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.)

--------
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

Oh dear God not another one!

From a YSC acquaintance:
--------
sorry to leave ya'll hanging...no go for tykerb, billirubin was too high...saw oncologist today, billirubin is still going up....it's at 23....he sounds like i might have a week, i'm due for doxil on monday, but he's not sure it's doing much good for me...my husband asked to try xeloda again, he said he wasn't sure how much dose he could give with my liver so bad....he said he's still trying cause i had originally told him in the beginning to never give up...whatever, i wish he would think of something miraculous....

i'm sorry i haven't taken the calls, but i felt all cried out and didn't want to cry anymore....but i cried a plenty today.....now i've got to tell my kids something....something.....poor little sara did tell me that if she couldn't see me anymore could she always stare at my pictures....okay, there i go again....tired of crying....love ya'll

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I pray that this is wrong, that I'm reading this wrong, that "might have a week" turns into decades. This is so unfair.

I hate cancer.

An exciting 2007

I keep meaning to blog more often; there are so many things that I'd like to say, and so many updates that I'd like to give...and yet life often gets in the way and I am so busy all the time that time passes without my getting to the computer.

Here is a short attempt to catch up:

My single New Year's Resolution is to be more patient with Tessa. I find myself barking at her, or giving a time out, too often, and I am determined to check myself and to be more understanding of her wants and desires. Included in this resolution is the promise to spend more active 1:1 time with Tessa. Of course, she and I are together almost all the time, but often we are doing different things when we're together; I'm chatting with another mom as she plays with her friend, or I'm making dinner while she's doing art, or I'm cleaning up breakfast as she's playing. I'm trying to read to her more often, really play with her at the park, and get down on my hands and knees to make puzzles, play Polly Pocket, play a board game, etc. This is my number one priority for the year. Time has already been stolen from us, with over a year of cancer treatment, and I'm determined to make the most of our time together. Tessa will never remember if the laundry was caught up, but she will remember that her mother played with her.

2007 has started with a bang, and many exciting opportunities are on the horizon. It is my goal -different than a resolution, I think - to run a marathon in 2007, and so I'm training toward that goal. I plan to do the Whidbey Island Half Marathon in April, right before we go to Hawaii, and to have a bikini-ready body for Hawaii. (Wahooooo!) "The big event" is the Portland Marathon on October 7, 2007....if only I could travel again right after that! LOL

My breast cancer life has changed quite significantly in the past year, and it's not just the length of my hair that I'm talking about. Last year, there were dozens of appointments each month, and I felt so terrible that every moment was taken up with breast cancer. This year, my personal fight has turned into a public one, and I'm fighting the beast in other ways. I have three main "breast cancer" events in 2007:

- The Breast Cancer 3-Day. We have assembled a team of more than a dozen women, and I'm so excited to do this event again. Last year we raised $32,000 - I hope to raise $60,000 next year. It CAN be done, and I'm looking forward to it!

- Working actively with The Komen Foundation. I am getting quite involved with the local office (the Puget Sound affiliate of the Susan G. Komen Breast Cancer Foundation), and I'm on the committee for Race for the Cure. (It is my primary responsibility to write web content for the race.) I am also talking to the local Komen CEO about a speakers' bureau and participating in such.

- (This just in!) Today I spoke with a representative of Genentech, and I am officially signed up as a Patient Advocate. As such, my responsibilities would include public speaking, media opportunities, and possibly educational or promotional videos, all to promote breast cancer awareness and Herceptin. Genentech is the manufacturer of Herceptin, a drug which I have been taking since last September. Herceptin is perhaps THE biggest breakthrough in breast cancer research, and promises to cut my risk of recurrence by 52%, and so I am quite comfortable in promoting it. As Genentech is a for-profit corporation, I feel no need to work for them for free, so I will be paid an "honorarium" for my services to compensate me for my time. I'm excited to speak out for the cause, and I'm also excited to bring in some income for our family - we will see where this takes us. I will be working only occassionally, sometimes doing a telephone interview from home, and occassionally traveling within the northwest to do speaking engagements. My first activity is a training weekend in San Francisco next weekend, and I'll get paid for that. I hope that this is the begining of a very productive relationship between Genentech and myself...so we will see!

With that, I will close, as I am tired and the slopes of the Cascades (snowshoeing and sledding) call for tomorrow morning, weather permitting. It is mostly a good life that I lead, despite it all.

Love,
Kristina

the new spam

This is the kind of thing I have the pleasure (not) of reading regularly. The statistics are particularly dreary; making it worse is that I've received this letter three times already.
-----------------------------
Dear Friend of the Young Survival Coalition,

As the holiday season is upon us, I find myself reflecting on my seven years with the YSC. I am so proud of what the YSC has achieved on behalf of the more than 11,000 young women who are diagnosed yearly with breast cancer. As a young breast cancer survivor myself, I have experienced firsthand just how much the YSC gives to young women diagnosed with the disease.

