Excitement

I am starting to get really, really excited for the 3-Day. We are building a team of the most amazing people, and I am so honored to walk with these women. The team will be a mix of people returning from last year ("Team Kristina" members), friends who couldn't walk last year but are up for the challenge this year, friends of some of the other team members, and new survivor friends.

Right now, it looks like we will have perhaps five survivors on the team. When I look in these women's eyes, I see myself. They remind me why we're doing this.

We are going to kick some serious cancer a$$. I know that I'll go through the "how on earth will we ever do this" phase, but right now I'm in the "hmmm maybe more than 20 people will walk, and maybe we'll raise more than $60K this year...maybe I should shoot for $100K!" phase.

One day at a time. I'm just so delighted that so many friends have expressed an interest in doing this with me. I can't wait for the little party tomorrow. :-)

Kristina

This week

Well, this week is going on at usual speed. Minor updates:

- Tessa has a cold. I've kept her from all kid-activities and the poor dear is dying to go hang out with her girlfriends...like mother like daughter on that one! Anyway, she's okay, but on Sunday she was up half of the night crying and coughing; nothing would soothe her. She's doing fine through the night now and it's settled into a "normal" cold; she is just coughing and sniffling during the day. No swimming lessons today because of that, and that makes her sad.

- I have committed to doing "I am the cure" with Komen. It was right for me. Twenty years from now, I'll look back at this time and know that I made a difference. The next six months will probably be crazy, but hey, it's me...so if it wasn't this, it would be something else! I know I'm spending my time on something valuable.

- Last night I went to a survivor's meeting at Gilda's Club, and I got a lot out of it. When I went over a year ago I just couldn't do it...other women's stories overwhelmed me. Now, I'm in a pretty good place, and hearing others actually helps me to deal with my own thoughts on recurrence etc. (Just so you know, that is ALWAYS in my head. I hear from other survivors that it will never go away. It's not a matter of having a good attitude, it's a matter of dealing with the facts, and being all too aware that recurrence is a regular part of this path for many women. I know several women in recurrence...it happens. The trick is to accept this possibility and not allow it to overwhelm me, and that's what talking about it does for me.) The women in the group are bright, articulate, brave, and strong, even when they are afraid. I will definitely go back. They meet monthly.

Tonight is my grandmother's 84th birthday party, and I'm looking forward to attending and celebrating her life with her and the rest of the family. Tomorrow is my wine, cheese and chocolate party (with the purpose of getting girlfriend time and talking about the 3-Day) and I'm looking forward to that quite a bit. But on that note...I'd better start cleaning my house. Time to run!

Love,
Kristina

Okay maybe I should still do Herceptin?!

I'm confused...obviously!

I spoke to our insurance company today. Apparently they are only covering 90% of all Herceptin fees since July (when we switched companies) and the bill reflects the amount that is out of pocket until we hit our $2200 annual deductable.

This means that we owe $2200 from last year and haven't received that bill. We will also owe $2200 this year because I've continued Herceptin, but also because I'm slated for 2-3 more surgeries, and that will easily make me hit my out of pocket. Even if I quit Herceptin, I'd hit the $2200 deductable (which, by the way, I have no idea how we're going to pay) this year, and quitting Herceptin now wouldn't change that.

So, the money isn't part of the equation. It is a royal pain, but it's not part of the decision making process for Herceptin.

I now suspect that I will continue Herceptin through September, as planned. "Leave no stone unturned" is my motto. I know too many people dealing with recurrances right now to forget the message.

Yes, I know it sounds like I'm indecisive...but it's my blog, and I'm thinking it through...just that I have an audience!

Kristina

Okay maybe I should still do Herceptin?!

Time to end Herceptin?

In addition to my falling MUGA, I got another nasty surprise last week: a bill for $800 for my last Herceptin treatment. It seems that my insurance may no longer pay for Herceptin; I need to call them on Monday to figure it out. The insurance statement was for $19,000 (which, you may be surprised to hear, doesn't mean much to me - I get statements like this all the time, at least once a month...I have accrued hundreds of thousands of dollars worth of treatment by now) and "only" $800 wasn't covered, but since it was covered at 100% before I wonder if my insurance company will no longer support my second year of Herceptin treatment.

Sigh. We can not afford $800 (or more!) every 3 weeks until September...not even close.

I am starting to feel like the universe is telling me that I've had enough Herceptin. 12 months is standard, and I've had 17 months. I hate to avoid any possible cures, but since this one is a big unknown (the study on one year vs two isn't finished) I just can't afford to cough up that kind of cash.

In better news, Genentech has approved my story and submitted it for FDA approval. I hope to get called to a speaking engagment soon.

And in other news, the local Komen office has asked me to chair a major new initiative that is slated to be a part of Race for the Cure. It would be a major time commitment for me, and involve a lot of responsibility. I am currently debating whether I can be a great mom and stay sane AND do the initiative. Only time will tell, and I'm going to go through a logical process (mapping out what the commitment would look like) to make the decision, but I am hoping and praying that I can make it work. It is an important initiative, proven successful in other markets, and I would like to be the one to make it successful in Seattle. It would be a way to bring powerful messages to thousands of women....and in doing so, it might save women's lives. I would like to tie my name to that kind of thing; I'd be proud to finish such an accomplishment. But I am also aware of how spread thin I am right now....so I need to think about it further. If you're praying for me, please pray that I will do the right thing for myself, for the cure, and for my family.

