not to be scared at their mention.

I should hear test results by 10pm - they rushed the blood over to Children's Hospital with a "stat" order...a courrier was coming to get it. If the blood counts indicate a virus, we're in the clear (it won't mean that Tessa's better, just that it's "just a virus") and if the CBC doesn't indicate a virus then we don't know what it means, and we'll have to do more tests to rule everything out.

Please pray that my daughter is well. Please wish, hope, cross your fingers, send good thoughts, and pray that she is healthy, and that this is "just one of those things" and nothing to be concerned about. Please pray that I will be strong and steady and able to smile for her, and that my fears will not show, and that I will be brave so that she can be brave.

I'm so scared.

Return of the muffin-top

(I really must be the extrovert that I think I am....am I really writing about this online?!)

My muffin-top is back. ARGH! I have been off program, eating whatever I feel like pretty much, and my clothes are tight again. Today I stepped on the scale, and it told me what I already knew....some pounds have crept back on. Dang it!

I can't stand the muffin top. Talk about unflattering - ugh. And the low-rise style that has been so popular is the WORST for someone with a muffin top. And have I mentioned that it's summer and I want to wear clothes that are more revealing - shorts, tank-tops, and even bathing suits? And that I promised myself to wear a bikini all summer? Bikinis and muffin-tops are mortal enemies, that's certain, and they shouldn't be in the same room together. DRAT!

So, hoping to cut my losses, I'm back on Weight Watchers. I'm announcing it publicly in the hope that it will keep me honest, and also to inspire anyone else who is struggling with weight loss....if I can do it, they can too. There's nothing "magic" about how I lost my 40 pounds, and there's nothing "magic" about how I put 10 back on. The only magic is in how I will feel when I lose those pounds again! I know what to do, and how to do it. Time to begin!

Ryan's high school reunion is coming up this summer (end of July) and I completely intend to be the hot wife. I WILL meet my goal, wear a pretty dress, and look good in it. :-)

It's unfortunate that my truth to myself (it's not like these pounds leapt on to my body overnight, and my clothes have been telling me for a few weeks) today, the day before a week at Orcas Island, but that's okay. Better to discover it now than to eat like Bacchas all week and add on even more. Time to pay the piper!

Love,
Kristina

Catching my breath

Life goes by in such a whirlwind that I sometimes wonder when the earth started spinning at double speed; each day is filled to the brim with so many things to do, and we cram as much into the day as possible, but still, every day we run out of time. This is both a blessing and a curse: we're NEVER bored, usually tired, always busy. This is how I like it, but sometimes I just wish that I could slow things down.

Right now, I'm doing my best to do that.

Preschool is finished for the year, swimming lessons are finished for a while (I've decided to spend pool time with Tessa this summer without official lessons), the Race is over, my major 3-Day fundraising events are over (though I am still soliciting funds - I am well short of my goal and would TRULY appreciate any support you can give), I've survived my MRI...and it's time to catch my breath.

Yesterday Tessa and I went to soccer class, then hung out afterwards for a leisurely play-time at the park's play structure nearby, then met friends for coffee in the Junction. The afternoon was reserved for chores, and then we met 3-Day friends at Greenlake for a walk around the lake. After Greenlake, I dropped Tessa off at Ryan's office and they caught the bus home (a grand adventure for TK!), and I went to a Young Survivor's meeting at Gilda's Club. This may seem like a busy day to some, but to me it was a breath of fresh air! We weren't rushed, we spent lots of time out of doors, and I got a bit caught up around the house. A great day, overall.

Today, we went to the gym (I ran on the treadmill while Tessa and Zoe played at the kids' gym), then we hopped in the car and went to the zoo. I'd packed a picnic, and so we had fun hanging out in the grass for our lunch, watching the other families, eating, and even running around some. I brought bubbles, and while I packed up our blanket etc. the girls had a great time blowing bubbles everywhere - such a simple pleasure! We walked all over the zoo - including the incredible butterfly garden - until the girls complained about how tired they were, and then hopped into the car to go to Alki to meet Jenny and drop Zoe off. We came home, did chores for an hour (Tessa was content to hang in her room) and then Heather and kids came over for a simple grilled dinner, more bubble blowing, tree climbing, and relaxing in the back yard (Ryan's out for a bike ride tonight, and Heather's hubby was at a soccer game).

