Monday, June 11, 2007

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

Thursday, June 07, 2007

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!

Wednesday, June 06, 2007

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!

Tuesday, May 29, 2007

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!

Monday, May 28, 2007

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

Saturday, May 26, 2007

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!

Thursday, May 24, 2007

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

Monday, May 21, 2007

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.

Tuesday, May 15, 2007

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

Monday, May 14, 2007

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

Thursday, May 10, 2007

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!

Wednesday, May 09, 2007

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.

Saturday, May 05, 2007

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

Friday, May 04, 2007

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!

Wednesday, May 02, 2007

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!

Monday, April 30, 2007

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.

Monday, April 16, 2007

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

Monday, April 09, 2007

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

Tuesday, March 27, 2007

Some pictures






Time has wings

The days zoom by faster than I ever could imagine....where on earth does all the time go? Right now my house is a mess and I'm behind on laundry and I didn't even cook dinner tonight, and yet I was busy every second of the day. Yikes!

(The washing machine is running now; Tessa's beloved "Crockie" the stuffed crocodile from Orlando suffered a fall into a puddle and that got me moving. And yes, we know that if Ryan got it in Orlando, it must be a 'gator, but Tessa loves crocs right now, so a croc it is.)

And what am I doing with the 24 hours that I am allotted in a day, the same as everyone else? Well, lots of things:

- Working out! I am determined to be beach ready by Hawaii, and now that I'm not in surgery mode, I'm also determined to take good care of my health. I heard another survivor refer to exercise as her "treatment after treatment" and that really struck a chord with me. Regular exercise has been shown to reduce recurrence by up to 50%, which is FAR more effective than chemo. I never, ever would have skipped a chemo because I needed to do laundry or sweep, so I'm keeping that perspective now. Of course, chemo lasted months, and exercise lasts a lifetime, but I'm trying to keep a good attitude about it. Last week I worked out 5 times, running a total of 13 miles, and tihs week I plan to do it again (I worked out yesterday and today with plans to do it again tomorrow and Thursday). I'm able to run 3 miles in about 29 minutes, which isn't exactly a land-speed record, but when I consider how much my body has been abused lately (surgery is not kind) I'm pretty proud of it. The marathon - October - is calling and my work is set out for me.

- Physical therapy. I'm trying for twice a week right now, to make sure that I regain lost mobility. I've made huge advances since my surgery, but I'm nowhere near "normal" and I want to be better than average or normal.

- Team Warrior Women. As a team captain, I'm taking my job pretty seriously, and I have been kept busy responding to emails and communicating information to the team. I can't take much credit for it, but I am DELIGHTED to report that we have 20 official members - double last year's size! - and so far my team members have raised over $16,000. WOW! These ladies are incredible. This makes the hour or so per day that I've spent organizing things seem very, very worthwhile. We have a half a dozen survivors on the team already, and I'm inspired by them more than I can say.

- Genentech. I'm preparing for two events right now: another trip to San Fran in mid-April to film a video for the web, and a speaking engagement in Seattle on May 5.

- Komen for the Cure. I'm back into doing volunteer work, and getting ready to roll out the I am the Cure program at this year's Race for the Cure. It's exciting - but it's about to take up lots of my time.

- Co-op & swimming lessons. Tessa and I spend one day a week at co-op with her buddies Zoe and Jessie; the three girls also take swimming lessons once a week on "my" day. It's a blast to be with them, and they're good friends who play well together, but it's a very busy day. I am also co-op chair...a position I never should have taken on because I'm too busy.

