Wednesday, December 27, 2006

Another breast cancer angel

Today I received the news that an online "friend," whom I had mentioned in my earlier post as having posted her good-bye to the YSC group, passed away yesterday. She was a lovely woman, and a fighter, and she leaves behind children.

I hate cancer.

Sick Tessa

Well, Tessa's cold has morphed into something yucky, and the poor kid isn't doing all that well. We met friends for lunch in the Junction, but Tessa didn't really want to talk or play...she just wanted to lay her head on me. Uh oh - that's not my girl at all! We called the nurses' line at the clinic, and the nurse was concerned that her symptoms (fever, deep cough, lethargy, lack of appetite) all pointed to pneumonia. Needless to say, we went to the doctor today in a hurry when we heard that! The doc does not believe that it's pneumonia...yet. Tessa's lungs don't sound like she has pneumonia, but sometimes the doc says they can miss that, so the poor girl is on her second round of antibiotics this month. (Fortunately, the last time she had any was April '05 so she hasn't been overdosed with them. Phew.) I really discussed the pros and cons of another round of antibiotics with the doc, but in the end, the fear of this bug really getting into her lungs worse than it aldready is prompted us to go for the second round.

Soooo, our Christmas vacation isn't full of going to the Children's Museum or aquarium or snowshoeing or having friends around for dinner...instead, it's filled with Clifford videos, reading stories, snuggling, and naps. We are disappointed, but the required downtime is probably good for all of us at some level.

I went to Barnes & Noble and picked up some chapter books for Tessa - I can't believe that she's ready for them, but she's just eating them up. We finished an entire "Junie B. Jones" book in one sitting today (big thumbs down from me on that one, but Tessa liked it) and now we're reading one about a princess who loves ponies - you can imagine what a hit that one is! I have a feeling we'll make it through several of them by the time Tessa perks up.

Tomorrow Ryan will stay home with Tessa while I go to get Herceptin and then spend some quality time with Michele; Friday, Ryan will go out and about (I sense a bike ride coming on!) while I stay home with Tessa. If we're lucky we'll go snowshoeing this weekend, but only time will tell.


Saturday, December 23, 2006

Taking a moment to catch my breath

With all of the chaos in my life lately, I feel like I haven't sat down for a moment just to breath. It's 10:28 on December 23, though, and I'm finally feeling like maybe I'm going to get it all done. Maybe!

All of the Christmas shopping is done, and all but a couple of gifts are wrapped. The groceries for Christmas are purchased (including an absolutely huge prime rib that has become the family favorite for Christmas dinner), and the menu is planned. The house has been decorated for a while, and it's pretty clean (except the floors, but with a dog, a cat, and a child, it's hopeless to keep them clean so we'll do the big scrub an hour before people arrive on Monday). The cranberry nut loaf that I make every year is a bit different this year due to a cranberry shortage (what the heck?! we called a dozen grocery stores, everyone was sold out) so it's raspberry nut bread, but in any case most of them are done and a few are in the oven as I speak. Tessa made gifts for family members, and they are complete.

Now, we're moving into the phase where it's time to relax. It's not a moment too soon, because much more of this running around and I would have completely lost my mind! It's been hard to get into the spirit this year with my fears and back pain, but I'm taking periodic pain killers for my back (no idea what it is, but it can wait) and the fears have been set aside for the moment.

Tessa is delighted with all this Santa business, and who can blame her? Her child's delight is so wonderful, and genuine, that it helps to bring me out of my grinchy-ness.

Tomorrow we will be with extended family on the Dahl side, with a visit (we hope) from the Surface7. It's a big potluck feast, and it will be wonderful to just hang with everyone and catch up. The young cousins - Tessa, Caleb, Joshua, and Gavin - will run around and play, and the parents will get a chance to sit back and just watch them. We might even go for a swim at my parents''s all very low key, and I can't wait.

Christmas Day will be at our house. In the morning, it will be just the three of us, hanging out in our pajamas and opening gifts slowly. Around noon I'll start prepping the roast - there are 13-14 of us for dinner, and I hope to have a sit down affair with all the china and a crisp white tablecloth and candles. Good food, family, friends, should be wonderful.

And a little highlight to keep me going when I feel too busy - we're going to Hawaii in April! My parents decided that we must go, and we did NOT say no! We haven't been on a big vacation in a few years, and I can't wait to relax on the beach. When I'm feeling down or overly stressed, the thought of laying on the Hawaiian sand is enough to keep me going. :-)

And that's all for now. Merry Christmas, everyone!

Thursday, December 21, 2006

Clean scan!

Thank you for your thoughts and prayers.....they worked!

I just returned from the bone scan. The tech, Mike, had me wait while "the experts" reviewed my scans, and he confirmed that there was no evidence of disease. I now consider Mike to be my personal Santa Claus, and my Christmas wishes are taken care of!

Of course I still have to figure out what's wrong; I have pain and I need to figure it out. Frankly, though, I don't care what it is. If it's not going to kill me, I can deal with it. Herniated disc? Fine. Muscle spasms? Fine. Just not cancer!

Lying in the scan, which took about an hour, I believe I actually tasted fear. Fear tastes metallic and cold. Fear is looking up at the ugly ceiling tiles and wondering if this is it, if my time is up. Fear is wondering if this will be my last Christmas. Fear is wondering if my family could handle another cancer diagnosis. Fear, fear, fear. Unfounded fears, as it turns out. I have been granted a reprieve.


Wednesday, December 20, 2006

having a hard day

The news about my YSC friend has me down. My impending bone scan (tomorrow) has me down. My never-going-to-get-it-done feelings about Christmas have me feeling bah-humbug.

But here's the zinger. I recently read, from a reputable source, that women diagnosed with breast cancer when they are under the age of 45 have a 50% 10 year survival rate. Translated, that means that I have a 50% chance of being dead in 8.5 years. I already knew that I had an 82% five year survival rate, but somehow that seems easier to beat than 50% over 10 years.

**** (put your nastiest four letter word here)

Reading the statistic doesn't change anything, but I'm having a very hard time not thinking about it and basically it makes me feel weak.

Please do not say, "This doesn't apply to you." Please do not tell me that my good attitude will save me. Please do not tell me that it's all going to be okay, because you don't know that. Nobody knows that. I am watching amazing women fall, and it makes me hurt. Breast cancer doesn't discriminate, and it often takes strong, vibrant, amazing women with good attitudes, good diets, and good doctors. And I HATE IT.

Merry freakin' Christmas. I am feeling like Scrooge right now, and the lights on my tree, the cards on my wall, the carols on the stereo are not knocking me out of my bad attitude.

I hope this feeling passes soon.


PS If anyone knows of a good place to buy a new washing machine, please let me know. Ours died and we are currently on the hunt for a new one. That's what I'm doing today instead of wrapping gifts (sigh).

Please pray for a friend

Today I went to the YSC website, and read this:
This is the hardest e-mail I will ever have to write. I will be admitted into the hospital tomorrow. I would post this general thread but since out wind storm I do not have service. I have a terrible feeling that I will not survive this time. l want everyone to know how much I love you I am scheduled to be admitted tomorrow for drug rehabilitation- there are telling me finally that at the dosage to Deluded that I am currently on I am addicted and need to immediately be tampered down,

Even if I survive the rehabilitation I do not get a sense of exception that I will survive long term, and to be honest I do not have a positive feeling about the situation. I hate to say good-bye but to tomorrow you all and I do not want to leave without being honest with you and me. Excuse my drug induced writing I am sure that it does make a lost of sense.

I am making Peace with my fate so far and I resent leaving my family so young. I wish the best for everyone.

This wonderful woman has been living with stage IV cancer, and things are not going well. She needs a miracle.

She and I have never met, but I've shared her wisdom online. My heart is breaking for her, and for her family.


Monday, December 18, 2006

Update from Storm 2006

Just a quick update to let everyone know that we are okay after the big storm that hit Seattle last week. Our only damage was that our computer room got some water (seeping from the ground? we're still not sure how it entered the house) and ruined the carpet; we never lost power. We consider ourselves extremely fortunate, as we know many people who are still without power, all these days later. It's been at freezing level at night, and so this is particularly difficult for those who don't have heat and electricity. We have tried our best to help people out; we have friends staying with us as their house still doesn't have power and because they had the additional misfortune of having four feet (yes you read that correctly) of water in their newly remodeled basement. They are taking it well and I feel that I can learn a lot from their optimism and positive attitudes. It's especially hard during the busy Christmas season to have such troubles, and I am reminded how fortunate we are to have come out so unscathed from such a nasty storm.

My parents and my aunt & uncle are still without power; my grandma just got her power back yesterday. My parents' business is still without power and we are all hoping that it goes back online soon....pools etc without power can cause big problems and I hope that soon it will be back to normal so that my extended family can breathe a sigh of relief. My parents are living in their motorcoach - thank goodness for that, because they have a generator and so they're snug and warm.