Re-reading this, I realize that I'm as busy as ever...it's just that I don't feel deadlines so much, I don't feel pressure to hurry up, and so many of these activities are for the pure joy of experiencing them with Tessa. These are lovely days, lovely moments, and I am savoring them.

A small moment today: Tessa, as is absolutely appropriate in the summer, was absolutely filthy by evening - her feet were black with dirt, her fingernails thick with dirt as well, smudges of (homemade raspberry orange) popsicle on her face, and a tangle of grass in her hair. It was definitely a bath night - at this rate EVERY night is bath night - and so we took her hair down from the loose bun it had been in, and she hopped into the tub. Down from it's elastic, her hair was full of loose waves, streaked with the colors of honey, straw, sand, and wheat, and I was struck in that moment by her incredible beauty - clear skin, wide, laughing eyes, long legs, and golden body from the sun (despite SPF 50!). It's a mother's pride, certainly, but I don't mean to boast, simply to say that I was struck by my daughter, and she took my breath away with her beauty. Often, I am too busy or it's too chaotic or I'm too preoccupied to really see her in this way, but today I felt that I could see her clearly, and I could enjoy what I was seeing rather than seeing the task list that is usually floating in my vision. (I know that every parent believes his/her child beautiful, and this is only natural and right. It's just that often I'm too busy wiping her face, correcting her manners, dealing with her protests as I brush her hair, or hurrying her up to enjoy her, and today I was able to enjoy her.) She had an impish smile as she jumped into the tub, and I had a wave of satisfaction wash over me that such simple things could be so beautiful and pleasureable. She was smiling and laughing as she took that gorgeous head of summer streaked hair and dunked it into the water over and over, and as she carelessly scrubbed the dirt from her feet, and something about it was absolutely perfect.

No doubt I will find myself struggling not to raise my voice again as soon as tomorrow begins ("Don't do that to the cat!" "Do NOT dump food on the floor!" "I told you several times already you may NOT have chocolate for breakfast, and that's final!" etc.) but I hope that I can carry the simple pleasures of the evening into the next day.

In almost every way, I'm trying to catch my breath. I'm trying to remind myself that I do not have to be go-go-going every minute of the day, and that I can lead a full, rich life even when sitting still. My diagnosis has made me oh-so-aware of my mortality, and I struggle to face that mortality and accept it, and part of that (for me) has included a need to cram as much into each day as humanly possible, so that if my time on earth must be short, then at least it will be full. I don't allow time to slip by without noticing it, because I KNOW that every minute is precious. When I waste my time, or use it poorly, I feel the loss in a way that I never did before. And, I have to say, it's exhausting. This living fully wears me out sometimes, even though it's what I want.

I do all the volunteer work and fundraising because I must; I must make my life meaningful; I must find a way to channel my cancer energy into something positive and worthwhile. Still, it's a hard way to live sometimes, being this hyper-aware all the time.

So, I'm trying to catch my breath. To slow down. To stay as long as we like in the butterfly enclosure at the zoo because we are having fun, and not rush to see every other exhibit. To make a simple meal rather than a more complex one, because then I can chat with Heather more than I spend time in the kitchen. To watch our children get covered in soapy bubbles and grass stains and not worry about it, just allow them to go a little crazy. To attend a survivor meeting and not worry about staying out too late, to not worry about keeping it deep and finding meaning, but just laughing with other women who "get it."

Next week we'll go to Orcas Island - some days just Tessa & I, with Ryan arriving on the weekend - and we will REALLY slow down. Nothing to do sounds pretty darn good. Reading books, going for runs, sipping coffee on the deck, soaking in the hot tub under the stars. I think I'll make pancakes one morning, too. Pancakes sound good to me today....decadent and slow, slightly impractical (unlike my Kashi Good Friends with nonfat milk and fruit that I have pretty uch EVERY morning for breakfast). Yes, I think that one day at the cabin I'll make pancakes, just because. We won't be in a rush, so why not?

Disjointed rambling, perhaps more than usual, but this is what I'm thinking of today. I hope that this evening finds you well, and that you're finding time to stargaze, to sip your coffee slowly, or to watch your daughter get good-and-dirty before bathtime.

I'm SO glad that it's summer!

Love,
Kristina

Race for the Cure

Today was The Day. It was a success! The I AM THE CURE program was wildly successful, and I'm grateful to have been a part of it.

I am exhausted. Absolutely bone tired. The stress of this week - Carmelia's fundraiser, Race for the Cure, and that horrible day of scans - has me completely wiped out.