- Back on Weight Watchers. A few pounds crept back on when I wasn't paying attention, and they must leave. Immediately! I'm officially doing the program again, back to writing down every morsel, measuring and weighing. It's working, as I've lost a couple pounds already, but more work is to be done so that my smallest pants fit again. (I haven't gained a full size, but things that fit a few months ago fit uncomfortably now, and that's the best way to judge how things are going!) I plan to go to a meeting on Thursday this week and next, and to prove to myself that I can get this back under control in just a few weeks. The thing about WW that's both good and bad is that it's time consuming; instead of just grabbing a scone at a coffee shop when I'm hungry, I need to plan ahead, prepare more food, plan menus carefully. I should be doing all of these things anyway,so I don't mind, but it is taking up some of my time. Ryan is joining me on the program, and I'm thrilled to have his company and to give him support.

- Playing with Tessa. She's so much fun these days (for the most part; today was a bit of an exception but I'm going to forget that asap!): we've been going swimming together - she can actually swim on her own about 10 feet, and can even take a breath sometimes; Ryan's taken her bike riding (has to be a sunny day to enjoy that); we've been walking the dog together; she's writing lots of letters and learning their sounds; we've been doing art projects almost daily (I set them up, she does them, only occassionally requesting my help). We have playdates, we sing songs, we read stories, she helps me to cook sometimes, and I'm amazed at how she grows and changes each day.

- Trying out a church. Ryan, Tessa and I went to the West Seattle Unitarian Universalist service last Sunday, and really enjoyed it. We're not committed to it at this point, but we will go back and keep trying it on for size. http://www.wsuu.org/ I like their world view, lack of dogma, and open-mindedness. I realize it's not for everyone, but then, not everyone's church/view is for me, either. :-)

Mixed in with all of this is the usual: trips to Target for hand soap and bandaids, last minute treks to the grocery store, getting gas for the car, sewing on a lost button, cleaning up dog hair (how does one dog have so much hair?!), walking Shep, going to the park, grabbing a latte, visits to the vet, my usual doctor's visits (SO much less than before, but still more than I wish), trying to write in my journal on occassion, occassional dates with Ryan, occassional girls' nights, paying bills, figuring out the taxes....there are many, many things to fill each day.

This weekend was almost perfect. On Saturday, the Landahl's came over for breakfast at our house, and we all feasted and the kids got to play together. When they left, we went to the YMCA, and Tessa and Ryan swam (his first time seeing her go - he could hardly believe it!) and I ran on the treadmill before joining them; we had a quiet evening at home, the three of us. On Sunday, we had a lovely day - the best in a long while. The three of us got up, went to the coffee shop (C&P Coffee Company) together, then went to WSUU. There was a lovely service about right livelihood, and then afterwards we went to lunch with the Hisatomi's. We came home, and did some chores, and then Ryan & Tessa went for a bike ride while I prepared a Sunday meal (lemon thyme roasted chicken with baby potatoes and asparagus - a new recipe that I would make again) and then the Starkey-Burdett's came over to join us. It was a wonderful mix of work and play.

And in this way, the days pass. I'll take it!

Love,
Kristina

PS Ryan's okay, but he took a spill on his bike. He has a terrible piece of road-rash on his thigh - it hurts me to look at it! He is working from home right now as it's really almost impossible for him to sit while it starts to heal, so we are incredibly grateful that his company allows him to work from home. He's got a system figured out for lying on the couch with his laptop on the coffee table. It's a surface wound, and it will heal, but he could use your good thoughts that it will heal quickly! He hopes to go for a bike ride this weekend again. :-)

Monday, March 19, 2007

Wrong size

(Note: Today's rant is not about YOUR breasts, it's about MINE. I don't have any problem with any breast sizes. Big, small, I don't care: it's being healthy that matters. Please don't tell me that you wouldn't complain if somebody made your breasts bigger. This is not about your breasts, it's about mine. This is about my dealing with my body, but isn't in any way a judgement on anybody else's body.)

Today it hit me - not all at once, as this has been building over time - that I am the wrong breast size. I find myself tearful and angry as a result.

Many women have had this experience, I'm sure, but my difference is that they didn't have 7 surgeries to get there and then decide that it was wrong.