Love,
Kristina

CA 27.29 report; MUGA results

I forgot to report earlier:

CA 27.29 is a tumor marker in the blood that is elevated in the presence of breast cancer; when I was diagnosed it was at a 44 (40 and under is normal), and since my original surgery I've hovered around 17. It's currently (blood work last week) at 8. Good news! The marker is notoriously unreliable but trends can be important and I like this trend.

My MUGA (heart test) has dropped, however. Normal is above 50, and I've been at 64 since starting treatment. In the past three months my score dropped to 56, which is still in the normal range but a significant drop. I'll get retested in another 3 months. If my levels continue to drop I would need to consider discontinuing Herceptin, and I'm hoping that won't be the case, as I'm betting a lot on that drug and want to complete two years of it. However, the risk of low MUGA scores are heart attack and congestive heart failure, and I won't risk that if the numbers fall too far.

I guess I'll update in May!

More juggling

I haven't been on much because I've been too busy! Life continues at the same breakneck pace.

I have turned in my Genentech story and it's been approved at the first level; it's off to FDA approval next (because I will be speaking about a pharmaceutical, I need FDA approval of what I'm going to say). I have also turned in 20 pages of content for the Komen Race for the Cure website - the written content came from me (or I stole it from other Komen docs and fixed it up). I've got Tessa's friend Jessie here for 3 nights as her parents are in San Fran; Jessie is a fabulous kid and a joy to have around, but still, it's kept me busy. Ryan and I have been doing some yard projects, mostly maintenance we'd been putting off. And then there's the usual preschool, swimming lessons (Tessa has improved dramatically!), birthday parties (two this weekend), and the like. I'm struggling to lose two pounds - nothing to "worry" about but I'm also aware that pounds creep on one or two at a time, and so I have to get rid of them one or two at a time. Exercise is sporadic at best; I need to better learn how to fit it in. I'm fully expanded now, and awaiting surgery March 2 for the new implant and corrections on the other side.

February 22 - 3-Day Kick-off party at my house (Interested? Email me and I'll invite you!)March 2 - surgery
April 15 - Whidbey Island Half Marathon
April 19-29 Hawaii!
May 12 - Giant Yardsale Fundraiser
June 16 - Race for the Cure

It's going to be a busy spring!

Additionally, I've been asked by Komen to head up a new program called "I am the Cure" for the Race for the Cure. It's a fabulous opportunity...I just need to see if I have time to do it. I'm still trying to figure out how much work Genentech will offer, and I need to prioritize that because there is a financial stipend for Genentech but not Komen. And I haven't forgotten my goals as a stay at home mom, either. I think today we're going to go to the aquarium. :-)

See, I really am busy!

Now, off to take the girls and take the dog for a walk...

Love,
Kristina

Signing up for the 3-Day and Save the date!

If you wish to look at joining team Warrior Women, please check out:
http://www.the3day.org/seattle07/warriorwomen

And please save the date: Saturday, May 12 is the giant yard-sale fundraiser. More details to follow!

Juggling

I have a lot of balls up in the air right now: Komen, Genentech, motherhood, fitness/running/marathon, weight, Hawaii, surgery & follow up stuff for treatment, co-op preschool, friends, marriage, housework, and even the occassional need to sit down and take a breath.

Some days I manage this better than others. The last couple of days I've felt good about my progress: I have cleaned out our office -something that has been bothering me for A YEAR!, submitted my Genentech work and expense report, done a bunch of work for Komen, followed up on various commitments, stayed on plan for Weight Watchers (it's a lifestyle, not a diet....which means that to stay "lifetime" I have to do it for the rest of my life....which I had not been doing, so I gained a couple of pounds), etc. I am nowhere near caught up but I'm making progress, and progress feels GOOD!

Right now, Tessa is playing dress-up with Anna, the sun is shining, Shep is happy because I took him for a walk...and the world looks good. :-)

Juggle, juggle, juggle. I drop balls, but I'm trying to find the right rythem...

Kristina

A Mommy Moment

Yesterday, Tessa and I took a shower together. Usually I enjoy showers to myself, but Tessa had dipped her hair into my latte (grrr!) and both of us were in need of a quick scrub, so we popped in together to save time, instead of giving Tessa a full bath, which is as much playtime as anything else.

While in the shower, we were singing to pass the time. (Isn't that what people do in showers?) I started singing "So Far Away" by Carole King - I think I'd heard it on the radio a few minutes before getting into the shower.

I stood there, water cascading over us, Tessa in my arms, her head on my shoulder, as she enjoyed the warmth, and I sang, "You're just time away; long ago I reached for you and there you stood; holding you again would only do me good," and I came to the realization that this was a moment to never forget.

One day, perhaps twenty years from now, my daughter will live on her own, and would think that it was the height of weirdness to simply relax her naked body on mine to enjoy a shower together (and, at 24, I agree, that would be pretty weird...even assuming I was strong enough to lift her!). I realized that one day, I'd look back at the simple pleasures of being the mother of a young child, and I would yearn for the closeness of my sweet girl. One day, she'll be far away, and I will yearn for her, and I will remember the moment when all that mattered was the warm water and the relaxation of being together.