Next week is a new week, filled with playdates, parks, pools, working out, walking Shep, and the like. I can't wait!

But now, at 2:20pm, I have to go lay down. Exhausted!

My love to Jenny, who ran with me, helped in a thousand ways, and cried with me when the time was right. xoxox

Love,
Kristina

PS I met a 33 year survivor today, as well as a number of 25+ year survivors. Some hugged me, and told me that one day I could walk in their group. They told me that I would make it. I choose to believe them!

It could have been me

Tonight I went out and celebrated my clean MRI with friends, Ryan, and Tessa. I am grateful with every cell of my body that the beast is at bay, and that I have been granted a reprieve. I've had far too many glasses of wine, eaten too much, and laughed deeply with my friends. I've kissed my daughter, held my husband tight. I have much to celebrate.

I came home tonight and read the following post on "the boards" from a young woman - beautiful, strong, positive - who is living with mets. I know it could have been me; I know that I could be in her shoes. I hate that this is what the disease does to people; I hate that anyone could possibly experience this level of grief.

I am eternally grateful that it's not me yet. I am resentful that it must be anyone. I know what breast cancer can do.

When you wonder if you should donate to "the cause," please remember this. Cancer isn't pink ribbons, it's this. It MUST be stopped.
-----------------

Tuesday night, I collapsed with a seizure at home. After several gruesome hours in emerg that I would not wish on a dog, I was diagnosed with nine massive tumours in my brain, which were causing quite a bit of swelling. They now have that under control for the moment and I am on a weekend pass home (hurray) on massive doses of drugs I cannot be bothered to pronounce - steroids, etc.Just to make it all more fun, my eight year old saw the whole thing. He is OK. I had this strange presentiment and luckily called a neighbour over who comforted him. My six year old heard my tortured breathing and is scared of me. Can someone please explain why this monster has to take everything away from me? I so wanted to protect them from this disgusting disease.Nancy, thank you for posting pictures of your head after whole brain radiation which I start on Monday. This site means so much because I knew exactly what my options were even as I lay in emerg. Bless you Nancy for your dignity and your courage and your humour in telling your story. You have no idea what it has meant to me over the last few days to have some idea what is ahead of me.I am remarkably fine considering that my brain looks like a train wreck on an CT. I have a perfectly normal neurological testing now. I seem to function fine. I was dragging my leg and that has gone away entirely.Victory? Well, I did have mine. As I lay gasping for air in this horrible seizure, I was, gruesomely, conscious. I could hear my own horrible breathing growing more and more infrequent. The only time I have ever heard someone breathe like that is when my grandmother died. I thought that was it for me. I have never wanted air so much. I could feel my husband's tears dripping down my face, and I chose to exhale and tell him that I loved him. I chose love over breath itself. Do the same if you have to. Be strong. You have all been so good to me over the last few months.

---------------
Do you hate cancer as much as I do? Do something about it. Race for the Cure is tomorrow - join, donate, SOMETHING. You can donate to my 3-Day website using the link on the right. Do something. NOBODY should have to endure this. Nobody.

I HATE CANCER. This isn't a ploy, this isn't a scam, this is just the way it is. And I hate it.

It could have been me. I have been granted a reprieve, but it could have been me.

No evidence of malignancy - Tears of JOY!

At 11:50am I couldn't stand it any longer, I had to call.

I got put on hold.

Then, after I explained what I was looking for, I got put on hold again.

Then, the receptionist came back and said that the results were ready but I'd have to wait until they faxed them over.

Hold again.

At this point, I was shaking and near a nervous breakdown. Scenerio after scenerio played out in my head. I was parked near Qwest, waiting to go do my volunteer work, and I thought "if it's cancer how will I get this done? How will I do my job today and tomorrow?" which was the first thing that popped into my head, but not nearly as scary as "How could I ever put my family through this again? I don't feel strong enough yet. I'm so scared..." and then the fear stuck and it was just a vibration of fear running through my body.

More holding. More shaking.

To distract myself, I played a little game. "I'll turn on the radio, and whatever song is playing will tell me the answer to my question: am I okay?" I know this is stupid, but I needed SOME kind of distraction.

The song that was playing? "Crazy" by Gnarls Barkley. "You must be crazy," it told me. Well, yes, I knew that already, and didn't need the radio to tell me.

She came back, calling, "Are you still there?" "Yes," I whispered. Now I was really shaking.