I asked for a B/C (full B or small C) cup, and I find myself a full D. These boobs are alien to me - they feel TOO voluptuous, they rub against my arms, and they're heavy. When I roll over in bed at night, they're in the way. My shirts all pull because I wear a size small (fits me in the shoulders and the lower torso) and they're now tight across the chest. If I get a size medium shirt, then the shoulders droop.

I have a smaller than average frame (something I didn't realize about myself until I lost the weight - I guess Tessa comes by her slim body naturally!) and the smaller-than-average-frame with the bigger-than-average-boobs is just wrong. It doesn't fit the rest of me. Maybe I'd feel differently if I'd been born with it, but since they're fake it seems really, really wrong. They're much bigger than my original boobs. It's almost impossible to find bras - my size is unusual. The boobs are so wide that they go under my armpits...they don't fit on my chest.

And I'm peeved about it. All this, only to end up with a D??? I want to be an athlete; I want to run marathons! Sure, some women do it with a D, but that's because it's what they got naturally and pretty much all runners complain about big boobs. I didn't go to all this work to get something I don't want!!!

I called the surgeon today, and she said that there is probably still swelling. We'll see - I don't see how it could be swollen but she said they should shrink down. In three months, if they're still too big, I can have surgery #8 to have them reduced.

The thought of another surgery has me weeping. I don't want to do it! ENOUGH! I am tired of being sliced open, I'm tired of needles, and I'm tired of recovery.

But I don't want to be a 32D, either. :-(

It is official: I will not be done with breast surgery by my two year diagnosis anniversary. I thought that two years would be enough....it doesn't seem fair. But nobody said this would be fair.

Wrong size

(Note: Today's rant is not about YOUR breasts, it's about MINE. I don't have any problem with any breast sizes. Big, small, I don't care: it's being healthy that matters. Please don't tell me that you wouldn't complain if somebody made your breasts bigger. This is not about your breasts, it's about mine. This is about my dealing with my body, but isn't in any way a judgement on anybody else's body.)

Today it hit me - not all at once, as this has been building over time - that I am the wrong breast size. I find myself tearful and angry as a result.

Many women have had this experience, I'm sure, but my difference is that they didn't have 7 surgeries to get there and then decide that it was wrong.

I asked for a B/C (full B or small C) cup, and I find myself a full D. These boobs are alien to me - they feel TOO voluptuous, they rub against my arms, and they're heavy. When I roll over in bed at night, they're in the way. My shirts all pull because I wear a size small (fits me in the shoulders and the lower torso) and they're now tight across the chest. If I get a size medium shirt, then the shoulders droop.

And I'm peeved about it. All this, only to end up with a D??? I want to be an athlete; I want to run marathons! Sure, some women do it with a D, but that's because it's what they got naturally and pretty much all runners complain about big boobs. I didn't go to all this work to get something I don't want!!!

I called the surgeon today, and she said that there is probably still swelling. We'll see - I don't see how it could be swollen but she said they should shrink down. In three months, if they're still too big, I can have surgery #8 to have them reduced.

The thought of another surgery has me weeping. I don't want to do it! ENOUGH! I am tired of being sliced open, I'm tired of needles, and I'm tired of recovery.

But I don't want to be a 32D, either. :-(

It is official: I will not be done with breast surgery by my two year diagnosis anniversary. I thought that two years would be enough....it doesn't seem fair. But nobody said this would be fair.

Friday, March 16, 2007

15 and $9500

Today I logged in to the Warrior Women website for the 3-Day
http://www.the3day.org/seattle07/rykri
and my smile couldn't be bigger. Our team is 15 women strong and growing...and my amazing friends have raised $9500+ so far. Every day I see the numbers climb a little bit, and I think:

"When our daughters are women, breast cancer will be a thing of the past. They will not live in fear: they will live proud of the work of their mothers before them. Our daughters will keep their breasts, and their lives, because of the work we do."

Our daughters, daughter-in-laws, nieces, friends, mothers, sisters, aunts, cousins....ourselves.

