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.

You are kidding me, right?

Today a bank robber was hanging out in my neighborhood.

Yes, you read that properly. My street was COVERED with police officers, a K9 unit, guys in bulletproof vests, police cars, a fire truck, and three (three!) helicopters circled my house for a couple of hours. The police officers told us that the suspect was "pinned in a house" and that we were safe; no need to take the kids elsewhere.

Unfortunately, here's the update:
http://www.king5.com/topstories/stories/NW_051507WABwestseattlerobberyTP.710940ae.html or
http://seattletimes.nwsource.com/html/localnews/2003707888_webbank15m.html

Nobody knows where this guy is now.

Nice.

For the record, this (the house they thought he was hiding in) is about 9 houses away from our house, if I counted properly. My doors are locked tonight, though I suspect that this guy is LONG gone (I think that this area is the last he'd want to hang out in, based on the number of cops that were here).

Sigh. Here's hoping that Seattle's finest catch their man tonight.

Kristina

Yard Sale Results; Happy Mother's Day! (part 2)

Saturday's yard sale was a success! We raised something like $2400, give or take a little. HURRAH! We will distribute the money to the 3-Day funds a little closer to the event when we know everyone's standings, as most of our walkers are still in mad-fundraising mode (hurrah). Our team has raised $42,000+ in donations, in addition to the yard sale funds, and I am so immensely proud of that fact.

The yard sale was busy, busy, busy, with tons of shoppers and tons of helpers. We filled up three yards (thank you to our neighbors!) with goods, and the team really came together to make the sale a success. Jenny & Heather made signs, Carol brought morning pastries for the team, Bryona rented a U-Haul to bring large items to the sale, and Jenny, Dawn, Anna & Kevin and families (husbands and kids, too!) came over on Sunday - Mother's Day! - to haul away huge loads to the dump and to be donated. Thank you to everyone for going above and beyond!

I have no idea how many families donated goods to the sale; I believe at least 100. Thank you to each - we couldn't have done it without you.

I can hardly believe that another Mother's Day has come and gone. My first Mother's Day was in 2002, but I didn't yet know that I was pregnant (though I was very hopeful and thought about it all day!). Since then, five Mother's Days have passed, and all I can say is that with each passing year, I'm more and more grateful to be a mother, and more and more delighted by my family. I have been blessed.

I hope that your Mother's Day was wonderful. Loving thoughts to my mother, who raised me with love and affection and the belief that I could do anything I set my mind to, and who has always been there for me, in good times and in times of tears. I love you, Mom! Additional loving thoughts to my mother-in-law, who raised a son who is kind, funny, and smart, and who treats her daughter-in-laws with love and kindness. I know how lucky I am to have these women in my life!

I hope that one day I get to see Tessa become a mom. She will choose what is right for her, and I certainly don't want to rush things - I enjoyed "waiting" to become a mom - but I hope that one day that is in our future. And, of course, I hope to be alive to witness it, should it come to pass.

Happy (belated) Mother's Day!
xoxo
Kristina

Yard sale madness!

This Saturday is the giant yard sale. My house is filling up with donated items, and teams of people are swarming to get ready to sort, label, and sell those items. It's a bit overwhelming! Last year, we raised $2100, and this year is going to raise even more.

(Speaking of raising money...29 people on our team have raised $41,000+ so far. IMPRESSIVE!)

Last year at this time, I could barely sit through the yard sale, as I was so uncomfortable from my lat flap surgery (only a week out, barely home from the hospital). This year will be an improvement, needless to say, and I'm delighted to take on a leadership roll.

Despite that, this is exhausting. I'm so excited for the sale...and I'll be so glad when it's over. :-)

Love,
Kristina

PS Want to check it out? Come by my house from 9-3 on Saturday!

Cancer moments

I had a cancer moment yesterday.

At co-op, I was, at the childrens' request, sitting with a group of kids in the reading corner, reading "I'll Love You Forever" to them. I've read this book a hundred times, and it's very sweet: about a mother singing her "I'll love you forever" song to her infant, then toddler, then school-age, then teenager, then adult child, and then at the end, the old mother is frail and her son carries her like a child and cares for her, and sings to his mother "I'll love you forever." Very sweet.