The moment passed; we quickly scrubbed our hair clean, got ready, and headed out into the day (and the beautiful sunshine - hurrah!). But I hope that I can carry that moment in my heart forever, and that I do remember it. For a moment in time, we had everything we needed, and all was well with the world.

Lovely.

I wish you such moments of living in the present, too, and I hope that I can remember mine more often.

Love,
Kristina

The 3-Day in 2007

I have offically signed up for The Breast Cancer 3-Day in Seattle, September 7-9, 2007. I am excited to begin my work on it, and hope that those who sponsored me last year will consider doing so again.

This year, the team is re-named Warrior Women. I have long imagined that my friends and family were an army supporting me as I fought the beast of breast cancer; my middle name, Louise, also means warrior woman. In short, the name just struck me as "right" and I hope that others like it, too. I loved being a part of Team Kristina last year, but this year, I wanted our name to be more inclusive of others, and not just about me. I'm hoping to have other survivors join the team, as well.

I also love the name because it fits with The Susan G. Komen Breast Cancer Foundation's new advertising campaign, aimed at young women:

When we get our hands on breast cancer, we're going to punch it, strangle it, kick it, spit on it, choke it and pummel it until it's good and dead. (Not just horror movie dead, but really, really dead.) And then we're going to tie a pink ribbon on it."

By the way, Komen is changing it's name to "Susan G. Komen for the Cure," and this is part of their re-branding. They're getting hip with the times!)

That sentiment makes me very, very happy. Pink is pretty, and so are we, but we are also fighters, and breast cancer is going DOWN! (
Interested in joining my team? I would love to have you. We will have a bigger team than last year, and we're going to have a wonderful time. Here's a link for joining us:
Join team Warrior Women at the 3-Day in 2007
If you are so inclined, you can also click on my name and make a donation. I can't wait to get started with this!

With love,
Kristina

All fired up!

This morning I attended the Susan G. Komen Breast Cancer Foundation (now renamed Susan G. Komen for the Cure) Annual Meeting. It was fabulous to be around others committed to ending breast cancer, but here's the most exciting part:

One of the presenters was Dr. Dwight Randal, a truly brilliant guy who is on Komen's board. He talked about the work that one of his colleagues is doing to train the body to attack cancer, because the immune system doesn't work for cancer because the body sees the cancer as "self" and treats cancerous cells as "self" instead of as a foriegn body.

Well, to make a long story short, this doctor has a theory that if cells are retrained to see cancer as a foriegn body, the immune system will attack them.

The first patient started the first phase of the trial six weeks ago. She's dubbed "patient 001." Well, 001 is a late stage IV patient who has tried multiple therapies, including multiple cutting edge therapies, but nothing has worked, and the mass inside her chest is so large that scans can't see through it. The way Dr. Randal talked about it, she was lying on her deathbed. So, she tried this very new, very experimental therapy.

The result? Three weeks later, she was home. Her tumor shrunk 92% in that time. 92%!!!!!! I have never met this woman, but I could have cried from happiness with that number. Now it's six weeks later, and she's doing well; she'll have anther set of scans soon, but she feels good and she's at home.

Is this the cure? Or at least the cure for some part of the disease? We're a long way from knowing that. Patient 002 is starting the trial today, perhaps as I write this. Will her results be as good? Only time will tell. Here's what I know, though: good works are happening. We will find a cure, this one or another one. And Komen for the Cure is funding this kind of research. I am proud to affilliate myself with them, and proud to spend my time for them.

Kristina

Four birthdays!

Tessa's Birth Day

Happy Birthday, Tessa!

Today my tiny baby girl is four years old. I can hardly believe it! I thought I'd walk down memory lane by posting the story of her birth here...and of course I have to include pictures.

Tessa Katherine, I adore you. The best thing in my life is being your mommy. Happy birthday, sweetheart!
-------------------
Tessa Katherine Surface’s Birth Story

The week leading up to the birth….
On Wednesday, January 15th, I went to the hospital for my standard weekly prenatal checkup, expecting to hear the usual things about my pregnancy – usual, in this case, being “everything’s fine!” However, instead I received the distressing news that my blood pressure was too high at 140/90, and that because I’d gained four pounds in the previous week and was retaining water, AND because I was now showing trace amounts of protein in my urine, I was diagnosed with PIH (Pregnancy Induced Hypertension, a.k.a. toxemia or pre-eclampsia). With this unfortunate diagnosis, I was sent home to immediate bed rest until the baby was to be delivered. What a shock! As always, but more than ever, I was extremely grateful that Ryan was with me to hold my hand and to take care of me. The good news was that I was 2 centimeters dilated, with 70% effacement, and that TessaBenjamin was in the –1 position, and those things meant that my Bishop score was over 10, and so the doctor thought that we were likely to deliver “soon,” so it was my hope that I’d go into labor on my own and not need to be on bed rest for long.

Doctor Hutchison made us an appointment for Triage at Swedish for that Saturday, just to make sure that things were okay, and we were told to have our bags packed “just in case.” We rescheduled our Wednesday appointment the next week to Tuesday, and Dr. H told us as well that if we hadn’t had the baby already, we would be induced on Thursday the 23rd. All of this was quite a shock – the pregnancy had progressed so wonderfully normally until then – but of course we were willing to go along with our doctor’s advice, since we understood the seriousness of PIH.