Of course, there is a LOT of work to be done between now and then, but I believe we can do it. My fourteen friends - some new, some old - are working hard. Our work will make a difference!

Tuesday, March 13, 2007

"Shoulds" that I can live with

Maybe this is why my 30s are better than my 20s, despite the obvious problems...

(Written by someone else...one of those emails distributed all over the place)

1. A WOMAN SHOULD HAVE ... enough money within her control to move out and rent a place of her own even if she never wants to or needs to...

2. A WOMAN SHOULD HAVE ... something perfect to wear if the employer or date of her dreams wants to see her in an hour.

3. A WOMAN SHOULD HAVE ... a youth she's content to leave behind....

4. A WOMAN SHOULD HAVE .... a past juicy enough that she's looking forward to retelling it in her old age....

5. A WOMAN SHOULD HAVE ..... a set of screwdrivers, a cordless drill, and a black lace bra...

6. A WOMAN SHOULD HAVE .... one friend who always makes her laugh... and one who lets her cry...

7. A WOMAN SHOULD HAVE ... a good piece of furniture not previously owned by anyone else in her family...

8. A WOMAN SHOULD HAVE .... eight matching plates, wine glasses with stems, and a recipe for a meal that will make her guests feel honored...

9. A WOMAN SHOULD HAVE .... a feeling of control over her destiny...

10. EVERY WOMAN SHOULD KNOW... how to fall in love without losing herself..

11. EVERY WOMAN SHOULD KNOW... HOW TO QUIT A JOB, BREAK UP WITH A LOVER, AND CONFRONT A FRIEND WITHOUT RUINING THE FRIENDSHIP...

12. EVERY WOMAN SHOULD KNOW... when to try harder... and WHEN TO WALK AWAY...

13. EVERY WOMAN SHOULD KNOW... that she can't change the length of her calves, the width of her hips, or the nature of her parents.

14. EVERY WOMAN SHOULD KNOW... that her childhood may not have been perfect...but its over...

15. EVERY WOMAN SHOULD KNOW... what she would and wouldn't do for love or more... 16. EVERY WOMAN SHOULD KNOW... how to live alone... even if she doesn't like it...

17. EVERY WOMAN SHOULD KNOW... whom she can trust, whom she can't, and why she shouldn't take it personally..

18. EVERY WOMAN SHOULD KNOW... where to go... be it to her best friend's kitchen table... or a charming inn in the woods... when her soul needs soothing...

19. EVERY WOMAN SHOULD KNOW... what she can and can't accomplish in a day... a month...and a year...

Being healthy

Now that I'm feeling relatively good, I'm ready to work at really being healthy again. My pants are telling me that the "I deserve a scone because I'm about to have surgery/having surgery/just had surgery" attitude did not pay off, and I'm ready to work on being well again.

Time for the gym; time for Pilates (argh!); time for outdoor runs. And time, I'm afraid, to kiss the scones goodbye. It's worth it, though: Hawaii (and my bikini!) calls to me, and I am determined to enjoy my time on the beach feeling unselfconscious, kissed by the sun, admired by my husband. :-) (To Ryan's credit, he is always super kind about my weight, and always tells me that I'm beautiful....but I know the difference so I want to make sure that I EARN his admiration, not just get it because he has to. :-) )

Monday, March 12, 2007

I love survivor stories!

From the Pacific Northwest Magazine this weekend - stories of people who have survived despite the odds. If they can do it, maybe I can do it too. I'm counting on it!
http://seattletimes.nwsource.com/html/pacificnw03112007/2003608432_pacificpsurvivor11.html

Humbly asking for your help again

Dear friends and family,

I have asked for your help many times in the past two years, and you have given it to me: I lost count a long time ago about how many meals were made, how many hours Tessa was cared for, how many cards were written, how many gifts of friendship and kindness were offered and received. Every gift is marked in my heart, though, and I am more grateful than I can say. I couldn't have made it without you, and I know in my deepest heart that I have you to be thankful toward for getting me through the worst times of my life.