I need to add here that I consider it a major gift that we are able to help our friends in their time of need. For over a year, all I did was take and take and take the support that was offered, and I am eternally grateful to all those who gave generously of their time and gifts to keep our family afloat. Now, as I sit here in good health, it is a gift and a treat to be able to help others. I am so grateful to have a house with a guest room, filled with toys for the girls to play with; for food in the cupboard; for warm bed linens; for friends and family. I am grateful for my strong body, so that I can easily provide a little babysitting or make a meal for others. I am so grateful to be in a position to GIVE instead of just taking, and I hope that our friends understand that really, they are giving ME a gift by accepting our help.

A short note here on the nature of floods: My heart goes out once again to the Katrina victims. Here in Seattle, many were impacted by the storm (though not nearly as badly as those in Katrina, I realize) but the major difference is that not EVERYONE was impacted, and so neighbors can help neighbors. Many families have bonded to help our friends...the men shoveled out mud together, some families took loads of muddied laundry and bed linens to be cleaned, others sorted through photographs and albums to save them, etc. In Katrina, everyone needed help, so many couldn't help each other, each needing their own help. In Seattle, many families have the resources to help each other. I can only imagine the devastation of Katrina, now that I've had this tiny taste of it here, and my heart goes out to those who still suffer from the aftereffects.

This is my first time on the computer since Thursday; since our computer room was soggy we had to remove everything, of course, and so we've just gotten back online. If I owe you an email, please forgive me!


Wednesday, December 13, 2006

spoke to Dr. Rinn

Well, today Dr. Rinn called me back (she'd been out of the office) and after hearing my symptoms she said she was not at all concerned. Femara causes joint pain (no surprise to hear that) and as she put it, "makes you creakier and more susceptable to pains." She said that the pain I had the other night was likely a muscle spasm, and that Femara might have influenced that, too.

She also said that if I needed a bone scan for peace of mind, she'd order it for me. I am now waiting for the scheduling call - I want that peace of mind. Ryan's the love of my life, but I want NED* to stay my boyfriend!

This is probably nothing. I just want to be sure.

And this, my friends, is what breast cancer is like. Lots of uncertainty. Lots of tests. Lots of needles. Lots of radioactive dye. Lots of 3 hour appointments.

I read recently in an abstract from the recent San Antonio conference for breast cancer website that there is a study that has determined that ER+ women (that's me) are most likely to recur between years 2-3 after diagnosis. This knowledge weighs heavily on me; June is my two year diagnosis anniversary. The good news is that after 10 years my odds of a recurrance are no greater than the general population, according to this study. Just waiting until 2015!


*NED = No Evidence of Disease

PS I am scheduled for Thursday the 21st; I should have results on Friday, just before Christmas.

Monday, December 11, 2006

alternate gift ideas

I got this in email today and thought I'd pass it along. My favorite breast cancer charity is the Susan G. Komen Breast Cancer Foundation (they are the recipients of the Breast Cancer 3-Day and Race for the Cure funds) at , but is very informative and they do good work too.
This holiday season, give the gift of medical knowledge and personal confidence to women and their loved ones around the world. Help them overcome their fears and get the best breast cancer treatment possible. Your donation will help continue to provide our programs at no cost to over 8 million visitors next year.

Perhaps you would like to make a gift in someone else's name this holiday season. Honor your family members, friends and co-workers with a heart-felt gift that is sure to be appreciated. This type of holiday gift is life-affirming, positive, and comes in any price denomination you like beginning at $5.

Consider the beauty of a gift that never goes to waste. For example:

-- Rather than giving bubble bath, a $10 gift to can provide 22 young women with the tools to assess their own personal risk of breast cancer and make lifestyle choices that reduce those risks.

-- Instead of buying an expensive pair of jeans, consider making a $50 gift to provide 110 newly diagnosed women with the gift of knowledge so that they can fully research and understand their diagnosis, pathology report, and treatment options.

-- In place of a $100 department store gift card, a $100 gift helps distribute 75 booklets to breast cancer patients and their loved ones who are seeking answers to critical questions about their pathology report, treatment options and fears about treatment.

Please know that every $10 that you contribute allows to support and educate the lives of another 22 of the millions of individuals living today who will be diagnosed with breast cancer in their lifetime. Thank you for your support!

To give a gift, please click here:

Our very best holiday wishes to you and yours.

Most sincerely,

Marisa C. Weiss,

President and Founder,

Hope Wohl,


Roller coaster ride

I hesitated to post this here, but since I'm aiming at honesty I've decided to post it. I originally wrote this for a post on YSC to get consolation from my breast cancer support group.

Every woman I've met (mostly online) has freaked out about mets at one time or another. I guess it's my turn to freak out...I'm still on the roller coaster ride.
Okay, it's my turn.

So far I have done a very good job of not freaking out over things. Up until now, I have not spent time dwelling on the idea of mets. Until now, I have not wondered if each little ache or pain was mets.

Sigh. I knew this would come but that doesn't make me any more prepared for it!

So it's my turn to freak out. I have had some pain in my lower back/hip area for a few months. I had chalked it up to being active and taking up running and having lots of surgeries in my upper chest/lat flap areas, so I had decided not to stress. I brought it up to my oncologist, casually, and she said, "No wonder you have a bit of pain every now and then - look at how hard you push yourself!"

But then last night I decided to have a bubble bath. I was just about to submerge myself under water, and I raised my hand to smooth my hair from my face, and suddenly I felt searing pain. I've had little tastes of that before and thought they were muscle spasms or something, but this was mind-numbnig. I waited for it to pass. I held still for 15 minutes, hoping that it would go away. Finally, I called to my husband (who was downstairs) to come up, and by the time he heard me I was sitting there crying. I couldn't move at all without searing pain in that area - sort of right above my butt, low back, on the right side. It took us 15 minutes to figure out how to get me out of the tub - I was terrified that if he lifted me the pain would be tooooo awful.

It took about 15 more minutes to get me out of the tub, dried off, and into the bedroom. Ryan helped me get in PJs, and got me some Flexoril and Vicodan (leftovers from my last surgery) and I was finally able to get into bed, where I sat without moving for another hour before the pain went away enough for me to sleep.

This morning the pain isn't unmanageable, but it's still there, and more than it had been in the past couple of months.

Now I can't make the thought of bone mets go away. I called the onc, who is out of the office today, but they'll call me back within the day. I've asked for a bone scan.

Can anybody talk me off the ceiling? Can you either assure me that this is not bone mets and a lucky pinched nerve or something, or convince me that if it's bone mets I will still be fine and live to be 100? Please?

One of the girls on the YSC site recently had something like this, but in her neck. It turns out that she "just" has a broken neck. Everyone has been cheering her and saying "I'm so glad it's nothing" and "Thank God it's a broken neck and nothing worse" and the like. She needs surgery, but the sentiment is understood: as long as it's not permanent and won't kill you, WHO CARES!

The flip side is that I know several online people who were recently diagnosed with mets (metastases: the breast cancer moved into other organs or bones) day stage II, the next, stage IV.


Sunday, December 10, 2006

Christmas Cocktail Party

We've come a long way, baby, and there is so much to celebrate!

And here I am a year ago (December 14, 2005): my last chemo treatment. Bloated face, no hair, and the fatigue and illness shows in the photos. I pray that I never feel that way ever again!

Tuesday, December 05, 2006

Finding meaning

Recently someone on my young breast cancer survivor's support group website posted a question about making changes after treatment was over, and trying to find meaning in life after breast cancer. This is something I think about constantly - truly constantly. I thought I'd share my response here, though it's not articulated terribly well, because these thoughts are what are lurking in my brain, trying to make themselves understood, much of the time.


This is something I think about all the time. ALL the time. I completely understand where you are coming from, though I do not quite have my mind wrapped around the answers yet.

Here is what I think I understand so far:

We are all here on this planet for a short amount of time. Having cancer doesn't necessarily change our timeframe, it just makes us aware of how mortal we are, and reminds us that old age is not a guarantee. It is this awareness that makes us different from others: other people, those who have never experienced a life threatening health crisis, do not yet understand that life is short. We understand it in ways that we never dreamed of, and this changes us.

The change is frightening; loss of innocence is frightening. However, for this price (it is NOT a gift, as it has come at a heavy price) we gain some keys to insights not previously offered to us. I think that the insights are different person to person, but I can share mine with you.

1. We only get one body, and we must take care of that body or suffer the consequences. Before my diagnosis, I was 20 pounds overweight and not exercising regularly, full of the regular excuses (no time, daughter wouldn't go to a gym daycare without crying, too tired, etc). Now, I watch my health - including my diet and fitness - because I know what illness feels like, and I don't wish to repeat my experiences of being a critically ill patient. Diabetes, heart disease, osteoarthritis, etc. are all conditions influenced by lifestyle, and if I can avoid those diseases I will. And, of course, the 50% reduced rate of recurrance for those with a healthy BMI who exercise regularly but not obsessively. I always knew that it was good for me to take care of my body...but now I do. No excuses, I jsut do it.