She said, "Mumble mumble mumble Dr. Rinn's out of the office so we had another doc take a look but mumble mumble mumble mumble there's no evidence of malignancy. Oh, I'm sorry, I should have said THAT first!"

I broke down and cried, and then, embarrassed, told her that I didn't know why I was crying for GOOD news.

GOOD news. Thank God. This was really, really scary.

And then I went and did set-up at Qwest Field for I AM THE CURE. The race is going to be a HUGE success tomorrow and I can't wait to see it all come together!

Thank you to those of you who went through it with me, and who sent out prayers and thoughts. We've made it through another round, and now we can enjoy the sunshine.

(I hate cancer.)

Love,
Kristina

by noon

I should find out by noon. I'll count on 1pm. By then, I'll know.

I'll be at Qwest Field at that time, but I will update the blog when I have answers...

nothing to report

With a little help from Ativan, I made it through the day yesterday. I don't have any news; they told me that they'd have results in 24-48 hours. I'll start calling at noon today, as I do not have the patience to wait until Monday with this hanging over my head.

I alternate between demobilizing fear and the belief that all is well.

Today I'm off to set up for Race for the Cure, which is tomorrow. I'm excited to see our work come to its culmination - I believe we are doing good things. I AM THE CURE! :-)

interview link

My KJAQ interview is now online:
http://965jackfm.com/pages/505554.php

I'm having a hard day. I can't get the MRI out of my head. But now...I'm off to get ready for the Carmelia's fundraiser (for the 3-Day) tonight. Hopefully that will make me feel better!

Scary thoughts

I just posted this on my survivor website (after a hiatus, I felt drawn to return), and thought I'd risk posting it here.

For friends and family to read this concerns me; I don't want to unnecessarily freak anyone out. The odds are, likely, in my favor that I'm worrying over "nothing." My oncologist has good reason to believe that what I'm worried about is not the case, and I trust her opinions.

But, annually, I have to go for a series of scans. As Thursday approaches, I am a bundle of nerves and emotion. Actually, just trying to identify what those emotions are, to describe them here on my blog, gives me a sudden urge to throw up. I'm pretty sure that I've over-used the word "terrified" on this blog, but it's all I can come up with. My approaching scan terrifies me.

I hate that I'm saying that. I hate that I have not rounded some corner from which I can look back, glowing with wisdom, to inspire those who are behind me in this journey. I'm in a position to inspire women through my work on the 3-Day, the Race for the Cure, and the local Komen office, as well as through Genentech, and I've spent a good deal of the last week telling listeners on the radio how well I feel and how glad I am to have this behind me. MOST of the time, that's true. My life is a testament to how well I feel. But today I find myself, literally, quaking with fear.

So here's the post I wrote to my survivor "friends" on the internet. They have applauded my honesty, and this gives me courage. I think it's important to be honest here, too, despite my best desire to be 100% PollyAnna and to cure myself through positive thinking (ha!).

To those of you who are following behind me, know that this is only part of the truth. Today's fear is palpable (just like a lump...did I really just use that word?!) but hopefully the relief will be just as strong, and then I will be ready to fight for the masses again.
----------------------------
I have not had an MRI in two years, since my initial diagnosis. I have been in recon for a year, so we put it off, and now it's time.

I have a number of small lumps. Tiny, sand-like ones in my incision on the healthy side, and a larger (inch?) one also on the healthy side. We (oncologist and I) suspect that the tiny sand-like ones are sutures that have scar tissue around them, and that the larger one is the edge of the implant. They're relatively new; I only did my implant exchange on Mar 2 and they're since then. I've had regular clinical exams, and my tumor markers are on the low side of normal with a downward trend.

But I won't know that I'm okay until we get it checked out.

I'm scared. My first MRI was a horrible experience...how can anyone enjoy that cold, loud, claustrophobic tube? And knowing that you are there to Look For Cancer? It's creepy, surreal, and awful.I have five appointments on Thursday: oncologist, Herceptin, MRI, MUGA, and physical therapy. I haven't had a day like that in a long time and being in Cancerland that long is freaking me out. Worrying about the lumps is freaking me out.

