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.
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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.

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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.
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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.