Kristina's New Haircut

Today Tessa and I got our hair cut. Tessa's was just a trim, but I decided to do something unusual since I'll probably only have this cut for about 3 weeks before I lose all my hair to chemo. I went with bangs - something I haven't done since I was about 21 years old!

My stylist, Krista at Salon Ef-fekts (just a couple of blocks from our house), is fabulous. She really talked about what a fun time we'll have as I grow out my hair after chemo, and all the short styles I'll be able to experiment with....she made me feel like this was going to be fun. I know that there will be heartache when I lose my hair (which she has agreed to shave my head on short notice when I call her - apparently it hurts when the hair starts to fall out so I'll know when it's time) but I loved her attitude of "wow we'll have all kinds of opportunities to try out different styles and you will look so cute!" This is the kind of person I need in my life. I feel that she will probably cry with me when my head is shaved, and I will need that, too.

Love,
Kristina

A quick hello

Hi, everyone. This must be quick because we have a busy day planned - this morning Tessa and I will be getting our hair cut together (my last "real" cut for a long time so I might get bangs or do something crazy!), then we'll be preparing for a BBQ at our house. Fortunately, Michele helped me to go shopping (Costco) yesterday to get the main stuff for the BBQ, but I want to declutter our house etc before people come because with the weather the way it is now, I think it's possible that this will be an indoor event. Oh well!

My spirits are certainly better than last time I posted. My incisions hurt (there are two right now - one on the jugular vein where they inserted a tube to connect to the port, and one on my chest where they inserted the port-a-cath; both req'd stitches and actually the neck/jugular one is the more painful of the two) but it's bearable and I'm trying to go ahead with the business of living every moment. On Wednesday, Michele treated me to that heavenly Nordstrom Spa experience, and then yesterday Lori followed up by treating me to a spa pedicure at my local place...I should be VERY relaxed!

I haven't mentioned all of the incredible meals we've had lately. I need to get these recipes, ladies! :-) We have enjoyed some very tender porkchops in a herb crust (thank you Marilyn & Dan), very flavorful pasta with a pureed tomato and spinach sauce (thank you Lynn & Jon), great baked chicken with tomato sauce and cheese (thank you Scott & Karen), lovely chicken lasagna (thank you Jennifer & Parks), home-made soup and all kinds of accompaniments - including flowers! (thank you Sara), and last night's great Thai curry (thank you Julie & Barry). In my old life each of you would have received a hand written thank you note and I hate that I'm not able to do that right now, but let me just say, publically, how much I adore all of you and how much I've appreciated these meals. (Let me also say that I'm certain to have missed someone here and I'm horribly embarrassed by that idea...please know that we ARE grateful!) My parents also brought food from Metropolitan Market that we have feasted on.

Well, an hour 'til the haircut begins and we're all in our PJs so I must go. Thinking of you - I'll update again before the weekend ends.

Kristina

Home from the hospital

Today was rotten. I hated it. It sucked. But now I'm home and things are looking up.

To sum up: My expectations were not set correctly for this procedure, and it was a bigger deal than I thought it would be (wearing a hospital gown, being wheeled around in a bed, full medical history AGAIN, etc....I thought it would be more like getting a cavity filled....stupid me!). But the bad part is that the people (doctors) who treated me today treated me like a machine, were disrespectful to me, did not honor my request to explain what they were doing, and made the whole thing really frightening. I had a drape three inches from my face so I couldn't see anything, and several times (perhaps accidentally) they leaned their hands on my throat, making it difficult for me to breathe. When I said, "Your hands are on my throat - it's hard to breathe" they commented back words like "Oh." This happened multiple times. At some point, the doctor left (without speaking to me about it) and turned things over to an assistant. At one point he came back and asked her questions ("Did you remember to.....did you place this...." which made me feel like she was a total novice using my body for experimentation. Nobody ever asked me how I was (I was wide awake and fully coherent for all fo this), and it was horrible. At one point I started to be able to feel the procedure fully - think knives and needles - and they said "well I guess we'll give you more medicine." Oh, and to top it all off, I somehow got overmedicated and started seeing spots that looked like bugs running across the drape, which startled me to say the least, and when I said that they laughed and said it was no big deal. Yeah, well, it was a big deal to ME.

To top it all off my blood pressure fell in the middle of things, as did my pulse, and so I had to stay a couple of extra hours in recovery when I just wanted to LEAVE.