That Friday, I started seeing spots, and so when I called the doctor’s office they told me to come in right away. I asked if Ryan could come home to get me, and they told me that he should just meet me at the office (which, of course, he did). Fortunately, the appointment was relatively uneventful….although they told me that it looked like I was in early labor! The non-stress test showed that our baby’s heartbeat was looking good, and it also showed that I was having mild contractions every 2.5 to 3 minutes. I had felt contractions like these for a couple of weeks, though, so I didn’t believe for a minute that I was actually in labor. It turns out I was right!

On Saturday, we went to triage as scheduled, and the contractions had stopped, my blood pressure was relatively stable (still high but not at a dangerous level), and so they sent us home – without our baby, still pregnant, and still on bed rest.

On Tuesday, we went to the doctor again, and found that we were 3cm dilated and 75-80% effaced. Finally, we asked the nitty-gritty about delivery with PIH. The news was scarier than we’d expected. We were told that I would probably have to receive magnesium sulfate in an IV to prevent seizures and stroke during labor – and the words “seizure” and “stroke” were terrifying. We were also told that it was very likely that I would need to have an epidural, as one of the side effects of an epidural is lowered blood pressure, and also because Pitocen induced labors are often more painful than naturally progressing labors. This was scary to me, because my reading told me that the epidural does make it into the baby’s system, and that babies can often be slower as a result of it in the first few weeks, and this often causes problems with breast feeding. Less scary, but also disappointing, was the fact that I would still be officially on bed rest, so I wouldn’t be allowed to walk around, to labor in a squatting position, or to have the mobility that I’d hoped for. Since those were some of the primary ways I’d intended to manage my pain, I was nervous that they were being taken away from me. However, we were determined to do whatever it took to have a happy, healthy baby, and the excitement that we felt over our baby’s arrival was greater even than our fears.

On Wednesday night, Ryan and I watched “our” movie, which is When Harry Met Sally. (It’s our movie because our relationship parallels theirs in many ways – friends for a long time, then “more than friends,” then struggling to even remain friends….and then true love!) We snuggled on the couch downstairs and talked with each other….it was a great way to spend our last night as a couple before becoming a family.

At about 2am, I was still wide awake and thinking about the events that were sure to follow. I whispered “Are you awake?” and Ryan replied that he was, too. It was impossible to sleep with such an exciting and scary event right around the corner.

Birth Day: January 23, 2003
The hospital called us at 7:30am promptly to let us know that we should come in at 8:30am. This was it – for real! We made a few phone calls to let people (Mom & Dad S., Mom & Dad D., Susan, and Libby) know that the show was on, and then we went to the hospital. When we got to the hospital, we were assigned to a room, and to our nurse, Merllie (who was fabulous!). Merllie hooked us up to monitors and got us settled, and she began a Pitocen drip at about 9:20am. The contractions were present already when she started the drip, and they got stronger with the Pitocen, but I knew that they must have to get a lot stronger to really have an impact, because they didn’t hurt much at all and I was still able to talk through them. When Susan and Libby showed up a while later, Ryan and I were reading from a book (“Notes from an Italian Garden,” which was a gift from Keith & Noel) and feeling relaxed, although excited. My blood pressure looked good, and they decided that they didn’t need to start any magnesium sulfate – what a relief! I was still stuck in bed for the most part, but I was allowed to use the birth ball and the tub, so that was nice.

At about 1:10, the doctor came and performed AROM (Artificial Rupture of Membranes – she broke my bag of waters). It’s at that point that the contractions REALLY started. I found that if I closed my eyes and just blocked out everything else, it was much easier for me to deal with the contractions. I tried several other methods of dealing with them, too – including imagery (I imagined that I was a dolphin, riding up the crest of a wave) and breathing techniques (at first, slow, deep breaths were good, but after a while I used a combination of short breaths followed by a long breath in a he he he he ho pattern). The best thing of all, though, was Ryan – he kept me focused and held my hand, and he did the breathing with me. Susan and Libby hung out in the back, offering Ryan support (which he was extremely grateful for). At first, in between contractions I was able to chat and visit with them – the contractions were intense, but when they were over, they were OVER! I have to admit, I’m proud of the way that I handled the pain. I think that by giving myself positive messages, and by employing the breathing techniques and visualization techniques, I was very successful at managing my pain and my fear. By about 3pm, though, the contractions were so intense that in between I needed to just rest and couldn’t talk much, and sometimes I didn’t even open my eyes between them. I also used the birth ball, with Ryan standing behind me to support me and to keep me breathing. (We have a picture of us in this position.)

At about 3pm, I asked to get into the tub. For reasons I still don’t understand, they filled the tub, drained it, then filled it again! Since the tub was marked “sanitized” I didn’t understand that at all…and it was highly irritating because at that point I felt that I needed a new method of pain management and waiting was incredibly difficult. Anyway, I didn’t get into the tub until about 3:30pm. Just prior to getting into the tub, I was examined and found to be between 5-6cm, and so I thought I probably had a long time to wait before TessaBenjamin would make an appearance.