2. I am a likeable person just the way I am - I do not need to put on a false front to please other people. I have always worried about what people thought of me; I think everyone does to some degree and perhaps I did more than some. Well, with cancer, I was stripped of pretense: my body was completely distorted (no breast, bald, 20 extra pounds from dx, etc.), I was hardly able to think a coherent thought (couldn't read The New Yorker because I couldn't favorite magazine!), I couldn't offer to help a friend because I was too tired...all of the usual. And people still liked me. And they told me that I was inspirational, and they drew close to me. This startled me more than I can say; at first, I didn't understand it at all. Now, however, I see more in myself of what they saw. I am generous with my friends, I am enthusiastic and optimistic, I love to laugh, I am loyal to my friends, and I am kind. I don't question these things any more, and therefore I allow my real self to show through all the time. I talk a lot, I'm unusually outgoing and social, I love to have people over all the time and cook for them...and I love it. I don't shut up to please people by being quiet; I speak my opinions loudly, though hopefully not rudely...and whaddayaknow, people like it and listen to me!

3. I am stronger than I ever dreamed possible. This strength means that I do not feel fear of the unknown in ways I have felt fear before. I am not afraid of saying the wrong thing; I can handle the consequences of speaking my mind. I am not afraid to run a marathon, because the pain of training is nothing compared to the pain of treatment. I can help others in pain, because I know what pain feels like, emotionally and physically, and I'm not afraid to witness it. I am stronger than most people, and as such I have a responsibility to myself and others to use that strength.

4. I am worth it. I am worth pretty clothes, time to read good books, date nights with my husband, a bottle of wine shared with girlfriends, walks on the beach, a good haircut....I am worth it. I do not mean that I now need to spend beyond my means to have nice things, just that I am worth it and I don't need to justify my existance to anyone. I know my own value, and it is high.

5. I am meant to do something meaningful on this planet. I have decided that my task is to be a part of finding the cure for breast cancer. I am working with the Susan G. Komen Foundation to fundraise, and I will not stop until we have found a cure. I find great meaning in this work!

6. My will to live is stronger than I ever imagined possible. There is no pain that I would not endure to stay alive to watch my daughter grow, to laugh with her, to hold her hand as she becomes a woman. I am not afraid of knives, needles, poison.

These thoughts are still disconnected; I think about them constantly, and try to figure out the pieces. I know I must run a marathon, work with the SGK to find a cure, speak out against the disease, fight the hard work that it takes to make my marriage the best that it can be, and spend more time playing with my daughter and holding my husband's hand and laughing with friends and building sandcastles on the beach and hiking and cooking for friends than I spend commuting, doing laundry, worrying about what others think of me, or playing Keep Up with the Jones'.

I am NOT the person I was before diagnosis. Cancer has changed me, for good and for bad. Like you, I refuse to let the lessons slip away. I am changing my life's habits, and hopefully modeling them to my daughter so that she can grow up with these ideas of herself.

I am a PollyAnna and proud of it. I have my moments of sheer terror and anger and confusion, but when it comes down to it I am an optimist, and I am determined to take the good out of this situation and use every last drop of it.

And with all of those ramblings, I'll close with this last one: I am committed to squeezing every last drop of living out of every day. I am always up for an adventure, and I seek out beauty in my life, reveling in it where I find it (whether it's the smile of a friend, or the power of a rainstorm, or a delicious piece of chocolate cake, or a pretty piece of jewelry, or the kindness of a stranger, or a hike in the forest, or....well, you get the idea!) and never forgetting for one minute how lucky I am to have these moments.

Monday, December 04, 2006

It's everywhere

There are SMALL advantages to having breast cancer; they don't make it "worth it" and they're not gifts (I've paid heavily, thank you very much!) but I take what I can get. One is that when I get telephone solicitors seeking donations, my truthful story that "I was diagnosed with breast cancer last year and all of our charitable funds are going towards that cause," really gets them off my back.

Today, just a minute ago, the call was a bit different. I politely told the lady from the Seattle Aquarium my line, and she said, "I'm so sorry. My mom died of breast cancer 38 years ago, and I know how that is." The woman then asked me questions, commiserated with me, and told me that she was 25 when her mom passed away. It was obvious that she still misses her mother, and that she needed to talk about it for a minute. She mentioned how barbaric the treatments were; I agreed with her. I know that the treatments were worse then, and the prognosis was worse...but I couldn't help but think of being slashed (mastectomies, node dissection, hysterectomy/oopharectomy, port), burned (radiation...oh that was rough!), and poisoned (chemo; I will never forget my allergic reaction, in addition to the "normal" chemo side effects. Slashed, burned, and poisoned...I am convinced there must be a better way!

These conversations only strengthen my resolve to find a cure. Fast. Of course, looking at some stats, it will be a miracle if I live to see Tessa at 25; I want much much much much much more than that.

Fighting with every minute!


Tessa and Santa

Tessa loves to visit Santa! Here's a memory shot of Tessa with Santa when she was a baby, alongside Nina and Lexi (I love that shot!); and here are this year's Santa pics: Santa and Tessa, and then Tessa with Lexi & Nina again. This year all three girls had fun...but it really brought back the memories to see them together with Santa again. Tessa was doing only the cheesiest of smiles, and then this tongue much for showing off her pretty face! The tongue picture does capture some of who she is right now, though...silly and playful.

I am healing well. As a matter of fact, I did a dinner party for 10 yesterday (my dad's birthday) and recovered just fine. Hurrah! And now I'm off to run 100 errands...!


Wednesday, November 22, 2006

Then & Now

I thought it was time for a then and now post. There I am, the day before my mastectomy with Carolyn & Susan; then the bald pictures....which coincide with the fat pictures; then, a body shot after losing a lot of weight; and then the most recent body shot (lost even more weight) at Halloween. (These may be mixed up in order, so you'll have to use your imaginations!) Things have changed, and this Thanksgiving I have a lot to be grateful for. (I should get a "hair shot" where I'm not wearing a long sparkly wig...!)


Thursday, November 16, 2006

Home again and doing well

I got home from the hospital on Tuesday night, earlier than anticipated, but I've been pretty out of it until today so haven't been on to update. I'm still loopy from Vicodan and need my afternoon nap, but I did have enough energy for a short post.

My new breast is tiny and bruised, but she shows potential. And the implant exchange on the other side went well, with almost NO pain post-surgery, and looks and feels almost exactly like a real breast (instead of the rock that it felt like with the expander in place).

Today I got the drains removed - hurrah. Those things are necessary, of course, but felt evil. This time, getting them pulled hurt...but it's done and that's a good thing.

I have felt surrounded by friends and family. My mom is staying with us until tomorrow to help care for us and I'm truly grateful.

I'm on Vicodan for pain and today I've been up for the first time, and actually left the house to go to the coffee shop (LOVE C&P!) and then to the plastic surgeon's office to have the drain I'm a bit wiped out now, and ready for a nap. But I love that with each passing hour I feel a bit better, and that I will continue to get better and better with no major setbacks looming on the horizon. HURRAH!

I'm loopy from the meds but let's see if I can get this thought down:

When I was first diagnosed, and had my mastectomy, I told Tessa "It's okay. One day the doctors will build me a new breast," and that thought carried me through some dark and dismal days. "One day" seemed like it would never come, but I held the thought. Well, that day finally did come, and I'm so glad of it. Seventeen months without a breast felt like ENOUGH, and I feel, as this new body part grows to resemble what it is replacing, that maybe I can put some of this behind me and move on to my real life...the one post-treatment. Sure, I'll be taking Femara, getting scans regularly, going for Herceptin infusions, talking to my oncologist etc....but the really really hard stuff is behind me and that is worth celebrating. "One day" has finally arrived!


Friday, November 10, 2006

Surgery Update- Success!

Hi All

This is a short note from Ryan (aka the hubby) that Kristina's reconstruction surgery went very well today. Both Dr Miles and Kristina are very happy with the result. Kristina, and her TWO breasts, will be recovering at Swedish (main hosptial corner of Broadway and Madison) for the next few days and is currently in Room 812 SW. Thank you all for your thoughts and prayers and well wishes. Thank you Grammy and Grampa for taking Tessa and Shep on a jaunt in the Motor coach and thank you Marisa for coming to hang out at the hosptial with the spouse for a few hours while he awaited the results. The next post will probably come from Kristina in the next few days

Thursday, November 09, 2006

Stomach flu update

Tessa napped for two hours (unheard of!) and she's up and feeling MUCH better. Hurrah! We've cancelled all social plans but we're going to run a couple of errands to prepare for the busy week(s) ahead....

Please, just no more barf, that's all I ask.....!

Tessa has the stomach flu

In 24 hours I am supposed to leave for the hospital to have surgery, and my baby has the stomach flu. WAHHHHHH! She woke up and said, "My tummy hurts" which she never, ever does (some kids talk about sore this and sore that, but Tessa doesn't ever mention things like that, so when she does I really stand up and take notice) and she's thrown up a couple of times this morning, despite the fact that she didn't eat a bite of breakfast. We are laying low and I'm doing my best to take care of her; we've read stories, and we've had a bubble bath together, and lots of snuggling in the rocking chair has occurred. However, right now she's under the covers, blanket and bear and two mermaid dolls in hand, looking pale and saying "Mommy I just want to rest."

Wahhhh. My poor, sweet girl does not need this now any more than I do! She's a bit anxious about my surgery, too, I think, and about being apart from me for a long time (5 nights in the hospital for me, and then I won't be able to care for her for a while after that), and I had set aside this day as a "fun" day to play together and just enjoy each other. We were going to meet the Hisatomi's to play together, and then meet the Landahl family at the children's museum in Bellevue to play and have dinner at Red Robin, and needless to say, that's off the calendar.