I haven't felt this scared in a while. I know that it's normal, and that most people freak out for their yearly scans. Knowing that doesn't make it easier, even though it should.I will be asking for an Ativan or equivalent at my onc meeting. I can't go from 8:40am (first appointment) until 4:45pm (end of last appointment) in Cancerland without some help. I can not lie in that tube without screaming without a little help. I'm worried that I will get even a false positive - not unlikely - and that I will lose my mind. I'm worried that I will re-experience my first MRI and hear "Sorry but yes you have cancer and it's more than we thought and probably in the nodes" and that I will have to face another year of torture when I'm most trying to put it all behind me. I am Freaking OUT!

Where's my inner PollyAnna? I need her right now and she's deserting me?!This weekend is Race for the Cure and I'm rolling out I AM THE CURE in Seattle at that program. I have a fundraiser tomorrow night for the 3-Day. I have a survivor support group next week. I'm training again (sciatic appears healed) and ran 50 minutes today for the first time in weeks. I spent part of the day at the beach with my daughter. So why am I doing this to myself? I'm channeling my energy in positive ways but inside I'm a mess.

I'm in a position through my work with Komen to "inspire" women. I've been doing radio and newspaper interviews, and I'm becoming a local voice for Komen. So why, today, do I feel like a sham? I feel like I'm totally faking it and that if anybody knew what I was really thinking I'd scare them instead of inspiring them.

So, ladies, I'm throwing it out to you. Can someone please talk me down? Or remind me that, most likely, by the end of the day on Thursday I will know that things are okay?

interview on the radio

So, as I mentioned before, I was on KJAQ this weekend (8am on a Sunday - not a prime spot!). The interviewer, Kimi, was gracious and kind to give Komen 30 minutes to discuss issues surrounding breast cancer, to put out the plea for joining Race for the Cure (it happens this Saturday!), and to tell my story. Soon, you'll be able to hear it here:
http://www.965jackfm.com/pages/505554.php
(As of today I don't see it but this is where all of Kimi's interviews are posted.)

I am not famous, and perhaps only 2 people in the world heard the interview (Susan & I listened together, despite the kids' protests that it was "booooorrrring" and they wanted to watch TV or listen to kid music) but I'm still proud of it.

I was also on some other stations this weekend, and heard after the fact which ones at which times - here's the info I got:

The Sandusky interviews ran on Sunday, June 10 on the Morning Magazine Show on the stations below. Starting today, listeners can tune into the interviews again on the website, www.warm1069.com There will be a full podcast available for download through the week up until the Race.

Here were the air times for each station on Sunday.

KRWM 106.9 FM - 5:30 am
KKNW 1105 AM - 6:00 am
KWJZ 98.9 FM - 6:30 am
KIXI 880 AM - 6:30 am

Here's a direct link to that interview summary:
http://warm1069.com/rwn.asp?displayOption=&contentGUID={947DD0CE-B54B-4006-A6B2-CC35F0087AF7}&groupName=KRWM%20Cares&siteGUID={AFEDDA3C-2BDA-4E6A-8259-8B3901703883
....and to the MP3 to listen:
http://www.warm1069.com/podcast/media/smm061007.mp3
My fame is, ummm, rather small. But still, if I reached someone and made a difference, then it's all worthwhile!

Cancerland

On Thursday, I have to spend the day in Cancerland.

My schedule on Thursday is:
8:40am Rinn (oncologist)
9am Herceptin
11:45am MUGA
1pm MRI
3:45pm physical therapy
8pm-10pm Cancer Focus Group

Dr. Rinn will be discussing my cholesterol (climbing, probably a side effect of the drugs), my thyroid (out of whack again), and my horrible side effects (Aleve does not relieve my aches and pains, which are getting worse; the menopausal symptoms are horrid, too). Herceptin means needles and an IV which hurts now that I don't have a port; it also means spending time in the chemo ward which is not the most fun place in the world. The MUGA tests to make sure I'm not experiencing early heart failure. The MRI is looking for cancer in my body; I have several lumps in my left breast that are likely leftovers from reconstruction (the edge of the implant, etc.) but we need to be sure. The MRI is a claustrophobic tube with noise as loud as a jet, and I had a dreadful experience when I did it last (two years ago). Because of my recon I haven't done an MRI since my diagnosis, and I'm terrified at what it might find. Physical therapy will actually be a treat because Adrienne is wonderful and can do accupressure and massage to relieve my aches and pains, and she's a joy to be with....I will need her at the end of those other appointments. Then, to earn some extra $, I'm going to a focus group about a breast cancer website at the end of the day. Let's hope that they don't ask me too many intellectual questions at that point!

I hate Cancerland. I like the days where I go to the park with Tessa and her friends much better.