The tub was bliss! The warm water felt so incredibly good, and I felt that the pressure of the contractions was cut in half by the weightlessness that the deep water offered. Ryan sat behind me, in his swim trunks, hands on my shoulders, and I thought that I could hang out like that for a few hours without complaint. How quickly things change, though! I had about two contractions, and on the third contraction I felt an unbelievable urge to push. I held back because I knew that I wasn’t ready and I didn’t want to bruise my cervix by pushing too soon, but I yelped to the nurse to tell me what to do. They got me out of the tub (and at this point, I should add, modesty had flown OUT the window! I was stark naked, and I didn’t care – all I cared about were the contractions), Ryan dried me off, and I staggered into bed. I was scared at that point – the contractions had been building steadily all afternoon but suddenly at this point they went off the charts for pain, and I hadn’t had time to catch up to that feeling, and I wasn’t managing my pain well.

The contractions seemed to me like they were coming one right on top of the next, and to top it all off I got cold, and then I started shaking (particularly in my legs). The nurse tried to examine me, and the intensity of the contraction made the examination feel absolutely horrid. However, it was worth the exam – she informed me that the reason I felt a need to push was that I had already gone through transition, I was 9-10 cm, and fully ready to push! This was exciting news, but also a bit shocking. Mostly, I felt relieved to hear it because I knew that I couldn’t handle hours more of the pain at that level, and knowing that I was fully dilated made me understand that the reason it had gotten so much more intense was because I was making incredible progress.

At this point, lying on my back started to be painful beyond words. My body BEGGED to be in a standing position, or squatting, and I cried out to the staff to let me get off my back, but they wouldn’t allow it. They had me go on my side, or on my back, and I remember whimpering and moaning because the pain was so intense. At that point I remember asking the nurse Mary (who was also in the room) how long the pushing phase was likely to last, and she said, “Oh, up to three hours.” At this, I wanted to cry, because I genuinely felt that I simply could not last three more hours at that level of intensity – it wasn’t just that I was tired (I actually felt like I had energy still) it was that my body seemed to have a mind of its own and the pain was absolutely unmanageable and made it so that I felt like I couldn’t control my body. She told me that pushing would probably feel like a relief, though, and less painful, which was good news.

Unfortunately, pushing was NOT less painful for me. I felt like I was being scraped with a cheese grater all down the birth canal, and it was very difficult for me to push because my natural instinct in response to the pain was to hold back and fight pushing. I remember holding on to the bedrails and panting and moving my head from side to side, desperate to find some relief and anxious to feel the relief that pushing was supposed to bring. At one point, I heard myself making a lot of noise and I actually had enough presence of mind to open my eyes and say, “Oh my God, I’m a moaner!” which cracked the room up. Soon after that, Ryan said, “If you want to call me bad names and yell at me that’s okay…” and I remember looking at him and saying, “What? I’m not mad at you – I love you!” I think he was relieved but still not sure I wasn’t ready to kill him for putting me in that situation….but I have to say that I never, not for one second, lost focus that this was something I wanted, and I never felt anything but closeness toward Ryan during the labor.

I had written into my birth plan that I did not want an episiotomy, and Dr. Hutchison was marvelous about working with me on that point. She took mineral oil and massaged me, working my body to help ease the baby out. Libby saw this and commented afterwards what an incredible professional Dr. H is – and I have to agree. Interestingly, though, I did get one cut – my hymen! Dr. H said that mine was particularly tough and stubborn, and so it was impeding the baby’s progress. How incredibly odd – I thought that the hymen was usually broken when a girl lost her virginity….and I assure you that this was NOT a virgin birth!

Despite these small moments of levity, pushing was horrific work, and at one point I panted “I can’t!” I didn’t mean “I won’t….” I really meant that I just didn’t know how to summon the strength to keep going. At that point, Dr. Hutchison told me to reach down and touch my baby. I will never forget the silky soft feeling of her hair as she crowned – it was like I believed, for the first time, that it was REAL and that I was really going to have a baby! Her head felt so soft, and I could feel the silken hair, and suddenly everything became much more tangible, and I was able to give a couple of good pushes.

Despite my concentration on my own body, at one point I could feel the atmosphere in the room change, and I heard someone say that the baby’s heartbeat was at or below 80 beats per minute. I knew that a healthy heartbeat would be over 120, and so this was quite frightening. Suddenly, everything started happening at once, and Dr. H order forceps and vacuum extractors. I wasn’t keen on the idea of having my baby forcibly removed from me (and I knew that these tools are tough on babies and often really tear moms, as well) but my fear of the tools was doubled by the fact that I knew that Dr. H’s request for them stemmed from an immediate, severe problem. Dr. H spoke to me very clearly, saying, “Kristina, look me in the eye. Look at me! We need to get this baby out now. Do you understand me?” I did understand, all too well – I knew that my baby (and possibly me, because of the blood pressure issues) was in trouble and that thought was terrifying. However, it gave me strength to do what was needed – and I pushed like I’d never pushed before. The pain was hideous, and when I tore I felt it happen. I felt something protruding inside me, and I remember asking “Is that its nose?!” because I couldn’t figure out why I felt so scraped from the roundness of a head. Well, almost as soon as I could ask, the head popped out – and following it, almost in the same motion, the hand popped out, too, like it was waving! I didn’t see this, but I certainly felt it (and I must say, I think it was the most painful part of the whole thing – I’m informed that it was incredibly cool to witness, but it’s the part of the birth I would change!). I heard Ryan exclaiming about the head and hand, and before I knew it the body came out all at once, at 4:08pm