However, no matter how in awe I am of the gifts we give to young women diagnosed with breast cancer – hope, peer support and a home – I am always struck by how much more we as an organization need to do.

This fall, a long time friend, colleague and founding member of the YSC called, letting me know that after eight years of being ‘cancer free,’ she had been diagnosed with advanced breast cancer. The cancer had spread to her bones. This happened just two years after giving birth to her beautiful daughter, a miracle in so many ways.

That same week, another one of our close friends and constituents, Dona, a 44-year-old African American mother of three who, upon her return from a wonderful vacation in Puerto Rico, learned that her cancer, already in her liver and bones, had now progressed….now it was in her lungs…after being stable for four years, her body had become resistant to her treatment. Dona is trying to get past the fear that this may be her last Christmas with her husband and three sons...

To listen to the stories of both of these women, and countless others, and know they are experiencing breast cancer yet again, even after all the YSC has done for so many, is not only heart wrenching, it is unacceptable. And, it means that, while all of us in the breast cancer community and within the YSC have done SO much, we have SO much more to do.

The facts:

More than 11,000 young women will be diagnosed with breast cancer
Close to 1,400 of these young women will die
Only 50% of women diagnosed under the age of 40 will live 10 years past their initial diagnosis
There is NOT enough research done on young women diagnosed with breast cancer
These facts are haunting and inspiring at the same time, as they inspire us and drive the need for the YSC to continue to work passionately and ferociously to fight this disease; to provide young women with needed resources; and work with researchers to find out WHY young women are diagnosed with breast cancer.

And, it is this drive that has allowed the YSC to achieve more in 2006 than we have since our inception. Just a few of these accomplishments include:

Impacting the lives of more than 2,000 young women diagnosed with breast cancer who have found the answers to their questions and the peer support they need through the YSC’s ResourceLink – our premier peer support program.
Receiving more than 40 million hits on www.youngsurvival.org, the first place a young woman turns when diagnosed and the face of the organization. Since its inception in 1999, the YSC’s website has received more than 1 billion hits.
Launching a new program for young women living with advanced breast cancer including a monthly telephone support group as well as an educational video for young women diagnosed with metastatic breast cancer helping to decrease the sense of isolation a young woman feels when diagnosed with advanced breast cancer.
Continuing to co-host the largest international patient advocacy conference for young women diagnosed with breast cancer where 700+ attendees can network with each other, learn about the newest research and know that they are NOT alone.
Our eight affiliates continue to bring the mission of the YSC to their local communities decreasing isolation and building a much needed community.
Your support and your gifts make all of this possible.

There is not a day that goes by that I don’t think of the women we here at the YSC serve, and not just because I am a 10-year survivor diagnosed at the age of 27, but because they are truly my heroes and my inspiration.

I hope you will help the YSC continue to give the gift of hope and peer support to these women this holiday season by making a gift today. Your gift will truly make a difference, and will help young women attend our annual conference; provide them with informational resources – books, educational videos and fact sheets; and most importantly provide them with knowledge that they are not alone.

You can easily make your donation by visiting www.youngsurvival.org/donate or calling us at (646) 257-3000, and we will be more than happy to assist you over the phone.

I know that all the young women we work with will not just be appreciative of your gift and your thinking of them this holiday season, they will be delighted! It will be the best holiday gift they have ever received.

But, please make your gift today, before another young woman is diagnosed with breast cancer.

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.

Love,
Kristina

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' pool...it'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, wine....it 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!
Love,
Kristina

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.

Love,
Kristina

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.

Kristina

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:
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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.

Kristina

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!

Love,
Kristina

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!

Love,
Kristina

*NED = No Evidence of Disease

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

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 www.komen.org , but breastcancer.org is very informative and they do good work too.
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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 breastcancer.org 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 breastcancer.org 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.



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-- In place of a $100 department store gift card, a $100 gift helps breastcancer.org 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 breastcancer.org 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:

http://www.breastcancer.org/dh.html



Our very best holiday wishes to you and yours.



Most sincerely,



Marisa C. Weiss,

President and Founder, breastcancer.org



Hope Wohl,

CEO, breastcancer.org

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.
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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?
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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)...one day stage II, the next, stage IV.

Ugh.

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!

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.

Kristina
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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 concentrate...my 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.

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!

Kristina

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 picture....so 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...!

Love,
Kristina

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...!)

Love,
Kristina

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 removed...so 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!

Love,
Kristina

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

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!!!

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???