All this makes me want to take a nap while I'm thinking of it. :-(

Kristina

On the radio

This Sunday, listen to me on the radio. I'll be on JACK FM at 8am on Sunday, and I'll be on five stations to be disclosed at other times throughout the day (all the same interview; I did an interview with a local radio conglomerate).

I'll try not to let the fame get to my head. ;-)

Seriously, though, I'm really excited to have the opportunity to share my story, to promote Komen and the Race, and to make a difference.

Kill the beast. Let's end this $*@) disease!

Confirmation that I made the right decision

Much of my treatment since diagnosis has been done on gut instinct. Breast cancer comes in so many varieties, and there are so many varieties of treatment, and nobody is certain which treatments work best together, and which combination of treatments is the most effective. There is a standard of care, of course, but my feeling is that it goes out of date almost as soon as it is announced; there is always something new in the pipeline. New is not always better, of course, but it offers promise....and on that promise, I've made a lot of my treatment decisions.

What do I mean? Well, I've chosen a lot of "optional" treatments. My initial mastectomy was absolutely dictated by my surgeon, who made it clear that my life would be shortened if I did not take that option; my second mastectomy was prophylactic (there was no cancer found in that breast) but I took the option to reduce my risk. Chemo was a necessity; what type of chemo was an option. My optional treatments have included:

- Prophylactic mastectomy (I figure I can't get breast cancer in tissue that they removed!)
- Ovarian suppression to make me post-menopausal; going one step further to remove my ovaries (because my cancer feeds on estrogen, and because of links to ovarian cancer)
- Taking an AI (Femara) instead of Tamoxifen (Femara is proven more effective than tamoxifen in post menopausal women...but since my menopause was artificially induced we can't promise this is true for me, because there are no studies yet on the subject)
- Taking Herceptin for two years instead of one year (this is undergoing study in the HERA trial, but the results won't be out until 2008, which is too late for me....my two years ends in late September of this year)
- Radiation after mastectomy (I had one positive node. If there are four or more positive nodes, radiation is prescribed; for no nodes, no radiation. Since I fell into the gray zone and it made sense to me, I went for radiation.)

I may never know if I would have been cancer free without those treatments, or if my cancer will return despite the treatments....it's a major, major gamble, because none of these treatments is "fun" and they all have side effects that I live with to this day.

However, today I read this:
http://www.lbbc.org/news-detail.asp?section_tag=G&news_id=1288&tr=y&auid=2738600

Here's an excerpt:
The researchers concluded that people who had one to three positive nodes and either a low number of negative nodes, invasion in the lymph vessels or are under 40 had an increased risk of LRR. They suggest that this group may benefit from undergoing the same treatment as people who have had cancer detected in at least four lymph nodes.
What Does This Study Mean For Me?
If you have been diagnosed with breast cancer, have had a mastectomy and have found out that you have one to three positive lymph nodes, you may want to ask your doctor how many negative nodes were found in your axillary lymph node dissection. If you find out that you have a low number of uninvolved nodes, you may want to discuss the option of postmastectomy radiation.
Radiation may kill cancer cells remaining in your lymph nodes or breast that are undetected or dormant now but could cause a recurrence years after. You also may consider this treatment if you have one to three positive nodes and are under 40 or your cancer has traveled into the lymph vessels in your breast. Side effects of radiation include soreness of the skin and fatigue.

I still pay the price of radiation: my skin still hasn't recovered, I still don't have full range of motion, I still get pain in that area. I only had one in twenty-five nodes that was positive, but since I have the additional risk factor of being under 40, this study says that I did the right thing.

I may find out that I've done the wrong treatment at some point. I may find out that the side effects will cause lifetime problems as bad as what they were meant to resolve; I may find out that I will recur anyway despite the treatments. But today, I'm grateful to read that my gut lead me in the right direction, that radiation was probably helpful, and that I can be glad that I made that decision. I am also glad that it's behind me, and I don't have to face making that decision again....what's done is done.

Cancer is not behind me. It is a part of who I am now; my survivorship helps to define me. I am a mother, wife, friend, activist, reader, hiker, member of PEPS, fundraiser, walker, runner, writer, dreamer, optimist....and survivor. Having had cancer influences my thoughts every single day, and perhaps every single minute. It is more of a relief than I can adequately express that sometimes I run into some data or an article that presents a viewpoint that because of my decisions, I will likely survive.

Phew. Let's hope that the next articles reach the same conclusion!