I really wanted Ryan to be the one to tell me if it was a boy or a girl, and everyone in the room knew that they were to keep mum on the gender until Ryan could tell me. Soooo, no one said anything, and I looked right at Ryan immediately after I felt the baby exit my body, and I saw him choke out “Tessa!” in a barely audible voice. At that point, he burst into tears of relief and joy – seeing his daughter being born was pretty emotional, and fearing for both of our lives at the end only compounded that. The funny thing was, nobody else heard Ryan say it but me, and so they all said, “Tell her! Tell her!” and he had to repeat himself, but I’d already heard.

Tessa was quickly suctioned and placed on my chest. She was so incredibly perfect – her wide eyes looked startled at her introduction to the world, and she gave a beautiful, strong cry to let us know that she was okay. We held her tiny, perfect hands and snuggled her close, so grateful that she had arrived. And….now I can confess it. I would have been happy with a boy, and I certainly would have loved Benjamin – but in my heart of hearts, I always wanted a girl. I was so incredibly delighted that my precious child was a girl that it was like a present – and I was just stunned with complete delight. This joy was heightened by the fact that Ryan had always known that we would have a Tessa – and that made me feel like he had a special connection to his daughter right from the beginning.

After a moment of snuggling and adoration, the nurses took Tessa to clean her up and make sure that she was okay, and Dr. Hutchison started to stitch me up. (I’m no martyr, and I had written into my birth plan that I DID want drugs if I had to be stitched – thank goodness! Dr. H told me that I had about 20 stitches, and even with the drugs I felt quite a bit. After childbirth, I could handle most things, but even so it wasn’t particularly pleasant and I just kept waiting for it to end.) As I was being stitched, proud daddy Ryan snuggled with his newly swaddled baby girl, and then Libby and Susan got to hold her. It wasn’t until then that I realized that Ryan was still in his swim trunks – everything happened so quickly after I got out of the tub that there was absolutely no time for him to do more than to put on a t-shirt! Ryan loves to tell the story that when Tessa was born, he was wearing damp swim trunks and had bare feet….but he didn’t mind.

When I was stitched, Tessa was handed back to me, and she began nursing like a champ. Looking down at my breast, seeing that little face intently focused on her dinner, was – and still is – pretty amazing. Her latch was strong, and she was so alert – it was really love at first sight, but the love grows exponentially.

All in all, my labor and birthing experience was incredibly positive. Ryan was the most incredible labor coach, and I absolutely felt the love and support of not only him but also of the two dear friends who were there to support us (Susan and Libby). I feel grateful that I was able to have the birth without the use of magnesium sulfate, and that my body was cooperative. Most of all, I'm grateful that Tessa was born healthy (Apgars of 9 and 9), and that our family feels so beautifully complete. Really, I may be the luckiest woman alive!

Leaving YSC

I have spent a lot of my time since finding the lump on the YSC (Young Survival Coalition) website, chatting on a bulletin board with other young women with breast cancer.

Today, it occurred to me that I must not go back.

Part of it is because there is usually not much that is new - I'm one of the "old" girls on it, and I've already been through chemo etc so I don't have questions about that any more. Part of it is because it scares me to see "friends" progress to stage four (yes, another one today). Part of it is because it keeps me in Cancerland, and I'm trying to get the next plane out of Cancerland. Part of it is that I'm too busy with the work I'm doing on breast cancer causes, instead of working on my own breast cancer beast.

So, I've deleted it from my favorites list. No lurking, nothing. It's time to channel that energy into my work for Komen and Genentech.

I hope that this is a good new phase.

Harumph

Today, filled with good spirits and energy, I started the day by heading to the hospital to do another Herceptin treatment and to get another expansion at the plastic surgeon's office, in addition to having my pre-op appointment with the plastic surgeon (next on the calendar: March 2; breast corrections on the existing implant, and removing the expander and replacing it with an implant on the other side).

I am so filled with energy and enthusiasm after my conference that I wanted to forget some of the day to day realities, but today they hit me.

The Herceptin infusion was fine, though I do have to schedule another MUGA (heart test) for next week to make sure it's not toxic. But the expansion....OUCH! I got another 60ccs injected into the expander, and it feels like I have a vice on my chest, or that I've just been punched in the chest, or that maybe I just got hit in the chest by a flying boulder, or something like that. The pressure and pain are beyond "uncomfortable" and into that zone where it's hard to think because the pain is distracting. I took a Vicodan, and it's not helping. My PS prescribed more Vicodan, and though I hate to take it (can't drive, have a harder time concentrating) I have to confess that it's hard to function without it. Right now, I'm STILL in pain, even though I had the VIcodan an hour ago and it should have taken effect by now.

ARGHHHHHHHH! I am so tired of this garbage.