Except for cancer moments.

I made it to the page where the child is nine years old, and it swept me like a huge wave. Will I know Tessa when she's nine? I will love her to eternity, but when she's nine will I have the chance to tell her in person? Tessa was across the room, intently building a tower, and her beauty struck me like never before. Would I know her at nine?

I had to stop. I hurried to the bathroom, shoving the book at another parent to finish with the kids (who appeared oblivious to all of this), and sobbed.

When I got it together, I wiped my eyes, came out, and continued with my day.

I tried to explain it to the parent who had taken over for me, and she said, "I know what you mean, that book gets me every time," but I know she didn't understand (though she was very nice about it). Sure, it's amazingly touching, but that wasn't it at all. Most of us assume that we will grow old to watch our children grow, and that if we are lucky our children will love and care for us in our old age. I no longer have the luxury of that assumption. This book reminded me that I am different, and that my guarantee is less than someone else's.

A cancer moment. I can not explain the level of grief I feel in these moments.

I used to have cancer moments every day. When I was first diagnosed, I felt that cancer WAS my life, and that there would never be another thought in my head that wasn't tainted by cancer. Nearly two years out, and that's not the case at all....my days are, mostly, rich and fulfilling, and though cancer is always there I've been able to channel it into a lot of positive things. If I must think about cancer nonstop (and this is the case), then I've decided to think about ENDING it, and hence my work with the 3-Day, Race for the Cure, and Genentech. I'm trying to own it, rather than it owning me.

Yesterday, once again, cancer reminded me that I'm not in charge. I can do the most aggressive treatment (I've yet to meet anyone who has done as much as I have for early-stage breast cancer), I can take on challenging volunteer work, I can wear a bikini and run on the beach with my new breasts, I can train for a marathon, I can hug my daughter, hold my husband's hand, walk my dog, clean my house, chat with friends.....but cancer is always there, threatening me, and promising to take it all away. I have a great attitude, and 99% of the time I believe that I am cancer free and will live until 2069 despite the cancer. But that 1% of the time....wow, that hurts.

Grandma Tess's Memorial

Today was Grandma Tess's memorial service. I am so sad that I was not able to attend because of my prior commitment to Genentech (which went well, by the way), because I would have loved to see everyone in the Surface clan and to pay my respects to Grandma Tess.

Every time I call Tessa, I believe that a bit of Grandma Tess lives on. I am so grateful that they got to meet, and that Grandma Tess was able to understand that we had tried to honor her by naming her great-granddaughter after her. Of course, I never knew Tess well, but everything I have heard tells me that I wish my daughter to have many of her attributes: spunk, energy, wit, humor, intelligence, perseverence.

Special hugs for Mom Surface. I can't imagine that it is ever easy to bury a parent, and I doubt that this was an exception to that rule. I send you my special love today.

Love,

Kristina

a baby and a plea

Today I received the happy, happy news that Warrior Woman team member Kristin's baby, a beautiful daughter, was born. Little Eleanor is healthy and happy...and she's a miracle baby. Kristin was diagnosed with breast cancer when she was 6 weeks pregnant, had a mastectomy when she was 8 weeks pregnant, and did chemo through her second trimester. Eleanor became a survivor of all of this before she was even born, and I am certain that she is a child meant to do amazing things in this world. Welcome, Eleanor, and congrats to Kristin, Craig, Eleanor and big sister Luci!

But I'm mad. I'm angry that a pregnant mother must endure such atrocities. I'm angry that children must watch their mothers suffer. I'm angry about the damage that has been done to my body. I'm angry that I keep receiving phone calls from frantic friends, in shock and pain over a new diagnosis, and I am unable to take their pain away. I am angry that there is no easy solution to these problems.

I need your help. I am determined to find an end to breast cancer. As Kristin said, "once is enough." I fight for my own life, but also for the lives of all women (and a few men, too). I am fighting with all I'm worth, continuing aggressive treatment, but also fighting on a public level: I am up to my eyeballs with work for the Komen Foundation (look for me at Race for the Cure June 16, leading the I AM THE CURE program!) and Genentech (my first speaking engagement is in Seattle tomorrow morning at 9:30 at the Silver Cloud on Broadway - all are welcome to attend). But my primary focus is the 3-Day, because funds raised through the 3-Day go primarily to research, and research will lead to the cure.