I am asking for your help again: please support me in The Breast Cancer 3-Day to fund Susan G. Komen for the Cure's research to end breast cancer.
http://www.the3day.org/seattle07/rykri

I am grateful to be NED (no evidence of disease); all of my scans show that the cancer is being kept at bay, and that I am healthy. Almost two years since my diagnosis, I am nearly rebuilt...Humpty Dumpty is being put back together again. It's hard to believe how much has happened to me since June 2005: two mastectomies, a node dissection, port placement, 16 rounds of chemotherapy, 33 rounds of radiation, hysterectomy/oopharectomy, and multiple reconstruction surgeries, in addition to the continuation of Femara and Herceptin (drugs designed to keep the cancer away). I lost count a long time ago about how many needles, how many scans, or how many blood tests. I keep working hard to be well, watching my diet and exercise, taking my meds, undergoing reconstruction, going to physical therapy. Cancer is hard work, but I don't mind the work as long as I stay healthy.

I feel that now, when I am healthy, my real work is ahead of me. I am asking for your support to fund the cure. My real work is to end breast cancer for everyone, now that my personal battles are (hopefully) behind me.

This year, again, I am participating in The Breast Cancer 3-Day. I will raise pledges and commit to walking 60 miles over the course of three days (September 7-9, 2007) in an effort to end breast cancer. Last year, my team of ten raised $32,000, and this year we are determined to raise even more money to fund vital research to end breast cancer. I am incredibly grateful to all of our donors from last year: we are making a difference, and I can't do it without you. I humbly ask for your support again, so that we can get steps closer to the cure this year.

I hate breast cancer. One in eight women will be diagnosed in her lifetime, and I am sick to death of it. I am surrounded by breast cancer, not just in my support groups but elsewhere. My neighbor, Mira, was diagnosed with stage IV a year after me. Another neighbor's mom - herself a very young woman - was diagnosed last year. Just last week, one of Ryan's colleagues was diagnosed. I know that many of the people on this email have been touched by breast cancer by people other than myself - sister in laws, moms, grandmas, and friends. Nobody is immune from this hateful disease, and we must stop it!I am dedicating my life's work to ending breast cancer, and I need your help. Together, we can end breast cancer...I am sure of it!I am committed to raising a mimimum of $2200.00, and I am leading a team of women who are, together, committed to raising much more: we hope to raise $60,000.00 this year. Please support me by going to the 3-Day website and making your pledge:
http://www.the3day.org/seattle07/rykri

Or, consider joining me in the walk! Join my team, Warrior Women:
http://www.the3day.org/seattle07/warriorwomen

I walk so that my beautiful daughter Tessa may live in a world without breast cancer. Will you please support me?

Kristina Surface

Thursday, March 08, 2007

Two!

I am so excited to have to boobs. Never thought I'd say those words - let alone say them on the internet - but there it is. It's one step closer to normal, and normal sounds pretty darn exhilerating these days.

Yesterday I went to the plastic surgeon, and she removed the bandages and checked everything out. Things are healing nicely (and ahead of schedule), and I was given the thumbs' up to go bra shopping and to take a shower. I'm not sure which of those two excited me more - I am sick of wearing bras with pockets and surgical bras etc, but I also hadn't taken a shower (instead sponge baths and washing my hair over the sink) since the day of surgery.

In the best news of all, I'm already gaining mobility in my left arm. I need to get in to physical therapy asap, but I can lift my elbow above my shoulder on my left side again, and that really makes me hopeful.

I'm not allowed to start running for another week, and that's okay - I'm still pretty wiped out. After yesterday's trip to the doctor and then bra shopping, I was so wiped out that I was in bed at 7pm and it felt like 3am to me. One day at a time...and each is better than the last.