I'm looking at the future, though. I bought a bikini to wear in Hawaii, and by then I will have two breasts, hopefully symmetrical ones. I won't have nipples, but nobody but Ryan will know (see) that. I have some major range of motion issues right now because of leftover issues from surgery and radiation, and the PS thinks that she can correct them by cutting through some of the tight scar tissue that is restraining me. I have elected to get my port out on March 2nd, as well, despite the fact that I continue to use it for Herceptin. I'm tired of Tessa's head bonking into it (it hurts!), and I'm tired of the bump under my skin. I'm tired of the reminder that it was placed there for chemo. I will get future Herceptin treatments through a regular IV. Today the nurses looked at my veins, and they said they've recovered, and IV will be fine.

Progress is being made. Mostly, I feel great. I'm just mad that I don't have the strength today to carry grocery bags, and that was on my list; I'm also mad that I don't have the capacity to work on some of my more intellectual pursuits because the d*** pain is so distracting.

By Hawaii, things will be better. That is my mantra!

"Mommy, stop talking!"

Yesterday, Tessa and I dropped in on our neighbor Mira and her son briefly so that I could tell Mira about the conference, and try to share some of the inspiration that the stage IV women (in particular) gave me. Mira and I were talking about breast cancer, which isn't particularly unusual given our situations, and we were being very positive about it since both the kids were listening.

Tessa got very rude, insisting "I want to go home!" "Stop talking!" "BE QUIET!" and whining and complaining and interrupting. We really didn't talk for very long, so I was quite disconcerted by Tessa's rudeness; she has trouble with interrupting but in general I find her to be a polite child, and this was over the top and I was feeling quite frustrated with her.

When we walked home, I started asking her questions.
"Tessa, does it bother you when I start talking about breast cancer?"
"Yes."

"How do you feel when I talk about breast cancer?"
"Sad."

"Do you feel angry?"
"Yes."
"Why?"
"Because I feel sad and angry and I don't like breast cancer."

"Are you worried about anything?"
"Yes."
"Can you tell me about it?"
"I don't like breast cancer. I don't like chemotherapy. I don't like it when you're sick. It makes me feel sad."

"Are you worried it's going to come back?"
"Yes."

And there you have it. This is the truncated version of events, hitting the major points. Of course I tried to talk further abou it further with her, offering reassurances and assuring her that her feelings were okay and that she could talk to me about it; trying to let her have these horrible emotions and to acknowledge her feelings, while at the same time reassuring her that I will probably be okay and that the doctors take good care of me and I did SO much work to make sure that the cancer doesn't come back. She listened, asked just a few questions, and then changed the subject. When I gently tried to ask her more questions, she changed the subject again. She is sick to death of breast cancer. Not quite four years old, and she's an expert on cancer treatment. THIS makes me sad and angry.

But she's smart. And she knows that "probably" isn't a guarantee, and it frightens her. All she knows how to do is yell "Stop talking!" and hope that it will go away.

I need to walk the line between encouraging her to be in touch with her feelings, and allowing her some peace from breast cancer conversations. I'm not at all sure how to do that, but I'm trying. I need to reassure her that I will be well, without lying; I can't make promises. I wish more than anything that I could promise her to stay well.

I held her tight, cradling her in my lap like a baby. I told her that I loved her 100 times.

I need to show her, every day, my good health and that I am well. And I need to pray that I stay that way.

Love,
K

Inspiring Women

(Note: I don't have an update for my online aquaintance, whose message I posted below. She hasn't posted since then.)

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On Sunday night I returned home from the conference in San Francisco. I am completely inspired, and so grateful to have had the opportunity to become part of such a dynamic group of intelligent, articulate, courageous, inspirational women. The conference was wonderful on more levels than I can count, and I know that I am fortunate to have the opportunity to participate in this program from the beginning.

First of all, the conference organizers put us all up at The Ritz-Carlton in downtown San Francisco. The Ritz lived up to its name - their customer service is absolutely exceptional, and the hotel is lovely. (All of us were talking about how well we slept in their incredible beds - feather duvets and plush pillows; I love my bed at home but this was amazing and I wish I could have fit it in my suitcase!) My room had a little view through the buildings downtown out to the Bay, and every little detail was thought out. We worked really hard at the conference, and our time was accounted for from 7:30am to 10pm, but at the end of the day it was bliss to have some solitude in my room and to enjoy the ambience of the hotel. I never could have stayed at such a decadent hotel if it wasn't all comped, and I had fun with it.

Second, the conference organization was superb. I get really irritated at disorganization, and sometimes I went to teaching conferences that were so freeform that I felt like my time was being wasted or that I wasn't sure what my objectives were, but this conference was brilliantly planned and executed, and every minute felt valuable. The speakers were articulate, and the activities we did were structured enough to give us a strong sense of purpose while still allowing us to have creative input.

And then there's a food. I won't tell you how much I ate, only that I got up at 5:45am to hit the hotel treadmill...otherwise I might not have been able to zip my pants. :-)

But these things are just fluff, compared to the real work that was accomplished. I feel filled with a sense of purpose, and I am certain that many, many people will be helped through the work that was accomplished over the weekend.