I am a person. I am a person with breast cancer. I am full of fears. I have to visit members of the medical establishment several times per week most weeks. I am at the beginning of a long road, and I know that. I need to feel cared for by the medical profession. I need to believe that they understand that I am a woman filled with hopes and dreams, that I am deserving of respect, that I feel both physical and emotional pain. I need them to understand that I can hear them when they talk about me five feet away from me, and that I do not appreciate being treated like I am not in the room. I need to believe that the next year and a half of treatment will be full of compassion, and the idea that I could be treated like this again makes me weep.

And that is my downer of a day.
Kristina

PS Something good about today.... I had told Ryan that today was "no big deal" and not to come. He used what he called his "husband radar" and left work mid-day and arrived shortly after I'd been wheeled into recovery. I cried the second he walked in the room....I needed him, and there he was, like magic. My husband is a VERY good man.

PPS - editing to add this - I LOVE my "real" docs at Swedish - my surgeon, Dr. Dawson, is amazing, and I already feel a strong connection to my oncologist, Dr. Rinn. Today was with a "random" doctor that I'd never met before, and I will probably not meet anyone from his team again until it's time to remove the port. Swedish is fabulous in general, but this is one bad experience. Dr. Dawson has asked me to put it in writing so that she can share it "with the appropriate individuals" and I think that they will get a good talking to. Their behavior was unacceptable, and Dr. D agrees with that. Monday's surgery is with Dr. Dawson, and I feel very safe in her hands.

It's port-a-cath day

It's 5:30 in the morning and I just can't sleep any more....I had weird dreams last night about surgery and hospitals and all kinds of crazy stuff. I have been living in denial (hey denial works sometimes!) for a while but today is a reminder that I'm on the edge of doing a whole lot of things that I don't want to do. I think, maybe, that having a mastectomy might have been the easy part, and the real work is about to begin. You can guess how I might feel about that.

Kristina

A quiet day to rest and reflect

Yesterday I was incredibly busy doing Tessa activities (the park in the morning with PEPS, then a "pool party" with children Elliott, Noah, and Daven and their accompanying parents in our backyard post-nap) and in between I did chores, chores and more chores.

Some of you may have heard me say that I couldn't keep up with the phone calls in that first month. Well, we got proof of that when our cell phone bill came in at $475!!!! We both nearly had a heart attack. Yesterday I spent some time on the phone with a very sympathetic Verizon representative, who changed our cell program and back-dated it, which brought our bill to $100. Thank you, nice Verizon lady! It's little things like this which are a side effect of having breast cancer....we have not paid attention to "unimportant" things like how many cell minutes we've used, and so they get hopelessly messed up, but then, through the kindness of a stranger, we are able to come ahead. This appears to be a cycle....I am also reminded of how horrible our yard was looking, and then our friends came and made it prettier than it looked before I got breast cancer. Silver linings, right?

Today will be quieter than yesterday. This morning Tessa and I will seek a playdate (if you're reading this and interested, give us a call!) or maybe we'll go to the Delridge mini-gym for her to run around. Mid-day, Caley is coming to help out, and then this afternoon Michele is treating me to a blissful spa experience. Dave gave Michele a Nordstrom spa gift certificate for her first Mother's Day present, and, bless her heart, she is sharing it with me. This brings tears of gratitude and friendship to my eyes - like every new mom, Michele has earned the spa experience, and the gift is special because of the event it commemorates. Michele would not heed my protestations (they might have been a little weak, I confess!) and today we will go together to be rich pampered ladies. I can hardly wait!

This evening, Ryan and I are squeezing in a date (Caley will stay late to watch Tessa). Between the whole disaster that is breast cancer, including my fatigue, and the stresses of Ryan's job right now, we haven't had a chance to be calm together and just focus on "us" very much, and we can both use this. I adore my husband and it will be good to simply relax together without distractions.

Tomorrow I will go in for my port-a-cath placement, which is really a small surgery (the incision is about 2-2.5 inches, I think), and then I will have a consultation with my surgeon, Dr. Dawson. The "big" surgery date (Monday) ever draws closer. Tomorrow I don't know if I will be able to update here, as I'll be on drugs from the surgery, but I don't think that this is something any of you need to worry about, as it's a pretty standard procedure. At the YSC meeting two women showed me their port-a-cath scars and it was very comforting - again, my imagination appears worse than the reality.

Ryan and Tessa are upstairs watching Lance Armstrong in a tough mountain stage of the Tour, and they are happily cheering for Lance together. The house is relatively clean after my work yesterday, and the day is good.