My mom has helped SO much with Tessa; Tessa is with her now. I don't know how I'd have done this without her! I love you, Mom. :-)

Kristina

Tuesday, March 06, 2007

The upswing

Well, today I am feeling a lot better than yesterday; I think that I'm on the healing trend now. Hallelujah - I'm tired of being a patient, and I'm tired of lounging in bed. Daytime TV is NOT interesting, and when I'm tired/uncomfortable/in pain/groggy from meds then I don't feel up to reading much. But today, I feel like maybe I can tackle a few things, and start to behave like a more normal person.

And speaking of normal people...
Underneath this huge, awful, white cotton bra that resembles a mini straitjacket, there are two breasts. Two! They are bruised (ouch), scarred, bandaged, and swollen, but they are mine. Soon, when I hug my daughter, there will be something soft for her to lean on. I will be able to wear tank tops and strapless dresses this summer. I will run on the beach in a bathing suit, and though my scars will be visible (about 12 inches of them across my back, for starters) the first thing people think when they see me will not be "cancer."

And the ugly little port is gone, too. I should be more sentimental towards it, given how much it helped me during the last 21 months...but instead, I am just relieved that it's gone.

And mobility? Well, the judge is still out on that one. I'm really tender on the left side, and so I have a lot of work to do - time to call Adrienne to set up PT appts. I'm hopeful, though. By the the fall, I plan to work out at the gym on all the weights, upper and lower body. And I plan to take some yoga classes. The mobility is a huge issue, but I'll work on it.

It will happen. Bit by bit, it's happening. Today it's my simple goal to walk around the block...but in October it's my goal to run a marathon. My work is cut out for me!

Sunday, March 04, 2007

Reconstruction photos

NOT MINE - I have been taking pics of each step of the way but I'm not putting them on my blog, as I do have SOME boundaries left. (However, if you are breast cancer patient and read my blog, I am all too happy to send you a series of photos of my reconstruction efforts; I have truly appreciated the women who shared their results with me, as seeing such pictures gave me hope. Just send me an email if you want to see my photos.) I don't want to give my father, father-in-law, or brother a heart attack by putting pictures of my breasts where they can see them, but I'll share with those who ask to see.

Anyway...
Here is a very well done website that shows some of what I have done as well, from mastectomy to implants (and then nipples). Frankly, this person looks a lot better than I think I will, because of my radiation scars etc., but it gives an idea.
http://myselftogetheragain.org/process.htm

So is this the hardest day?

I regret to say that it's not getting easier; I thought that today I'd be feeling a bit better. I'm really, really tender, and any kind of movement makes me super sore to the point of yelping (this includes deep breaths, reaching for the TV remote, pouring myself a glass of water....LITTLE things).

I keep hoping that if I can get some sleep (hard to do at this time) I will wake up feeling refreshed and ready to take on the day. So far this hasn't come true but I know these feelings won't last forever.

I can't wait until I can go running. Right now it sounds like the ultimate challenge, and when I'm well enough to run I'll know that I'm really actually well.

Saturday, March 03, 2007

As long as I don't move..!

I feel okay, as long as I'm sitting perfectly still. Sigh. I'm to the point where I count the hours until my next pain pill, and rolling, sitting, standing, or shifting positions HURT.

This too shall pass.

So far so good

Well, I was able to sleep moderately well last night, and that is a very good thing. A good rest is a cure-all for most things, I'm finding! I was tired not only from the surgery, but also from lack of sleep the night before. Tessa had been feeling my anxiety over this procedure, I think, and woke up sobbing "Mama, Mama! Hold me!" which was just heartbreaking...and more than slightly exhausting, as she did this for at least three hours on Thursday night, finally falling asleep in my arms in our bed. My heart went out to her...but it gave me a little pity-party, too, because I, too, was tired and anxious and this didn't help.

Tessa is in a great mood today, however....I've showed her my hospital bracelet, and my bandages, and since these things are (unfortunately) quite familiar to her, I think she feels better about the situation now.