I can't wait until the Christmas holidays. By then, this will be a memory, and I'll be living my regularly scheduled life!!!

Wednesday, November 08, 2006

Less than 48 hours 'til a boob job

I have known since the day I was diagnosed that I would do reconstruction. I have not wavered, not one little bit, in that decision, and I am not wavering now.

However...I was diagnosed nearly a year and a half ago, and on Friday I'm going to do reconstruction on the treated side. That's a year and a half of cancer treatment, and I'm so, so, so tired of it all. I took a break from anything major from June (when I was mostly healed from my lat flap) until now, only doing Herceptin & Femara for treatment (and the usual bloodwork, onc visits, etc.). On Friday, I will be back in the hospital, and I will feel horrible, and I can't believe that I'm about to enter that land again!

It's worth it. I know that. But it's very hard to say, "I know I feel good now but I'll feel pretty lousy soon," and to do it voluntarily.

I want two breasts. I DESERVE two breasts. We all do! I guess I just want a pep talk of some sort...anyone???

Tuesday, October 31, 2006

Volunteer Job!

I have been anxiously awaiting a call from the local Komen office to discuss my participation in the Race for the Cure Committee this year, and it just came in. I'll be working on website content (using my writing and marketing knowledge) as my primary task, and I'll also be on their list of who to call when they need help. I'm ready to get my hands dirty....I am fighting breast cancer on as many fronts as possible!

The Race for the Cure and the Breast Cancer 3-Day are each incredibly worthy events. The Race's funds go primarily to the local (Puget Sound) affilliate, and those funds are used to support underserved and underinsured women with awareness, mammograms, and treatments. I almost took it for granted during my treatment, but I would have had a whole different set of problems if I couldn't afford tests and treatments. Every woman deserves a mammogram, regardless of income, and The Race tries to see that every woman has that kind of access, and that no woman is denied treatment due to lack of funds. I am giving my time to this important cause, with the belief that every woman needs the kind of care that I received during my diagnosis and treatment, and that money should not be an obstacle in receiving such care.

The 3-Day's funds go primarily to research to find the cure. The Komen Foundation gets most of their research money through the 3-Day, and that is why I am on a team again for 2007 to raise even more money for the 3-Day than we did last year. My only hope of sleeping well at night when Tessa is a woman is the hope that we will cure breast cancer in the next twenty years, and research is the only way to do that. I am passionate about fundraising for the 3-Day, and that is why I will be soliciting money from all of my friends and family when it's time for that event next year.

Two events for the same organization, with different goals, and I'm proud to be a part of each of them. I am ready to get my hands dirty (as they say) and dive into the hard work that is ahead. It is something I will do with passion and drive, becaues I believe so strongly in the cause. I will continue to support organizations who give to breast cancer causes, and I will model for the Northwest Hope & Healing fashion show, and I will have a hard time saying "no" to anything else that comes up. I'm ready to fight....and I'm so relieved to fight for everyone through the Komen Foundation, and not just to fight for my own life.

Update on the colonoscopy: benign!

I got the call yesterday that my pathology report was clean; the polyp had no cancer. I'm more relieved than I can tell you.

Monday, October 30, 2006

Pumpkin Patch from earlier this month

I'm in picture mode...
Here are some pictures of Tessa and friends (Derek, Paloma, Nina, Lexie) at the pumpkin patch in Woodinville, the South 47 Farm. A wonderful, sunny day!

Trick or Treat in the Junction

We went trick-or-treating in the Junction on Saturday with our friends Jessie (ballerina), Liam (bat boy), Zoe (Stephanie from Lazytown), and Tessa (dragon). I loved the dragon costume; we'd insisted to Tessa that she must wear something warm (NOT a mermaid costume) for trick-or-treating, and she fell in love with the dragon from Grammy. Thanks, Grammy!

Halloween Party!

Here are Tessa, Ryan, and I (aka Ariel, King Rydent, and Ariel's mom....the Mermaid Family!) at the Hisatomi's party last weekend. It was fabulous! The other shot is of Jessie-Ariel, Tessa-Ariel, and Nina-Fairy-Princess.

Thursday, October 26, 2006

Surgery date rescheduled

I don't have time to go into the details right now, but due to a scheduling error on the part of my plastic surgeon's office, my surgery has been moved to November 10 at 2pm.

Sigh. I just want to get this thing over with! I am REALLY looking forward to having two breasts, and despite my frustration at the scheduling/postponement, I am deeply excited about seeing the final results.

Monday, October 23, 2006

Colonoscopy update

I had my colonoscopy today, and they found one small polyp and some internal hemmorhoids (sp?). I will hear in 10-14 days what the pathology of the polyp was, but they're not particularly concerned. And now that I've announced the state of my colon on the internet (really, do I have ANY boundaries left?!) I will go so far as to say that I'm actually relieved that there were 'roids, because that might explain some of the blood in the stool that sent me to the colonoscopy in the first place. As long as it's not cancer, I can face it...

Chemo really, really messes with the system. Here I am, ten months after chemo, and my body is still showing wear and tear from it.

I have to state, for the record, that the "drink" (Fleet phospho-soda, I believe) that you have before the colonoscopy procedure is truly the nastiest, most foul, awful, disgusting stuff that has ever passed my lips. I had to have it before my hysterectomy, and I had it twice again to prepare for the colonscopy. It's designed to completely clean out your system, and it is very effective at doing so (here, I will spare you the gross details). The mere thought of it sends me into literal shudders, and makes me gag and choke. Really, can't they come up with something even a bit better?! A couple of hours after taking it, I was throwing up, feeling horrifically nauseated, shaking with chills, and miserable. YUCK. (It is insult to injury here that I have a nasty, nasty cold, with a raspy voice, cough, etc. on top of all this.)

The procedure itself was no big deal, however. The drugs made me happy but lucid enough to watch some of the procedure on the screen - I think I dozed on and off. The "no boundaries left" thing is helpful in situations like this...I've been poked and prodded and cut and such by so many medical procedures that one more doesn't really mean anything to me; I'm able to disassociate from my body somehow to get through it. This is a helpful skill, it's just unfortunate that I've had so many opportunities to practice using it.

I'll update when I have more info about the pathology results.

Oh, and because some have asked....I haven't yet had the additional genetic testing. It's a new new that the lab that conducts the testing doesn't have the insurance codes, and the insurance company doesn't have the insurance codes. I'm still working on figuring out if insurance will pay for it, and we'll go from there.

Thursday is my next big medical day, with four appointments: follow up with oncologist, Herceptin, meeting with plastic surgeon, and physical therapy (I'm going to do the treadmill test again...should be interesting!). The plastic surgeon will tell me if I"m ready for surgery on Nov. 7, and I pray that I will be able to go ahead with it. The sooner it's done, the better. I REALLY want to be done with reconstruction by my two year diagnosis anniversary. Isn't two years enough?!

So, I continue on in Medical Land. It's not Cancer Land exactly, but a bordering country.


Sunday, October 22, 2006

I ran 9 miles!

I can't believe I did it, but yesterday Michele, Susan, Adrienne & I all completed the Halloween 1/2 Marathon in Olympia. We had planned to run half, and walk the other half, and we'd worked out a plan for doing so. Well, we were all overly we started running more, and walking less....and whaddyaknow, by the end we'd run 9 miles and only walked 4.1! This blows my mind - I really, truly did not know that I had it in me to run so far, and I'm really excited by it.

And, I must add, I have the most amazing friends to run with. The camraderie is fablous, and we're very fortunate to be paced well with one another. We did all but the last minute together (and I'm not ashamed to say that I was LAST!).

Today I've got a nasty, nasty cold, and I've almost lost my voice. I was getting this cold yesterday (I nearly bailed on running the event) but held on....and now the cold is here for real. Coughing, sneezing, congestion, sore throat,'s a real pleasure. (Not.)

And, to make things just a little more fun, I'm preparing for a colonoscopy tomorrow. (Read: I have to drink nasty stuff to clean out my system, and I'm on a 24 hour liquid diet.) I pray that they don't find anything...I'm hoping that my problems are a residual from chemo, and not colon cancer. Tomorrow we'll find out more.

At least as I sit here miserable I can think back to yesterday's glory with the run!

As of now, we (the aforementioned team) are looking at running the Portland Marathon in 2007. If I can run 9 miles with so little training, imagine what I could do with lots of training....! Hopefully, I can run 26 miles in 5 hours or less. (That would NOT set any records. That would be a slow time. But slow is fine with me....and since some people take 6 hours, 5 hours seems like a reasonable goal!)

Monday, October 16, 2006

State of the body

I keep meaning to update here daily...and life gets in the way. This is usually a good thing: I'm doing "normal" things like cleaning the house, taking Tessa to playdates, going running, etc. It's about time. ;-)

I thought, though, that I'd include a body update. Some is good, some is less than perfect, but as long as I'm NED I can accept what I'm given.