I am begging for your help. Please give a generous contribution so that we can END this disease for all of us. I am working with my whole being towards this cause, but I can't do it alone. Last year, I raised $6000 and my team raised $32000. This year, I have a LONG way to go to meet that number, though my team is already at $38000 and growing every day.

Will you help? Please? Please do it for me, for Tessa, for Kristin and her daughters, and for all of us. We really, desperately need a cure, and I can't do it alone. I need you!

http://www.the3day.org/seattle07/rykri

Thank you.
Love,
Kristina

Laughter

Random thoughts:
- While swimming with Tessa in the pool in Hawaii, it occurred to me that she might think that it was funny that the Hawaiian word for appetizer is "pupus." I swam up to her, with a twinkle in my eyes, and said, "Hey Tessa! For dinner tonight, would you like some...." and here I started spluttering and giggling and laughing until I couldn't say a word. At last, I understand a bit of preschool potty-humor! I recognize that it's not nearly as funny as I was making it out to be, but I could not stop laughing. Laughter like that feels good. (Tessa was appalled at my idea, and language, just for the record. She was not nearly impressed. Her disgust only made me laugh more. I guess I really am juvenille! )

- My personal pet peeve is when people chew with their mouths open. Given that Tessa is four, you can imagine how often this comes up. Well, Tessa has started calling it my "pea pod" instead of pet peeve and I just think that's the cutest thing. I can't correct her for fear that she'll lose this charming way of putting it.

- Last night, Ryan had the stomach flu (UGH - it was awful, but it has passed, and we are all so glad!) and so Tessa and I went out to Japanese instead of making dinner at home (Ryan had saltines for dinner...I was going to do a garlicky fish dish...can you imagine smelling that with a sour stomach?!). The bathroom at the resturant (with a 4 year old I swear we hit the restroom every 15 minutes - I know every bathroom at every resturant and grocery store and shop) had a fancy Japanese style toilet, which could, at the push of a button, spray one's nether-regions or dry them with warm air, etc. This was too good to miss, so when Tessa was finished, we set the water to "low" and "warm" and hit start. OOPS. Here is a note to the uninitiated: those seats are designed with a bigger bottom in mind...one that covers the entire seat. Given that Tessa's little bum only covered half the seat, the water sprayed up her back, and LITERALLY sprayed a shower over both of us. Fortunately, Tessa has a great sense of humor, and we both got a very good laugh out of it. (West Seattle people, you can check out the fancy commode at Mashiko's.)

Two cases of the giggles in a week....now that's a good week!

Hawaiian Fantasies Come True

My fantasy: running into the waves with Ryan and Tessa, smiles on our faces.

Ryan's fantasy: riding up AND down the volcano, Haleakala (he made it to 6500 feet - that's higher than Camp Muir on Rainier!).

Fantasies fulfilled. BLISS!

Home from Hawaii

Aloha!

The trip was fabulous. The time with family was wonderful, the weather was spectacular, the scenery was delightful and the ocean was fabulous. We all have tan lines from our swimsuits and smiles on our faces!

More to follow, this note just to let you know we're back. Now we're in the mad rush of trying to get caught up with things and get resettled into regular life, but when it slows down I'll update more.

A Message from The Talent

I am home from San Francisco, and I sincerely wish that I had several hours to write a blog entry because there are so many things I'd like to update on the blog. Many, many stories grew from my trip to film an internet commercial for Genentech, and I hope to have a chance to share some of them down the road.

A few updates:
- I had a MUGA last Tuesday, and believe it or not my heart function actually INCREASED from the MUGA two months earlier, despite my concerns. The tech ran the old scan and the new scan twice (she went back to the old films to rework the data), and she was amazed to find the same data each time. I'll take it! My heart is functioning well; no worries, and I continue to take Herceptin.

- I've reduced my thyroid meds and I'm hoping for a bump in energy as a result. I think maybe I feel a bit more rested now....?