The gist of the program that I am participating in is that I will be available to tell my story - of my life, including but not limited to my breast cancer experience - to women who are newly diagnosed with her2+ breast cancer, and that in doing so, I can offer hope. By sharing the fact that I am a person, first and foremost, with dreams and aspirations and fears and desires, I can send the message to women that their cancer does not define them. Second, by sharing some of my cancer experiences - some of which were better than expected, and some of which were darker than I could have imagined - I believe that I will show women that they are not alone. Third, and this is most important, I will be able to show what a face on the other side of the diagnosis can look like. I'm healthy, and I look it. I can show women that after a cancer diagnosis, they can be filled with hope for a long life, that they can be fit and active, that they can be filled with life and energy and passion. If I can do it, they can, too. Herceptin is part of, but not all, this message of hope. Herceptin makes me hopeful that I will live a long life, but it is not the whole story, and fortunately I do not need to spend all of my time talking about the drug.

My personal highlights of the conference:
1. I was so inspired by the women of the conference. There were 27 women like myself, and I often felt awed by their presence. Initially, I thought that everyone I met was "like me" - that is, early stage. I was wrong. It seemed like MOST of the women I spoke with were stage IV, and their energy, zest, passion, and laughter brought happy tears to my eyes. Some of the women have been recurrance free for years (One was told that she had about two months left to live when she was diagnosed with stage IV during her pregnancy with her second child; the doctors told her to terminate. Instead, she had the baby....and that was nine years ago, and she's still cancer free!); others have been in continuous treatment for years (one woman hadn't taken a break for nine years, if I understood her correctly). Disease free or still fighting, though, their intelligence, humor, courage and passion overwhelmed me. For the first time...and this was a major breakthrough for me...I felt that if I was diagnosed with a recurrance of stage IV, I would be able to accept it and still go on to live a long life. For the first time, I understood that such a diagnosis might be beatable. I could have wept from the relief of it. We all know that many women die...but this reminded me that some women LIVE, and they don't just survive, they thrive, despite it all. This is the biggest gift that the conference could have given me, and was (I believe) a very unintended side effect that I will be eternally grateful for.

2. I received another gift, of a different type. The conference included a one day writing workshop to craft our stories and create presentations for sharing in the future, and I received some beautiful compliments on my writing abilities. One of the professional writers, assigned to work with me, said, "I feel underqualified to critique your writing, as you are obviously such a fantastic writer that I am not sure what to tell you," and this compliment made my heart sing. I have aspirations of being a "real" writer, and that he assumed that I already was, well, it lifted my spirits more than I can say. Maybe I really AM a writer! Who knows what would happen if I ever took more than a half hour to write something, and then actually edited it. ;-)

3. Carolyn! Since Carolyn lives in the Bay area, when the conference was over she came to meet me on Sunday and we spent a half day together. BLISS!

I am told that, if I desire it, I will be kept VERY busy with this work. In addition to calls to work with the media (giving an interview, etc.), I may be asked to attend luncheons with oncologists to share my experiences as a patient, or I may be asked to attend sales meeting functions to share my experiences with the drug. However, the primary goal of this program is that I will reach out to other patients, newly diagnosed with her2+ breast cancer. Conferences are being set up, and I would be a speaker at such conferences.

We will see where this takes me!

In other news...
I have bitten off more than I can chew. Wait, that's not news, that's normal, but this time I've bitten off even more than usual. In the past two months, I have committed to the following:
1. Working with Genentech in a Patient Ambassador capacity, possibly traveling with some regularity, and giving presentations or speeches. This includes doing writing, and I have a final copy of a 3000 word essay due next week.
2. Working with the Komen Foundation to write all of the content for the Puget Sound affilliate Race for the Cure website. This includes interviewing about 15 race participants, team captains, corporate sponsors, survivors, co-survivors, etc. and then writing their stories for publication on the website; it also includes writing all of the race information (welcome messages, FAQs, registration information, etc.). The website needs to be up in March; I haven't really started this work yet.
3. Chairperson at the preschool co-op. This involves a few meetings per month, one of which I lead.
4. Running a 1/2 marathon April 15, and a full marathon October 7. I have a lot of training to do to make that happen!
5. Surgery (implant exchange and corrections) on March 2.
6. Continued follow up care; Herceptin every 3 weeks, oncology appointments, scans, tests, etc. I should be going to PT twice a week because I'm losing mobility on my left side again but I can't find time!
7. Hawaii April 19-29. This is GREAT and I look forward to it immensely, thinking about it more times a day than I can count and smiling as a result....but how on earth am I going to be ready with items 1-6 before I leave?!

Then, of course, there's my regular life; housework, budgeting, grocery shopping, errands. And my number one priority is still Tessa: I only have 1.5 years left at home with her before she's a full time student in kindergarten, and I intend to make use of those years. Cancer stole a year from us as I was a distracted, sick, tired mother, and I'm determined to make the most of the time we have together. I believe that I can accomplish these other goals without compromising my time with her (utilizing the time she's in preschool, or working in the evenings) but I'm still concerned that I give her the type of undistracted attention she needs. And I'd also like to be a good wife and partner/friend to Ryan: we need downtime together, too!

Phew. I feel tired just thinking of it all! However, I need to get to some of these things right now; instead of thinking about them I need to DO them. Forgive me if I don't blog as much as I want to, but it's too crazy around here to find the time as frequently as I wish.

With love,
Kristina