Here goes:

Breast cancer: I remain No Evidence of Disease (NED). I get blood work every 3 weeks, and every time it's coming back "perfect." My doctor does not do routine scans (this is a debate in the oncology world, but after reading the studies I agree with her conclusions) but there are no signs or symptoms of breast cancer. Excellent!

Bones: As I mentioned previously, I lost 11% of the bone density in my spine last year. This is not entirely unexpected due to the sudden onset of menopause and the addition of Femara (aromatase inhibitor - removes estrogen from the body) but it's frightening because the numbers are so high. I am trying to counter these effects with diet, exercise, and supplements. I'm running regularly, eating leafy greens and drinking lattes for the milk, and taking 1500mg of calcium + D every day.

Joint pain. This is another cause of concern for me. My first 5 months or so of Femara had no noticable effects, but for the past couple of months I feel like an old, old, old woman. When I've been still for a while (sitting down for dinner, kneeling on the floor to play with Tessa, or, worst of all, waking up in the morning after a night's sleep) my bones HURT. It takes my breath away it's so painful, and I find myself hobbling and gasping because of it. The good news is that this only lasts a short time, and I can "walk it off" but it's a really, truly unpleasant side effect. I refuse to consider going off Femara because it's supposed to be so good for me, but I'm counting down the four years and three months left until I'm done with it.

Lymphedema: My left arm/hand have problems with swelling. My rehab doctor gave me a real lecture last time I saw him, reminding me that people get REAL problems (like staph infections and death) from lymphedema, and I need to take better care of it. That's why you'll see me wearing the ugly sleeve and glove more often these days. It's a lifelong condition, too, which is rather unfortunate. It doesn't hurt all the time but sometimes I feel my arm just throbbing, and when I'm getting a flare-up it aches.

Hot Flashes: Menopause is not particularly fun. I ocassionally have monumental hot flashes that cover my entire body with sweat and make it hard for me to concentrate on anything but how horribly, uncomfortably hot I have become...although fortunately, these hot flashes have lessened and mostly been replaced with more irritating but not overwhelming hot flashes (still hot and uncomfortable, but not so sweaty). Every night I still get them, too, sometimes with night sweats, and this is not great because it disrupts my sleep. There isn't much to do about them: I can't take any form of estrogen/hormone replacement, so I truckon on, hoping that one day they go away.

GI Tract: I'll spare you the gross details, but I'm not healed from chemo, and I have some ugly side effects that are probably just residual from chemo, but I have to have a colonoscopy to check it out. I also have to take Metamucil (sp?) and some prescriptions to see if we can correct the problems, despite my high fiber diet with lots of water, fruits, and veggies.

Mobility: My lat flap (untreated) side looks good, and I can move my arm as much as I desire. My treated side is still tight, however, and I continue to do physical therapy with it to regain full range of motion.

Skin: My skin is still not completely healed from radiation. I will find out on the 26th whether it's ready to go for the next surgery; I'm optimistic about this but there is a chance that it's still too soon.

Reconstruction: The tissue expander on the prophylactic side looks like it's the full size to me, and it looks okay, though it's rotated due to my high levels of activity (which gives it a strange lopsided look). Nov. 7 I'll do the same procedure on my treated side, and I'm looking forward to having two breasts, but dreading the surgery because it was so, so hard (painful) last time. The tissue expander makes my breast ROCK hard - like having a turtle on my chest - but when I get the expanders exchanged for implants (most likely silicone) they should return to a more normal feeling. That's good, because when I hug people I feel like I'm damaging them and me...and I hate that when I snuggle Tessa "it" gets in the way.

Portacath: I have started my second year of Herceptin treatment, and I will keep my portacath for as long as possible to get through that year. The portacath is "loose" and sticks out of my skin (in part due to the reconstruction, in part due to my weight loss), but it's still worthwhile because my veins have a tendancy to close up when a needle walks in the room. I have to remember this when Tessa accidentally bumps it and it makes me yelp in is worth it, it is worth it!

Hair: While it's not the haircut I desire, I'm pleased that nobody would look at me and think "cancer patient."

Running: A week ago, I ran my first 10k. It took me an hour (9:44 min/mile) which is no land-speed record, but I'm still proud of myself for doing it and not collapsing at the end. I'm scheduled to run/walk a 1/2 marathon at the end of this week, too. Hurrah!

Weight: I no longer count points for WW, but I am still adhering to the WW philosophies as a "lifetime member." My weight fluctuates up and down a couple of pounds, as is normal, and I use the scale as a guide to remind me when it's time to ease back a little. I'm not afraid of a pound or two, but it's important to me that the pounds don't start adding back up, so I'm diligent about staying on top of even a pound or two gain, so that I never have to fight a "big" weight loss battle again. I love my new physique: it's not perfect by any means, but I'm proud of the changes I've made, and the impact they should have on my health.

That's all for now - I'm off to pick up Tessa from Jenny's. Hopefully this post will answer some of the questions I've been getting about how I am: I'm doing very well, despite the unfortunate reminders that cancer treatment has left me with. There are days that I feel like a very old woman...but I can live with that as long as I get to live.


PS Okay, one other update: yesteray I got the stomach flu, and today I've been having back spasms. YUCK!

Thursday, October 05, 2006

Make a promise!

Will you make your promise to get annual mammograms? I just made my promise, and my little click donated $1 to breast cancer research (The Komen Foundation). The first 50,000 promises each generate a $1 donation from Siemens.

To the stranger at the cancer resource center today

Dear lady,

I saw you perusing the bookshelves in the breast cancer section; you picked up titles, sighed, put them back. You wore your bald head like a warrior, clearly visible despite the baseball cap covering the top. You looked up at me, giving me space to find my own reading material, and when our eyes met, I saw a lot of pain. You said, "Surely there is something here to help me through a bad day!" and I took a chance, and decided that *I* was the answer, not the books.

"Look in my eyes, " I said, "and you will see yourself in a year. Look at me! Look at my hair - sensible mom hair that I enjoy complaining about - and know that this time next year, you, too will have hair. Look in my eyes: do you see the life there? Do you see how I'm running all over the place, busy with the everyday, despite the fact that I'm here? Do you see my new, strong body? This week, this body took me running 4 times already, and this weekend it will carry me through my first 10k in years. Look in my eyes! You will be like this next year. You will get your life back. You will become busy with the mundane of life, as well as the joys of life. You will still come back to this building, you will still be a woman with a history of breast cancer, but it will not take over your every minute. Look at me, and see yourself. You can do this!"

Last year, I was the bald lady, living from one treatment to the next, and so, so, so scared. This year, I am so much stronger, healthier, and more optimistic. I have bad days, but they are only days...and the rest of the time I spend doing all the things that I wish to do in my life (plus a million chores and errands). My hair has returned; my energy has returned; even my breasts are returning (one surgery at a time!).

You looked at me and cried, gasping "Thank you" and I hugged you - a total stranger - and hoped that some of my strength could pass to you. I hope I didn't cross too many boundaries, but I wanted so much to give you hope, and to let you feel the strength that is mine that will soon be yours again.

Sweet lady, whoever you are, you are in my thoughts and prayers today. I hope that I see you next year, waiting for your annual appointment, a twinkle in your eye and impatience in your feet to get going, to leave the doctor, to go about the business of truly living, and not just of staying alive.

There is a long way between the pain of diagnosis and the heat of treatment to where I am now. There IS another side, and I hope to see you come join me on it soon. Hang in there, sister. You can do this!

Kristina (the stranger in the breast cancer section of the cancer resource center today)

Monday, October 02, 2006

A long, long overdue thank you

I sent this email to my sponsors today, but I do not have email addresses for everyone, as some visitors to my blog sponsored me and the 3-Day does not share out those addresses. Please accept my humble thanks.
I have been intending to sit down and write each of you a heartfelt letter of thanks for your donations to the Breast Cancer 3-Day, and for your support of me. I still intend to do just that, but since life has been getting in the way of my doing so, I'm at least starting with an email to you as a means of saying THANK YOU.

The Breast Cancer 3-Day was an amazing experience for me. The weather was perfect, my walking companions were amazing, and my body was cooperative in finishing every step of the sixy miles....but it is you, my sponsors, who really had the greater accomplishment. I raised a total of $6,165.00, and my team raised a total of $30,907.25. I am absolutely in awe that a team of amateur fundraisers could come up with over thirty thousand dollars...and it is all because of you. The Seattle Breast Cancer 3-Day raised a total of (are you ready for this?) $6.8 MILLION DOLLARS! That is a lot of mammograms, a lot of shower cards, and (best of all) a LOT of research. Your money really makes a difference. It makes a difference to me, personally, that you are willing to fight against the disease that threatens my life; it makes a difference because your dollars are going to be part of ending breast cancer forever.

The walk itself was nothing short of incredible. I wrote about it on my blog at if you would like to look. I met survivors, co-survivors, and people who simply cared enough to walk. (One of these was a man who walked the entire 60 miles in knee-high Doc Marten boots and a utilikilt. I asked him what brought him to the event, and he said, "It's time to cure breast cancer." I asked him how he had been affected by the disease, and he said, "I'm lucky, I don't know anyone with breast cancer." WOW - I consider him a real hero!) My team made me laugh, and made me cry, but every minute was filled with pure joy.