- While in San Fran, I swam several gentle lengths of the pool, breast-stroke style. It didn't hurt! This is the best sign of all of my improved range of motion and strength. I also ran 30 minutes on the treadmill, plus warmup and cooldown, and my running break seems to have helped - my back didn't hurt at all. So, I'm back in the running game!

- My 3-Day team stands at 25 people and $25,000. I am immensely proud of this fact. We have only just begun!

- Shep's injury is healing, but not without bumps in the road. He has been to the vet every day - including Sunday - for the past six days because his wound is weeping and, frankly, disgusting. (Sigh.) I am going to have to take him in again tomorrow and we are now considering boarding him at the vet where his bandages can be changed more regularly. This will break his sweet little heart and I hate the idea but something must be done!

And then there's San Fran. Five days away from Tessa is the most I've taken since she was born, and it was a little lonely to be apart from her, but still, freeing and wonderful. I am eternally grateful to my mom & dad for watching her on Thursday and Friday, for Ryan for being his usual great dad self on the weekend without me, and to Jenny for watching Tessa extra today while Ryan worked and before I got home.

Highlights of San Fran:
- Nancy. Nancy is another Herceptin Patient Ambassador like myself, and she and I got a chance to spend a good deal of time together while we were in the city. Nancy is an amazingly articulate, beautiful, vibrant, intelligent woman with a twinkle in her eye. Like me, she is a breast cancer survivor. She has children my age, but this generational gap meant nothing - I wanted to soak up Nancy's wisdom and share in her friendship and humor. We ate (VERY well - we had several course dinners at wonderful resturants each night), laughed, and talked together, and the time just flew by. (The other ambassador, Ginny, is a lovely woman as well, but we didn't have as much time to get to know each other as we were on different filming schedules most of the time and she flew in later and left earlier.)

- Learning about the film industry. Though I was referred to - often to my face, but more often as if I wasn't even in the room - as "the talent" (as in "we need to get the talent over there" or "we'll need to round up the talent at 4:30" or "what do we want the talent to do next" or "get the talent into makeup and wardrobe as fast as possible") I was certainly not talented in this arena - it was purely amateur hour. I needed to learn to look away from the camera, to walk unnaturally close to things, to run slowly as if I was flying (not sure I ever got that one figured out), to look dreamy, etc. I was not the diva on the set, despite my starring role: the diva is the camera itself. The camera demands "More light!", "Too close!", "Faster!" in quick succession: the camera has a flurry of subjects bowing to it and appeasing it by catering to its every whim. I sometimes found it comical, but it was always interesting to me.

- I spent two hours in hair and makeup one day - plus touchups. It was exactly like what Tessa does when she plays dress-up, only Nick, the stylist, was paid to play. (I jest; what he did was hard work, and his work was excellent. To me, though, it was like playing!) Nick has done some famous work and showed me, using the hotel magazines as his example, some pictures of his work/clients - his name printed in the small type alongside their modeled faces on the glossy pages. He plucked my eyebrows - even though I had them waxed last week - and I'm here to tell you that I looked fabulous with his paint on my face. He is hysterical, and made me laugh more times than I could count.