I AM THE CURE

My volunteering at Race for the Cure is coming together - I'm going to be a very busy girl for the next few weeks. I am immensely proud of the work that I'm doing with Komen, and grateful for the opportunity to head up this program...but I will also be hugely relieved when all of the pieces come together. As with most large projects, there are last minute components...and those make me crazy or nervous. But, somehow, it will all come together. I'm looking forward to that moment today!

the end of a long weekend

Ryan has put Tessa to bed; we are all fed, PJ'd, and tired. It was a good weekend: a day of hanging out with Paul & Libby in Edmonds (Ryan & Paul did a long ride, too), and then two days of chores. Usually chores wouldn't excite me so much but we really did make quite a bit of headway on the house: Ryan stained the deck, and it's looking more ready for summer. I did a ton of weeding, and the front bed looks almost acceptable (it had become, really, quite embarrassing it was so weedy) and ready to put in some more plants. Ryan mowed the lawn, and we both cleaned closets and did miscellaneous chores. We practically emptied the guest room closet - all of those old clothes that we thought we'd wear someday but never will are now ready to go out to Goodwill (and alas, our attic is filling up with this stuff again!). I did a ton of filing and tidied up the office - which has been a pet peeve of mine - while Ryan tidied up the laundry room (which doubles as a bike room). All in all, our house looks and feels much more comfortable now and I'm so glad that we did those things.

But I'm TIRED! My goodness! I am not accustomed to manual labor, and the gardening in particular is kicking my butt. It actually feels good, although it's a hurts-so-good kind of thing. I'm proud of the work we accomplished, and glad that our house got the TLC.

There is a lot more work to do - isn't there always? - but I'm inspired to do more of the gardening. Some of my friends have absolutely beautiful gardens, and I think it's time for me to work a little harder on ours. At least to the point where I'm not embarrassed any more. ;-) (The beds with the rhodies, up close to the house, are a disaster still. Hopefully later this week...!)

So tonight my back and shoulders ache, but I don't mind. All in a good day's work!

Love,
Kristina

Just another day

Yesterday was just a normal day. I stayed on plan for Weight Watchers (mostly!), did laundry, cleaned the house a bit, we had a giant playdate at our house (10 kids and 7 moms....that's a big playdate, even around here!), and in the evening we went to C&P to watch musician Bobcat Bob (fabulous!) and hang out with friends.

When I wrote a check to pay for my drink at C&P, the date stared back at me. May 25...the day my world changed.

But not yesterday. Yesterday was blissfully normal. I hope for MANY more healthy, normal May 25ths. Happy anniversary to me!

Anniversaries

May 25, 2005 I found a lump in my breast.

May 25, 2006 I achieved Lifetime status at Weight Watchers.

May 25, 2007 I don't expect anything out of the ordinary to happen (and boy am I relieved by that!).

Two years of Cancerville - wow, that blows my mind. Every day I deal with the side effects of the treatment - limited range of motion and/or shoulder pain; joint pain from the Femara; all of the symptoms of a brutally induced menopause (if you don't know, don't ask...let's just say that hot flashes are terrible but not the worst of it). I'm still not done with surgery (no nipples), and I'm still not done with Herceptin or Femara. Amazing. I have to do an MRI follow up in a couple of weeks - routine - and I'll feel sick about it until I get my results, though I'm not particularly concerned except in a very general sense of fear....but this is the new normal.

And yet, every day, I feel pretty good. A day with joint pain is still a day that belongs to me, and I intend to seize every minute, to squeeze everything I can out of each second. Cliche'? Probably, but it is also my truth. I know what it means to be in fear of dying, and I know what it means to feel real, deep, brutal pain, both physically and psychologicly. I also know how grateful I am to be free of agony, to be filled with hope, to be productive, to play with Tessa, to picnic on the beach with Ryan (tonight's plan before my parents bring Tessa home!).

I am grateful for my time. I am grateful, even when I'm resentful, that I can carry a load of laundry up our steep, narrow, 1923 basement staircase. I am overjoyed by sunny days. I still get mad, I still feel petty thoughts, and I'm still human...but I'm filled with gratitude that I am alive.