On the walk, I often saw signs saying "Every step counts" and "Every step leads us closer to a cure," but I know that isn't true at all. Every step made me feel good, and healthy, but it is every dollar raised that leads us closer to a cure. Your sponsorship enabled me to do the walk, and your sponsorship is part of finding the cure. I daydream sometimes about how that money raised is being used; I think that maybe the $30,907.25 that my team raised is paying one researcher's salary (they're notoriously underpaid!) and that maybe it's THE researcher, the one that will have a breakthrough that will bring us to a cure.

I am grateful, from the bottom of my heart, for your sponsorship. Thank you so much for choosing to support a cause that is so near and dear to my heart. I believe that we will find a cure, or at least a less heinous treatment plan, by the time my daughter Tessa is a woman old enough to be worried about getting breast cancer. I pray that we will have more breakthroughs before I receive yet another phone call from yet another person with tears in their voice, shaking with emotion, saying,"I have it too." It gives me great comfort to know that the work I am doing, that YOU are doing, is making a difference, and that every day we are one day closer to having answers.

I am not done, though the 3-Day 2006 is over. I hope that you will consider sponsoring me next year when I do the event again - yes, again! - as I continue to fight this disease on both a personal and a public level. Next year I hope that you will sponsor me again, and that you will feel some of the "high" that I feel in knowing that you are a part of the cure. We are not sitting on the sidelines crying: we are fighting to the finish!

Thank you for being at my side, and for carrying me in your thoughts, as I walked. Bless you!


Article about BC Survivor

This link was posted on the YSC site that I visit, and I found it so inspiring that I wanted to post it here.

Sunday, October 01, 2006

Tessa's first two-wheeler

Looks like Tessa's a biker like Daddy. Look at that smile!

Thursday, September 28, 2006

Test results

Today I had two of my tests: the MUGA (for heart issues related to Herceptin) and the DEXA (for bone density) tests. I have not yet had further genetic testing because we're waiting to see if insurance will cover it.

The MUGA went well. There were no significant changes from previously, and I believe that this means that I will qualify for a second year of Herceptin, perhaps improving my odds even more. The study data on extended (more than one year) use of Herceptin isn't in yet, but I'm hoping that more is better. I'm very happy about this.

The results of the DEXA were not so good. I have lost 11% of the bone density in my spine since last year. This is way, way, way more than I expected, and I'm really upset by it. I'm borderline for osteopenia (the precurser of osteoporosis), still in the okay zone, but I am expected to lose some bone density annually from here on out (menopausal, no estrogen due to the lack of ovaries, and taking drugs - Femara - that promote bone loss) and this rate is truly terrifying. A lifetime of bone fractures is scary. 20% of women with hip fractures from osteoporosis die of complications.


Part of what is making me so sad is that I'm trying so, so, so hard to be healthy and strong and to take positive control of my health, and I'm eating healthy food and exercising and taking calcium and vitamin D and all the it feels so grossly unfair.

Today I was listening to a Sheryl Crow song, "No one ever said it would be easy; but no one ever said it would be this hard." That about sums it up right now.

Don't get me wrong. Life is busy in mostly wonderful ways. I feel healthy and strong. Mostly, I feel optimistic. But today, I'm saddened by the news that my body has yet another challenge to deal with, and I feel overwhelmed by it. Tomorrow, my PollyAnna attitude can return...but today I'm tired.


Test results

Today I had two of my tests: the MUGA (for heart issues related to Herceptin) and the DEXA (for bone density) tests.

The MUGA went well. There were no significant changes from previously, and I believe that this means that I will qualify for a second year of Herceptin, perhaps improving my odds even more. The study data on extended (more than one year) use of Herceptin isn't in yet, but I'm hoping that more is better.

The results of the DEXA were not so good. I have lost 11% of the bone density in my spine since last year. This is way, way, way more than I expected, and I'm really upset by it. I'm borderline for osteopenia (the precurser of osteoporosis), still in the okay zone, but I am expected to lose some bone density annually from here on out (menopausal, no estrogen due to the lack of ovaries, and taking drugs - Femara - that promote bone loss) and this rate is truly terrifying. A lifetime of bone fractures is scary. 20% of women with hip fractures from osteoporosis die of complications.


Part of what is making me so sad is that I'm trying so, so, so hard to be healthy and strong and to take positive control of my health, and I'm eating healthy food and exercising and taking calcium and vitamin D and all the it feels so grossly unfair.

Today I was listening to a Sheryl Crow song, "No one said it would be easy; but no one said it would be this hard." That about sums it up right now.

Don't get me wrong. Life is busy in mostly wonderful ways. I feel healthy and strong. Mostly, I feel optimistic. But today, I'm saddened by the news that my body has yet another challenge to deal with, and I feel overwhelmed by it. Tomorrow, my PollyAnna attitude can return...but today I'm tired.


Tuesday, September 05, 2006

Testing, testing, 1-2-3

The testing never stops. I need to go in for my regular MUGA (heart function), DEXA (bone density), bloodwork (CA 27.29, CA 125, TSH, etc.)...and now I will get the new BRCA (genetic) test that has just come out. Since male factor breast cancer is so rare, and tends to be BRCA2 related, and since breast cancer in a woman so young is so rare, it is highly suspected that I have a genetic mutation. Perhaps this test will find it.

I hope that I do NOT have such a mutation, of's too late for me but I'd like to believe that my aunts and cousins are not at a higher risk.

Stay tuned!

Myriad Introduces Enhanced BRACAnalysis® Test for Exceptionally High-Risk Breast Cancer Patients
New BART™ Technology Detects Rare DNA Rearrangements in BRCA1 and BRCA2 Genes

Salt Lake City, August 1, 2006—Myriad Genetics, Inc. (Nasdaq: MYGN) ( announced today the introduction of the BRACAnalysis® Rearrangement Test, a new molecular diagnostic test in the BRACAnalysis family of products. The added test detects rare, large rearrangements of the DNA in the BRCA1 and BRCA2 genes and will be performed for women with exceptionally high risk who have tested negative for sequence mutations and the common large rearrangements already included in Myriad's test.

BRACAnalysis, Myriad's test for hereditary breast and ovarian cancer incorporates the most thorough full-sequence analysis for gene mutation detection ever employed on a broad commercial scale. More recently, Myriad and others have discovered and published information on an additional type of mutation, known as a large rearrangement, that has not been detectable by commercial DNA sequencing technologies, but only by laborious, manual research-based methods. Such rearrangements are responsible for a small percentage of changes in the two breast cancer genes. In 2002, Myriad added a panel of five common rearrangements to its BRACAnalysis test, accounting for nearly half of the total occurrence of large rearrangements in the two genes. Because large rearrangements are quite rare, a woman meeting the commonly employed selection criteria for BRACAnalysis has less than one half of one percent (0.5%) risk of carrying one of the large rearrangement mutations.

Now, with its new BART technology for large rearrangement detection, Myriad offers an automated, robust test designed to detect all large rearrangement mutations in the BRCA1 and BRCA2 genes, even if they have not been seen previously. As of August 1, 2006, Myriad will conduct the BRACAnalysis Rearrangement Test on patient samples where the individual's personal and family history is indicative of an exceptionally high level of risk, but the sample tests negative for BRACAnalysis. The Rearrangement test will be performed, when indicated, at no additional charge, and is also available for order independently for a fee of $650.

"We are very pleased to introduce an exciting and robust technology to detect these rare rearrangement mutations," said Gregory Critchfield, MD, President of Myriad Genetic Laboratories, Inc. "This work continues Myriad's leadership in providing the best testing possible for individuals at risk for hereditary breast and ovarian cancer through our gold-standard BRACAnalysis product."

Saturday, September 02, 2006

A good reminder

This study should remind me to keep my weight low.... I'm glad I gave away all of my "big" clothes because it's important to me as a breast cancer survivor to keep that weight off. The statistics are particularly powerful if you consider that chemo only improved my chances by, perhaps, the improvement brought about by a healthy weight loss is particularly important and substantial.

I know it's only been a few months since I started maintaining my new, healthy weight, but I am DETERMINED to keep it off forever. You may quote me on that, and gently remind me that I am perfectly capable of doing so, should I ever start to slip. :-)

Tuesday, August 29, 2006

A survivor story from the 3-Day - 27 years!

At the end of the 3-Day, the survivors line up in pairs and march into the arena together after all the other walkers are already in for the closing ceremony. While we were watching the long stream of walkers go by us - 2300 people - the 400 survivors stood and talked about who they were, and how far out they were.

The woman behind me in the line was 27 years out; she's 69, and she was 32 when she was diagnosed. She didn't remember her staging, but she had a Halsted radical mastectomy and chemotherapy, so that tells us something. She had three small children at the time, and she told me that, like many of us, she just prayed that she would see them grow old.

When she was diagnosed she made herself a tape that she played for herself every night, in which she told herself the story of her future life, saying things like, "I will see my son graduate from high school. I will attend my daughter's wedding. I will rock my grandchildren to sleep." I don't know if this helped or not....but it made me think I might do the same thing (on CD!). I know that a positive attitude will not cure cancer (if it did I wouldn't have gotten it in the first place!) but it sounds very affirming and life-embracing to me.