- The highlight of the filming, for me, was also the most frustrating part. In addition to reading from a script (teleprompter), doing still photos, and scenes with no speaking parts (walking through a garden, drinking a coffee, etc.), I was required to do an "athletic" sequence. I had mentioned that I was into running and that I planned to run a marathon, and so they wanted to film me running. At the end of a twelve hour day, doing all kinds of strange things, running in slow motion, running quickly, leaping over 4 foot long mud-puddles, running into the sun, running away from the sun, running on the path, running through the trees, running fast, running slow, it was decided that I should run along the edge of the road and that the camera crew would go in the van alongside me to film me. We practiced a couple of times at a slow speed (a gentle jog) and I could see that the cameraman was getting frustrated with the shoot; it just wasn't going how he'd envisioned it. He decided we needed to speed it up. Twelve hours into filming I was a bit tired, but up for anything. We tried it a couple more times, sprinting through a park, and it wasn't quite right. One more time, one more time, one more time.... Well, on the last time, he wanted me to go hard. I put everything I could into it, I looked straight ahead, and I went as fast as I could go. It wasn't, apparently, fast enough, and the cameraman was yelling, "FASTER! GO FASTER!" in a voice that sounded more annoyed than encouraging. Since I was on film I couldn't yell back, but I was thinking ,"Hey, I AM going faster....gimme a break!" At that point, he growled out, "DIG DEEP!" and something in me snapped. It's a good thing that nobody could see the thought bubble above my head at that moment (rated R for profanity) but I dug as deep as I could go and, what-do-you-know, I finished with a burst of speed and a fierce (a combination of determination, frustration, resentment...) look on my face. The cameraman practically applauded, yelling, "YES! That's it! That's FIERCE!" Though still annoyed at him for asking me to go way above and beyond my abilities (I actually played out a scene in my head where I would rip off my shirt to show him all of my scars and yell, "Do you see this body? Do you see the hell I've been through? GIVE ME A BREAK!!!" - thankfully, good manners and common sense prevented me from doing such things, but it was quite the fantasy I had going!), I am actually grateful. He reminded me, unintentionally and for the camera's benefit, not my own, that when I think that my reserves are depleted, there are more. No matter how tough it gets, I can get a little tougher. "Dig deep" has all new meaning for me. I'm proud of that moment, and I hope it looks as spectacular on film as he promised me it would.

- The commercial will probably air in June on the Genentech website. Trust me, when it's available, I'll let you know! I've only seen a moment of myself running, and I'm not sure how it's all going to go together, or how long the finished result will be. I'm told that the stills will be made available to me online, and I'll share those too if they're not too embarassing.

And then...saving the best for last....Carolyn. Carolyn and I have been friends since I was 16; we met at Woodinville High School. I adore Carolyn; she is truly one of the finest people I have ever met, and I know how lucky I am to have her in my life. Time and distance mean nothing to us, and when we meet, everything falls away and it's like we've never been apart. Our friendship is one of my life's greatest gifts, and I'm so fortunate that she has stuck with me through all of these years.

Carolyn, who lives in the Bay area, came to meet me on Sunday and share in my free night at the Ritz. (I wish that I could report that the Ritz lost my luggage again this trip, but, sadly, that is not the case, and I do not forsee getting another free night there as a result.) We went to a drag show for brunch at the Starlight Lounge, and we went to America's longest running play, called Beach Blanket Babylon, in the evening. And the rest of the time? We talked and talkedandtalkedandtalkedandtalked. And then talked some more. We actually talked until 2am this morning - something I haven't done in AGES. (I can still hear my mom's voice when we were in high school, "Look, girls, it's getting late and you're keeping us up. Turn out the light and go to sleep! You can talk in the morning!")

We also ate. Oh my! We had the amazing fortune of having our room upgraded - we got to stay on the Club level at the Ritz. Now, the Ritz itself is an amazing hotel....lovely. I don't get to stay in 5 star hotels, so any room would have been great....but we got upgraded substantially. Our room was particularly lovely, with incredible views out to the water. Our floor had a special lobby with our own receptionists and a salon with all the free food and drink we could imagine. When we arrived, it was high tea; for dinner we ate their seafood appetizer buffet; then there was a dessert buffet. Wine flowed like water. In the morning, there was a breakfast buffet; before we left there was a lunch buffet. CRAZY! Every bit was delicious, and every bit was free with our room. We didn't need to go out to eat - we lived like queens (let's say princesses instead...sounds less dour or less drag-y!).

This morning we worked out -a fter all that food it felt REALLY good to do so. I ran on the treadmill, swam a bit, and we soaked in the hot tub.

I'm too tired to write more, and there is much more to say, anecdotes to tell, ruminations to share....but it is past time for sleeping. I hope more will follow in the days to come.

Kristina

Zoooom

Quick post as Tessa does some art and Ryan runs an errand...