I am very, very tender right now, and can hardly move my left arm, but this should improve with time. I am up and about, but I'm forcing myself to stay in my PJs today to keep myself down. Still, I've been able to help put Frontline on the dog & cat (no more ticks - PLEASE!), to help with breakfast, and to play a bit with Tessa. Ryan is being incredibly kind and considerate (and just finished vacuuming - boy is it sexy when a man vacuums ;-) ) to me and is encouraging me to rest, but I can't just sit in bed all day, because then I REALLY feel sick!

In addition to tenderness/pain in my chest, I have a really sore throat from the breathing tube (what's the name for that thing again?). This too shall pass.

I think that Ryan & Tessa are going to the "Grossology" exhibit today or tomorrow, and Shep has put in his request for a trip to the dog park. Not bad, all things considered. It's certainly been worse, and if this is the worst of it, I'll be okay.

Many thanks and much love to my parents for watching Tessa so lovingly all day yesterday so that Ryan could care for me and so that Tessa didn't have to hang out at the hospital for hours on end.

Love,
Kristina

Friday, March 02, 2007

Surgery # 7 Completed

I'm home!

The surgery went well, and I am now home and resting. I haven't seen the results yet as they're hidden under a Goliath of a white cotton post-surgical bra, but I am hopeful. I feel okay; I definitely won't be going out dancing any time soon but I've experienced much worse and I'm hopeful for a quick recovery.

It is good to be home.

Thursday, March 01, 2007

Okay, at least this time tomorrow it will be done!

Despite my bad attitude, I'm going about the preparations for surgery. The house is sort of in order (!), the freezer is full of food, childcare is lined up for pretty much all of next week, I bought some PJs that button up in the front, I made sure that Tessa got two great playdates today and some good 1:1 Mommy & Tessa time. I took the dog to the vet (because he got a tick - yuck), I did Herceptin....it's been quite a day.

My apologies to Beth who came over for a quiet coffee date (moms) and playdate (girls) and ended being swept up in my crazy afternoon! Thank you for understanding, Beth, and for watching Tessa so I could do the emergency vet run.

I'm tired and still haven't packed a hospital bag, but that's okay. I'm going to bed - I'll pack the bag tomorrow!

xoxo
Kristina

Wednesday, February 28, 2007

bad attitude

I've got a bad attitude.

I just got off the phone with the plastic surgeon's office, and I was informed that I will not be able to drive for about a week and a half.

Wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.

In addition to the problems this causes with caring for Tessa (preschool, swim lessons) I'm thinking about grocery shopping, playdates, errands. I'm thinking about how on earth are the next two weeks going to look?

I am so, so, so tired of being a patient. I want to be done. I want to fast forward the hard parts. I want to feel strong again. I want to move ON!

I do a lot of visualizations to stay strong; I've been thinking a lot of playing on the beach in Hawaii with my family. In my image, Tessa and I are holding hands and running into the surf. We're laughing, my face is turned to watch hers delight with amazement. I'm wearing the itsy-bitsy bikini that I bought, feeling good about myself, but not thinking of my body at all, jsut thinking of the moment....of Tessa's laughter, the warm water, the sun on our skin, the sand under our toes, the delight in Tessa's eyes, the feeling of her small hand, so trusting, in mine. Of Ryan watching us, and smiling until his eyes twinkle, happy. In that moment, the surgery will be behind me, not looming over me as it is now.

But even the vision is not helping me today! Today I'm sad and scared and resentful. Harumph.

Countdown to surgery

My new survivor friend, Maria, in writing about her double mastectomy, said, "It's like I have been erased." Her words took my breath away.

Yes, that's what it's like. Looking down on my chest, and seeing that flat line, really is like being erased. It made me feel small, insignificant. Unsure.