She's a grandma now to SIX grandchildren; she has rocked them all to sleep. She didn't miss any graduations, nor weddings. She's still NED, and at 69 she was spry enough to walk 60 miles and smile at the end, offering encouragement to many of us.

There wasn't a dry eye around.

A survivor story from the 3-Day - 27 years!

At the end of the 3-Day, the survivors line up in pairs and march into the arena together after all the other walkers are already in for the closing ceremony. While we were watching the long stream of walkers go by us - 2300 people - the 400 survivors stood and talked about who they were, and how far out they were.

The woman behind me in the line was 27 years out; she's 69, and she was 32 when she was diagnosed. She didn't remember her staging, but she had a Halsted radical mastectomy and chemotherapy, so that tells us something. She had three small children at the time, and she told me that, like many of us, she just prayed that she would see them grow old.

When she was diagnosed she made herself a tape that she played for herself every night, in which she told herself the story of her future life, saying things like, "I will see my son graduate from high school. I will attend my daughter's wedding. I will rock my grandchildren to sleep." I don't know if this helped or not....but it made me think I might do the same thing (on CD!). I know that a positive attitude will not cure cancer (if it did I wouldn't have gotten it in the first place!) but it sounds very affirming and life-embracing to me.

She's a grandma now to SIX grandchildren; she has rocked them all to sleep. She didn't miss any graduations, nor weddings. She's still NED, and at 69 she was spry enough to walk 60 miles and smile at the end, offering encouragement to many of us.

There wasn't a dry eye around.

Monday, August 28, 2006

The Breast Cancer 3-Day: The first installment

Here is what I have started writing about the 3-Day. I missed so much information about the event in this telling, and there are funny stories to tell, and touching ones, and I need to add them....but here is a taste of my experiences at the 3-Day. More to follow!
I got home from the Seattle Breast Cancer 3-Day yesterday, and I am still on a high. Here are a few notes that I just can't resist sharing...

This event was INCREDIBLE for me. First of all, I had been using the 3-Day as a fantasy to get me through the most heinous parts of treatment for over a year. Sitting in chemo, burning from rads, and recovering from surgeries, I would close my eyes and envision crossing the finish line....strong and healthy enough to have walked 60 miles, with my hair ruffling in the breeze, surrounded by friends, proving that the cancer was BEHIND me. The event became the symbol of good health for me, and I sometimes wondered if I'd ever get there, if I'd ever actually be well enough to partake in it.

I was honored to walk with nine friends for the entire event: Michele, Lori, Susan, Carolyn, Molly, Darcy, Bryona, Katie, and Sara. Joining us on the last day as an honorary team member was my oncologist, Kristine (now officially one of the girls, not just my oncologist). Being surrounded by these friends, and spending three full days, including two nights of sleeping in tents just feet apart from one another, was the most incredible girl-bonding experience ever. Suddenly, we were all twelve years old, pulling practical jokes, laughing, singing, resting, eating, and talking talking talking talking. Our husbands and children were at home; there were no chores; no jobs; no email; no phones (except when we chose to call home on our cellphones to check in....and then we'd turn the phones off!). We were there to take care of ourselves, and of each other, and it was incredible.

The first day, after opening ceremonies, as all 2700 walkers were released, it was like one giant walker traffic jam, and things were slloooooowwwwwww... too slow for me. I found myself having something to prove, and I would have run if they'd let me (actually, during a 3-Day, you can get disqualified for running...."it's a walk, not a race!"). I had all kinds of energy, and I felt the full health of my fantasies, and I was practically giddy about it - I felt like I could FLY. When the crowds loosened up after the first pit stop, I started walking faster, and faster, until I was doing a walk just short of running. Every time I called out "On your left!" and passed someone, I felt a little surge of adreneline, and a happiness that seemed to fill my entire self. THIS was health. This was the fantasy come true.

I walked like a fool, but took my time at pit stops to visit with my friends (some walked with me, some came a bit slower), snacking on the billions of calories worth of food provided (string cheese, bagels with cream cheese, peanuts, bananas, oranges, pretzels, potato chips, granola bars and more) and refilling my water bottle (sports drinks were provided but I find them heinous and unnecessary). I arrived at camp with a smile a mile wide, and had plenty of time to shower (they have mobile showers), set up my tent, check out the camp, and hang out before dinner at 5pm.

The walk itself was just so FUN. People lined the streets to cheer, which shouldn't matter (it's about personal health and fundraising, which I had already accomplished) but the kindness of these strangers was INCREDIBLE. In addition to the pit stops every 3 miles, people stood at the sidelines handing out candy, or popsicles, or watermelon (my personal favorite!), or misting the walkers with spray bottles. People held signs saying, "Thank you" and "This survivor thanks you" and cheering for strangers and friends alike. Some people got REALLY into cheering, and dressed in silly costumes (mostly pink!), or set up stereos pumping out music, or they passed out little trinkets for the walkers to pin to their shirts or hats. Some of these self-appointed cheerers actually stationed themselves at multiple stations throughout the day, so that we would see them time and time again. (My favorites were Dan, Moose, and Bob: a father, grown son, and best friend, who clapped their hearts out for us, wore pink pompoms on their shoes, and treated every walker they saw like an angel. WOW.) I was also honored to be visited by Ryan, Tessa, Shep, and my mom and dad, which was wonderful: I was so glad to share some of this with them. Ryan held a sign "Go Team Kristina" up for us, and it felt good to hug each member of my family, and to feel their incredible support.

On the first day, I was just filled with so much energy that I practically (but not quite) ran the event, and it all passed in a blur. On the second day, I walked more with my team, or large parts of my team....and we found ourselves singing to pass the time. Yes, singing. It was crazy! I can't carry a tune but we found ourselves belting out songs from Grease and The Sound of Music and all kinds of other incredibly cheesy stuff. I think that we sounded particularly good on "My Girl" and "Lean on Me," but by then my standards were not particularly high....I was just so filled with love for my friends, and for the moment, that the craziness of it all filled me with happiness.

The first night, the entertainment was karaoke, which I wasn't into...but the second night, the entertainment was a local band called the Aphrodisiacs who play 70s cover tunes like "Celebration" and Earth, Wind and Fire tunes. I could not believe it, but after walking 40 miles over two days, and after hearing stories from one survivor and one co-survivor that had me shaking with emotional tears (God I hate this disease!!!)...I found myself dancing and singing along (this time, thankfully for everyone around me, I was drowned out by the music playing!).

The final day, with Kristine joining us, was tons of talking, and the team stayed all together. We were all happy to be getting done with the walk...but we were all a bit sad that it was ending, too. A girl-fest like this one doesn't happen often, and I could not believe how much fun each of us seemed to be having, despite blisters and various small ailments. I got to know Kristine as a friend, and we talked about everything under the sun, and she shared stories happy and sad about her experiences as a oncologist who works exclusively with breast cancer patients.

As we walked in to the end, we (all 11 of us, with other walkers sometimes joining in) sang "You've Got a Friend." I cried as I listened to my friends singing, and as I heard the words "You just call out my name, and you know whereever I am, I'll come running..." and thought about how they'd run to my side. I thought about telling Carolyn, who lives two states away from me, that I had cancer, and how she showed up at my door two days before my mastectomy. I thought about all of them, walking with

As we got into camp, I started to think that I didn't want to leave my team during closing ceremonies....they had been so instrumental in my experience that I didn't want to separate from them. Michele, upon hearing this, put her arm around me, and said, "You know that we are at your side on this journey, and throughout all of this. But you also know that there are some things that you have had to do all by yourself, that we can not help you with, and that you have been strong enough to do them. Now you will do this, and you will know that we are still at your back, even when we're not by your side." I wept....and agreed with her. It's a perfect metaphor.

While we were in the holding area, waiting to be called into the arena, Michele (who always knows the right thing to say!) asked me what the high point of the previous year had been. I flashed back through the entire year, the highs and lows, and it seemed like an hour before I could answer. My voice shaking, I knew I was telling the truth when I said, "Right now. Here, together. I made it!"

My friends entered the arena before me, in the long parade of walkers, and I huddled under a shady tent with the other survivors. The survivors, all in matching pink t-shirts for this final part, started talking partner was a five year survivor, I'm a one year survivor. As I mentioned in my other post, the woman behind me was a 27 year survivor, and we all cheered and hugged her. She asked me about my treatment, and she looked me in the eye and said, "You are going to make it. You will rock your grandbabies to sleep." I sobbed again, and held her tight in my arms for a moment. Funny, I never learned her name, but I will never forget that moment.

And then we marched into ceremonies. I wish I could tell you about them, but I don't remember most of them, because I was so lost in the emotion of it all, and in the realization that the event was over. I do know that I cried.

There are many other stories I could tell, and some of them are silly/stupid/goofy, and others are touching, but I will leave it here for now, as it's 11:06am and I must go to bed.

If you made it reading this far, thank you.

Tuesday, August 22, 2006

The face of breast cancer

A member of the YSC has been putting together this poster, and I'm on it (second row, third from left). It's still being constructed (more faces are being added, they're working on the verbage) but even incomplete I think it's very, very powerful.