And as for that second anniversary? Well, I'm fighting a pesky 5 pounds that I'd like to lose, but I know that I WILL lose them, and I am thrilled with the progress I've made in that regard. I am still below my official goal weight, and I know that my BMI is excellent. My size 4 and 6 pants are my gauge - right now the 4s are snug but the 6s are fitting well....and my old size 10 self doesn't see much to complain about in that sentence, even when my new self is irritated by the small upward swing. I know I've improved my health, and I know that I know how to keep the weight off, and how to re-lose those five pounds. I know that I am an "after" photo, and that I know how to stay this way. It feels good to be slim, and I will keep that feeling. Five pounds one way or the other is fine....but I vow to never let it get out of my control again like it was before Weight Watchers. I am as proud of maintaining my low weight as I am of losing it, and the anniversary is one worthy of celebration. Instead of cake, maybe I'll go for a nice long run tomorrow. ;-) (Yes, I still eat cake, just not as much as before. And yes, it's worth it to me to live that way!)

Speaking of running, it still hurts, but I'm staying on Femara, and I'm going to run despite it all. Today at my Herceptin appointment I listened to two ladies talking, and each of them had been early stage and then recurred to stage IV. Maybe I'll do that anyway, as it's not totally in my control, but I will not give up on fighting. I imagine that either of them would take my joint pain, AND my cancer free status, in a heartbeat if they could. I nearly forgot that lesson, but I remembered today. I will add Aleve to the handful of vitamins I take each day, and I will keep taking Femara. Heck, it's only 3.75 more years of it. I can handle that....look how much worse I've handled in the past two years!

Off to more chores, but tomorrow we're having PEPS over and it will be busy, and I couldn't let the anniversaries go by unnoticed. Happy anniversaries to me - I'm so glad that the hideous one and the proud one go hand in hand...there's a not-too-subtle lesson in there for me.

It's sunny in Seattle, and I'm enjoying it. Carpe diem!
Kristina

A blast from the past

Today I was at the Komen offices in Wallingford (Race for the Cure is coming up and I have lots of work to do!) and drove by my old house in Wallingford. I was surprised to see it up for sale, but had to pull up the listing just to see what they said about it:

http://www.windermere.com/index.cfm?fuseaction=Listing.ListingDetail&ListingID=17841454

I'm sad they don't have interior pictures; I always thought that the interior was way cuter than the exterior.

I have many happy memories from that house. It's the only place I ever lived alone - I moved there after Susan & Erik got married, and before Ryan and I got engaged. I loved having my very own space, and I spent lots of lovely evenings soaking in bubbles in the claw-footed bathtub. It's also the home where Mozart was a kitten; it's also the first place that Ryan and I ever lived together. (As soon as we were engaged, he moved in...and that was just as wonderful as living alone, but in a different way!) Our friends Keith & Noel lived in the bottom half (it's a duplex), and we'd all get home from work around the same time and we did lots of spontaneous dinners together - "Hey, I've got some salmon," "Well I could make a big salad," "Okay you get the wine open, and I'll turn on the grill" and hours were spent laughing and talking and hanging out at the picnic table in the back yard.

I don't want to go back - I love my life now - but it is fun to walk down memory lane, and to remember the me that was before marriage, child, mortgage, health issues, etc. It seems very young and carefree in hindsight, and I'm glad I enjoyed it while I was there.

Treatment decisions

I have been taking Femara, an aromatase inhibitor (an anti-estrogen drug; my breast cancer type feeds on estrogen, so I've gone to great lengths to eliminate estrogen from my body) for about 15 months now. At first it was no big deal, without noticeable side effects, and then the side effects really peaked (and it was hard to get out of bed each day, literally) and then they subsided again, and I thought I was in the clear.

But those nasty side effects are back. My bones and joints just ache and ache, and nothing seems to relieve the pain. Last time I visited Dr. Rinn (oncologist), she said that I could take a one month break from Femara to see if that helped. I refused, because this is supposed to be one of my wonder-drugs, and of course I worry about the "what if's" of going off the drug - after all, I don't take it for the joy of it, I take it to fight cancer!

I have to decide whether to take a break, to switch drugs (there are two other AIs on the market to choose from, but they are not side-effect free, either), or to keep going.

I suspect I'll keep going, but the quality of life issues are driving me nuts. Can I deal with 3.5+ more years of this?

Right now I'm not running or exercising much because of the side effects, and it's making me crazy. Marathon '07 is important to me, but how am I going to do it if WALKING hurts?!

I'll figure it out, and I'll be okay. But it's stuff like this that keeps cancer in the forefront of my brain. It's hard not to think about it when my entire body reminds me of it every minute. This cancer journey isn't over.