On Friday, I will get one step further to filling in the painting that is me; instead of blank spots on my chest (like after mastectomy) or pencil drawings of general shapes (like now, partially reconstructed with placeholders) we will begin to paint color and form. It is very symbolic to me in my journey that I get breasts back, and it is important to me to restore myself to some semblance of normal.

Today at the gym, I saw the looks. Confusion, then sadness or kindness or both, when women in the showers saw my deformed chest. I hope that soon it will not be quite so obvious, to them or to me.

On Monday, Tessa and Jessie and I were together, and the girls wanted me to read them a story. I sat on the couch, a beautiful little girl on either side of me, and we pulled out the first book. I tried to put my arms around each girl so that she could lean on me as we read, and it was impossible. My left arm doesn't lift that high, and my expanded chest is simply too rock hard and painful to allow a snuggle. In that moment, when I felt so filled with joy at the simple pleasure of reading with inquisitive, playful, loving children...I became filled with anger that I can't even cuddle, that I can't move the way a normal person can move.

I can't lift my arm to do the most basic of things. Driving is painful when I need to do shoulder checks, when I need to make a sharp turn, or when I need to pass a snack or something to Tessa in the back seat. Taking things out of the top cupboards is an act of will and balancing. Dispensing shampoo from the bottle, hanging at eye level in the shower, means standing on my tiptoes to raise my whole body where my arm will not go, so that I can catch the pumped shampoo. Walking with Tessa means gritting my teeth when she wants to hold my hand and hop and skip because it hurts my body. I refuse to NOT hold her hand - she is my daughter! - but I am so, so tired of the aches it causes.

At night, I awaken many times because of the discomfort or pain of rolling over; I can't get comfortable, and so I'm always tired.

I am tired of these minor, yet many, compromises. I want to just be able to move freely. I don't need to be able to lift weights, or to hang from a bar, or to do a lap of butterfly...I just want to stop hurting from doing normal, everyday actions. Now, I do some of these things, but it hurts, and it tires me, and it pushes me to the edge. But what else would I do - not drive? Of course not. I push on through.

Surgery is one step towards fixing that. Hopefully removing the expander will remove much of the discomfort; hopefully they'll be able to remove scar tissue without further damaging anything and I will be able to lift my arm again. For these reasons, I am looking forward to surgery. BRING IT ON!

But I'm scared, too. This is my 7th surgery since diagnosis. I know what it feels like to recover. The anesthesia makes me feel lousy, the pain meds make me feel lousy, the incisions make me feel lousy. Drugs to sleep, drugs to kill pain...drugs that numb my mind and make me an incompetent mother for the time-being. I know all too well what that feels like, and I'm bitterly resentful of it. I'm resentful that I will not be able to hug Tessa, or to let her hop along beside me as she holds my hand, while I heal. That I will not be able to make healthy meals for us, that I will not be able to do much.

This too shall pass. I hope it passes quickly, because I can't help but dread it. It IS worth it to me in the end, but it is still a terrible burden.

If this surgery goes perfectly, there will be one more surgery (nipples) and then tattoos (aereolas). If things aren't perfect (the implant on the left could slip like the one on the right, or they may be different sizes, or pointing in different directions....the radiated side may perform differently than the non-radiated side, even if we do the same procedures) then we'll need another corrective surgery before nipples.

I pray that I'm done with all surgery by my two year diagnosis anniversary, June 1. Two years seems like ENOUGH. I'll still be doing Herceptin through September, and Femara through 2011, but isn't two years of surgery ENOUGH?!

In a month, I will be able to hold Tessa tight to my chest, without hurting. My port will be gone (part of this surgery) and her head won't bonk it, making me yelp. I should be able to sit with a child on either side of me, snuggled up on the couch to read a story. Maybe I'll even be able to push Tessa on the swings, yelling "Underdog!" and hearing her laugh as I push her ever higher, running beneath her as she soars through the air.

I can do this. I've done worse. But with each successive surgery, it gets a little harder. I know what I'm getting into.