With love to all,
Kristina

Tuesday

This morning, after a case of the toddler tantrums, Tessa and I finally had a lovely time at the "tot lot" (a playground designed especially for toddlers) with our PEPS friends. Four of the seven PEPS moms are pregnant and I'm having a lot of fun hearing about their pregnancies and experiencing them vicariously. I really enjoyed being pregnant, for the most part, and it's fun to relive those moments. Right now I have seven pregnant friends (Natasha, Krystal, Shannon, Lynn, Heather, Susie, Linda) and it's fun to watch their burgeoning bellies and to dream about their children. I am delighted to share in their lives, and it gives me happiness to think of the babies that are soon to come. In particular, I'm excited to meet my newest nephew, Joshua Peter. It is a great reminder in our family that, despite cancer and chaos, life goes on and there is a great deal of joy in the world. Joshua will be born around August 25th and you may be certain that I'll be telling my doctors to work my schedule around his birth....I wouldn't miss seeing him at the hospital when he's fresh and new for all the world.

It's also, however, surreal to be surrounded by the beauty of pregnancy and new life when my own body is falling apart. My friends are breastfeeding, and I am having my breasts removed. My friends are the ESSENCE of fertility, and I am about to have my ovaries removed. These women are the epitome of health and vibrancy, and I'm about to lose my hair, toss my cookies, lose toenails and fingernails, have a suppressed immune system, be covered with surgical scars, and see doctors more than I see my own parents. It hardly seems possible that this could be happening to me. I'm not complaining, exactly, I'm just trying to say that it is surreal. It does not feel like this is MY life...surely, there has been some mistake? Only three years ago I was the vibrant pregnant lady, glowing with love for the child growing inside me, and so full of optimism. I don't miss being pregnant, and indeed we're totally happy with our little family....but it's a tough juxtaposition of my ill health against all this vibrancy.

Last night I went to the Young Suvivor's Coalition meeting in Seattle. I met a number of women who are either in or recently out of treatment, all of whom are 40 years or younger. Their positive attitudes, intelligent questions, and humor were amazing to me. I intend to return to their meetings, as it was a very positive experience for me.

Today I'm unusually tired. Last night I dreamed that the cancer had metastasized into my bones and that I was dying very soon (within days). This is not a subject worthy of discussion, I'm sure it's just my brain trying to process information, but it did not make for restful sleep. I can (mostly) control my fears in the light, but when I sleep they sneak in on me, unbidden, and wreak havoc with my sanity.

I'm sorry that this update is so dark...that was not my intention. Generally, I am doing well, I'm just tired today and I think that's impacting my attitude. I'll have a happier update later today or tomorrow.

Love,
Kristina

This made me cry

Link to The Survivor Movie

I wept when I saw the image of someone going into the MRI tube - one of my darkest moments so far; I also wept for the juxtaposition of that image against so many images of joy (mothers and children, etc.).

"I have cancer, but cancer does not have me."
Kristina

Fundraising - please help!

Here is an email that we are about to send out to friends and family. We are posting it here as well in the hopes of reaching as many people as possible.

Thank you for considering a donation to the LAF. Let's kick cancer's butt! :-)
Kristina

To donate, go to my personal fundraising page:
Ryan's LAF Page



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As Kristina has mentioned on the blog, we (Ryan and Kristina) are committed to doing some major fundraising for cancer research. Within the next year, there are two major events that we plan to complete: Ryan will do the Portland ride for the Lance Armstrong foundation (what this email is about), and then in summer of 2006, Kristina will do a three day, sixty mile walk for the Susan G. Komen foundation.

Please consider digging deeply to support either or both of these causes. We have chosen to support the Lance Armstrong foundation for many reasons:
1) The Lance Amrstrong Foundation has donated millions of dollars to cancer research.
2) Lance is an incredible inspiration to all cancer survivors. He beat incredible odds, and his story gives Kristina great comfort and strength.
3) Cycling is Ryan's passion, and this is a good way to put that passion to use.

Please consider this: 1 in 8 women will be diagnosed with breast cancer in her lifetime. That is simply too many. Everyone we know has been touched by cancer in some way: either through experiencing it themselves, or by loving someone who has had cancer. This miserable disease can be cured, but it takes money to find a cure. In the past decades we've made incredible strides, and survival rates are so much better than they were...but we have a long way to go.