Shep update:

He is going to be okay, but Shep was hit by a car on Saturday. It makes my stomach lurch just thinking about it, as Tessa and I witnessed the whole thing. Shep escaped past me when I opened the gate from the back to the front yard, and chased a neighbor's dog (his buddy) to play with him. Shep was so fast that that lady driving her SUV down the street didn't have a chance to stop, and she ran over his back foot. There was a significant amount of blood, and I could see all of the bones in Shep's foot....it really makes me tremble when I think of it. Our neighbor held Shep while Tessa and I raced back to the house for the car keys, jumped in the car (parked in the back alley garage) and zoomed to the front of the house to get him. Shep cried piteously, and I don't blame him, as the injury looked painful beyond belief. The neighbor helped us to load him up in the car, and we went the vet, which was mercifully open and only two blocks away. The vet met us with a team at the animal hospital, and whisked Shep away on a stretcher to assess and help. Only when Tessa and I were seated in the waiting room, Tessa hugging me and me returning that hug, did I break down and cry. What an awful thing to witness; what pain for Shep; what a traumatic experience for Shep, Tessa (she was so brave, dear girl) and I.

The long and the short is that Shep will be okay. His foot was "de-gloved" (that means what it sounds like - awful) and he broke only one toe - amazing! He is in a splint/cast and very subdued, but loving and sweet. He will heal. He had surgery to fix what was fixable, and only time will tell how it will heal and if the skin will close, or if it will be an open wound. Tomorrow we take him back for his check up.

Shep is a royal pain in the you-know-what, and I know I complain about him pulling on the leash, or shedding, or chasing other dogs to play, but man I love that dog. He is an absolutely wonderful companion, and he's part of our family. I am so grateful that things weren't worse.

Hawaii:

We leave next week. HURRAH! Dear Jenny is going to watch Shep (we'll pay her what we would have paid the kennel) so that Shep isn't with a bunch of dogs at the kennel, and he will be loved and cared for, so we are grateful. And I can't wait to plunk my derriere on a beach!

San Fran:

I leave on Thursday (returning Monday) and I'm looking forward to it - it's fun for me in my role as a stay-at-home-mom to play the role of a professional, and it's also fun to anticipate downtime on the airplane and in the hotel by myself! Best of all, at the end of the business part, I get to spend a day and a half with Carolyn. Lucky me!

Easter:
Was wonderful. We had our West Seattle friends over for brunch, and the kids went wild for the egg hunt. In the afternoon/evening, my parents, Mike, Krystal and their boys Caleb and Joshua came over for dinner (mom brought leg of lamb, and we made loads of veggies to go with it) and the kids played and the adults chatted. I felt fortunate to have such a wonderful day.

3-Day:
AMAZING. There are 23 on our team officially, and we've collectively raised almost $22,000. I can hardly believe how wonderful these women are, and how fortunate I am to have them in my life. We have a guy on the team now, too - hurrah for Kevin for being man enough to wear pink and hang with the ladies!

Race for the Cure/I am the Cure:
I have work to do, and I look forward to moving forward with it. The program is awesome and I'm glad to work with it.

Running:
My body is not liking running right now; my sciatic pain (this is what inspired the bone scan last December...horribly painful at times but not life threatening as it turns out!) is returning and my body is angry when I run. I'm trying to do some non-impact stuff right now instead. I STILL plan on that marathon; I just need to work up to it slower than I had been, so I'm scaling back.

Overall health:
Pretty good, all things considered. I am regaining range of motion, I'm adjusting to the bigger-than-I'd-like-boobs, and my tumor markers are consistantly low. My thyroid is off and so we're working on getting that back together so that I won't be so **** tired - I'm really feeling fatigued right now for reasons I can't otherwise explain. I'm having Femara issues, too....joint pain, and the fatigue may be part of that. BUT it's okay: I am generally healthy and I can live with the side effects as long as they don't kill me! I also have a MUGA tomorrow to see if the occassional lightheadedness that I've been feeling, along with some other random side effects, are heart related (Herceptin) or maybe something else. I suspect that the MUGA will be fine...fingers crossed! I continue to take Herceptin.

In the Easter picture with some girlfriends I can't believe how 5 extra pounds shows on me!!!! I'm working on losing it. I hit "Lifetime" for Weight Watchers on May 25 and certainly by my 1 year anniversary of hitting lifetime I plan to have lost that. Harumph! I'm supposed to be in a bikini in less than two weeks....!

There is more to post but that is all I have energy for tonight. Love to all!
Kristina