Monday, August 21, 2006

Closing Ceremonies at the 3-Day

I know that this will be a major milestone for me, and I already know that I am going to cry for most of the closing ceremonies - tears of pride, success, fear, and uncertainty about the well as hope. This year has been an amazing journey, and more than my official one year anniversary, I am using this event as a way of closing the year. I would be deeply touched if any of you chose to attend the closing ceremonies with me.
Closing Ceremonies
Sunday, August 27
4:30 pm

University of Washington
Off Montlake Blvd. NE and NE 45th Street
Seattle, WA 98195
View maps: Entrance / Exit

Spectator Note: Friends, family and supporters should arrive to the Closing Ceremonies site at least one hour early to get the best view of the program. To witness the final victory walk of the 3-Day is truly an experience worth the wait. All walkers and crew members will remain in the Participant Holding area where they will receive their victory shirt, cheer on their fellow walkers and crew members, and reflect on their experience before the dramatic silent victory walk into Closing Ceremonies.

Driving Directions
From the north via I-5 southbound:
From I-5 southbound, take the NE 45th Street exit (#169). Turn left onto NE 45th Street. Continue east past the main entrance to the University of Washington at 17th Avenue NE and onto the viaduct. Near the bottom of the viaduct, move into the left lane. Continuing on NE 45th Street, move into the right lane. At the next traffic light (located at the 5-Corners intersection of NE 45th Street, NE 45th Place, and Mary Gates Memorial Drive) turn right onto Mary Gates Memorial Drive. Take the first right onto Clark Road. Proceed west to the NE entrance to the E1 parking lot.

TIP: to avoid traffic congestion use the NE entrance to E1 from Mary Gates Memorial Drive.

From the south via I-5 northbound:
From I-5 nouthbound, take the NE 45th Street exit (#169). Turn right onto NE 45th Street. Continue east past the main entrance to the University of Washington at 17th Avenue NE and onto the viaduct. Near the bottom of the viaduct, move into the left lane. As you continue east on NE 45th Street, move into the right lane. At the next traffic light (located at the 5-Corners intersection of NE 45th Street, NE 45th Place, and Mary Gates Memorial Drive) turn right onto Mary Gates Memorial Drive. Take the first right onto Clark Road. Proceed west to the NE entrance to the E1 parking lot.

From the east via State Route 520:
Coming from the east use State Route 520. Take the Montlake Boulevard exit. Continue north on Montlake Blvd. crossing the drawbridge and then travel past the Bank of America Arena and the Intramural Activities Center. Stay in the right-hand lane and continue north. When the road makes a "Y," bear right staying on Montlake Blvd. Take the next right onto Walla Walla Road. Straight ahead you will see a multi-lane northern entrance to the E1 lot.

TIP: To avoid traffic congestion use either the Walla Walla Rd. entrance to E1 or the entrance accessed from Mary Gates Memorial Drive.

Event Parking
Parking Lot E1 will be available for spectator parking.

Public Transportation
The University of Washington can also be accessed by bus. Visit for route and timetable information

Want to come cheer at the 3-Day?

Invite Your Friends and Family to Support You
Invite your friends and family to the Opening or Closing Ceremonies. They can also cheer you on at any of the following Cheering Stations. These are designated spots where it is safe for them to gather along the route.

Day One:

Mile Marker 7.9
8:45 am - 12:00 pm
Marina Beach Park
25 Lake Shore Plaza
Kirkland, WA 98033

Mile Marker 16.4
12:00 pm - 5:30 pm
Helen Keller Elementary
13820 108th NE
Kirkland, WA 98034

Day Two:

Mile Marker 7.9
9:00 am - 12:30 pm
Bank of America
14003 NE Woodinville Duvall
Woodinville, WA 98072

Mile Marker 12.7
11:00 am - 3:00 pm
Washington Mutual
18925 Bothell Way Northeast
Bothell, WA 98011

Day Three:

Mile Marker 6.6
8:15 am - 10:45 am
Northwest Kidney Center
14524 Bothell Way NE
Lake Forest Park, WA 98155

Mile Marker 13.2
11:20 am - 2:30 pm
Washington Mutual
5464 Sand Point Way Northeast
Seattle, WA 98105

Friday, August 18, 2006

I could get hit by a bus, too

This essay has a lot of truth to it, and so I thought I would share it here. The bolding is mine.

Copyright 1995 Susan Frisius

"You never know when you're going to die, after all, I could get hit by a bus."

Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.

"You're lucky you have a treatable disease."

Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can do," but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.

"You'll be fine because you have a great attitude."

If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?

"Don't worry, if your time's not up, it's not up."

If that's true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, "if my time's up," treatments won't help.

"I've read that anger and stress lead to cancer."

Great! Now I caused my own cancer.

"You should simplify your life."

It's pretty simple now, all I seem to do is go to medical appointments.

"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."

The person who tells me this knows I only eat natural foods, cook everything from scratch, don't eat junk foods and rarely eat meat.

"You eat white pasta," she says when she sees my puzzled look.

Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label I wouldn't now have cancer?

One person says, "If you really want to live, you will. Just never give up. When people give up, they die."

If I were hit and killed by a bus would she think I died because I gave up?

Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."

Most conversations end with "call if you need anything."

I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.

Why do intelligent and sensitive people who care about me say such things? Can they really believe I'm responsible both for my cancer and the outcome of my treatments?

I think these people want to believe cancers are caused by a person's poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."

I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."

I'm sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.

So what would help me while I'm being treated for cancer?

Drop in or call. The only way you'll know what I need is if you keep in touch. Remember, if I'm out in the community, I'm well enough to be out. It's when you don't see me that I need your support.

Don't wait for me or my immediate family to ask you for help. It takes too much energy and I don't like admitting I can no longer cope with everyday living. When you want to help, don't ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.

Don't minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I've held important has been touched by it - my ability to raise my children, my work, my independence, my social life.

Don't let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it's not my whole existence and I am able to converse on other subjects.

Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.

If I let you know your company is too much for me at the time, come back. If I don't answer the phone, call again. I need to know I can count on you because I'm temporarily unable to count on myself.

If you're feeling helpless because someone you know has cancer, don't. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.

Both of you will fell better when you take action.

Thursday, August 17, 2006

Bad dreams

Last night I dreamed that I went to the hospital for testing, and the scans all showed ten spots on my lungs. "I'm so sorry," the doctors said, "But it's advanced to stage IV." In my dream, I ran my fingers through my short hair, realizing that I would soon be bald. In my dream, I knew that my life would never be the same. In my dream, I was exhausted at the prospect of all I had to do.

I pray this was only a dream.

Thursday, August 10, 2006


Today I sent out a big email to friends and family...and I'm hoping that some others will come here and see it, and consider making a donation to the Breast Cancer 3-Day.

Friends and family,

It is no secret to any of you that I am walking the Breast Cancer 3-Day in a couple of weeks - I've been talking about it nonstop for some time now, getting ready emotionally and physically for the big event. Everything is almost in order: I have become physically able to walk that far (my first 20 mile walk was a resounding success), I have my lymphedema sleeve to war while walking so that my arm won't balloon up during the walk (yes, this is a treatment side effect), I have my amazing team of nine friends walking at my side, and, most importantly, together my team has raised $23,167.25 according to our team webpage
Team Kristina Page .
This is an amazing accomplishment, and one that we are all very, very proud of. The money goes primarily to research (through the Susan G. Komen and the National Philanthropic Trust), every dollar brings us one step closer to finding a cure. We aren't done yet, though, and hope to bring that number even higher.

Some things have changed since our team first decided to walk. The most depressing change is that the statistic "1 in 8 women will get breast cancer in their lifetime" is no longer true: now it's 1 in 7. Think of the women you know, and mull that over. Who will it be? Worst of all, I think of the children that I know. How many of them will it be? It's unbearable.

I have been sliced (five surgeries so far, five more to go), poisoned (16 chemo treatments), and burned (33 radiation treatments, resulting in third degree burns) in an effort to rid my body of this disease... but I am not asking you to donate for me. I'm asking you to donate because I absolutely can not BEAR the idea of these treatments applied to Tessa, or to any of our children. I am asking you to donate so that we can find a cure in our children's lifetime. I'm certain that it's possible, but it's going to take money to fund the research that will change things for the better. I have come through this treatment year a warrior woman, stronger than I ever guessed possible and supported by world class amazing doctors, and yet I still live in fear of recurrance and mets, and in fear of the women I care about being diagnosed. I have already had one knock at the door: my neighbor, who is my age and has a three year old, was diagnosed a couple of weeks ago, and she has stage IV breast cancer (in her liver and bones). Her pain is my pain, and it must be stopped.

The only thing I know how to do to make myself feel better is to fundraise to find a cure. We HAVE to find a cure. In the words of one of my survivor friends on the web, we must Kill the Beast.

This is the last email that I will send asking for your money for this event. I am truly grateful for any donation, small or large, as they all add up and DO make a difference.

You may donate by going to the website below:
Donate to Kristina's Breast Cancer 3-Day Efforts
and either donating online or printing a form to send in with a check.

Thank you for reading this, and for your donation.