Please consider making a generous donation to the Lance Armstrong Foundation to help find a cure. Please also consider forwarding this message to your friends and asking them to donate, too. We are at the beginning of our journey, and we have a lot to learn, but we know this: we can make a difference. Thank you for being a part of that difference. Let's find a cure!

With Love,
Ryan and Kristina
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More information below:

Join me in supporting the Lance Armstrong Foundation (LAF) to help people with cancer live strong!

Along with other cyclists, cancer survivors and their loved ones, I am raising funds and awareness for the LAF and Oregon Health & Science University (OHSU) Cancer Institute to help people with cancer live strong. Together, we will celebrate our efforts at the LIVESTRONG Ride Portland on September 25, 2005.

Funds raised through the LIVESTRONG Ride will support the LAF's advocacy, education, public health and research programs. In addition, a portion of the funds raised through the LIVESTRONG Ride will support cancer survivorship activities at the OHSU Cancer Institute.

Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the LAF believes that in the battle with cancer, unity is strength, knowledge is power and attitude is everything. From the moment of diagnosis, the LAF provides the practical information and tools people with cancer need to live strong.

Every dollar makes a difference in helping countless cancer survivors around the world. Thank you for your support.

Live strong!
Ryan

To donate, go to my personal fundraising page:
http://livestrongride.livestrong.org/siteapps/personalpage/ShowPage.aspx?c=fpLNJPOrHmE&b=744261&sid=rmL0LbOXKkK3JoPcF

Ryan Surface

Birthday Party Extravaganza

What are we up to, you might ask? Well, this is the weekend of The Birthday Party: An entire weekend dedicated to children's parties. This is not a bad thing.... I like cake and potato chips, and Tessa's friends' parents are our friends, so it all works out! Yesterday was Jackson's (5) and Carter's (2) joint birthday party; today are India's (3) and Daven's (2) parties. If we have any party left in us, we will attend Marisa's summertime BBQ (no birthday there, but a party for the heck of it).

When I start thinking of it, this is actually a fabulous way to spend a weekend. Lots of friends, lots of laughter, lots of joy. Those are all things that I can use in abundance these days, and I am soaking them up.

In between birthday parties, we've been doing all kinds of random things. Yesterday Linda & Gary had their annual yard sale, and we dumped off a bunch of our things and actually made $45. Hurrah - that's an easy bit of cash! When we got home from the yard sale, Bill, Marisa, Steve, and Jer were doing yardwork for us. Our yard has never looked so wonderful - between the work of this weekend's crew and the work of the crew (Susan, Lori, Michele) the weekend before, our yard looks fabulous. Next weekend we will have a little BBQ ourselves, just to revel in the Seattle sunshine (IF things go according to plan!), to enjoy the yard, and to share friendship. But I digress.... Yesterday the yard crew stayed to lunch (simple fare) in the back yard, and we soaked up the sun and enjoyed ourselves and the company of friends and family. Tessa even got some bonding time with cousin Jer, which we think is really special (They don't get to see each other that much, and since Jer is much older than Tessa we are eternally grateful that he shows an interest in her. Tessa, of course, instantly fell in love with Jer!). This morning we went out to bagels and coffee locally, then went downtown to the aquarium (where we mostly spent time at the tidepool exhibit...ironic, since we live walking distance from tidepools at the beach!) and then for two rounds on the carousel horses. (This is nirvana for Tessa - carousel horses and tidepools rank among her most favorite things.) After that, we ran some errands downtown, including picking up my lovely new Nordstrom "altered" bras that make me feel feminine and attractive - lucky me! And now Tessa is pretending (not very skillfully) to nap, and we're waiting to begin the next round of parties.

We are still dining on the incredible chicken lasagna that Jennifer, Parks and Clare delivered - it will be a miracle if I don't put on 10 pounds from eating all the lovely food that people have provided. Thank you.

This almost feels like a pre-cancer weekend....except, of course, that nobody volunteered to do our yard work before! I guess that means that in some ways, this weekend is even better, right? We are enjoying our break and trying to gather energy for the tough days to come. The waiting is hard, despite the fact that we are happy in general and feel grateful for so much. At night my brain spins and I think about horrible things, statistics that I wish I'd never seen, and all of the "what if's." I will be glad to be in chemo because then I will feel like I'm taking strides against this disease. I want to make sure that there is not one little cancer cell left in me, because it only takes one cell to mess the whole thing up. Those are the thoughts that keep me up at night...

But I am strong and determined, with fabulous doctors. Fight, fight, fight!

With love,
Kristina