A few moments to sit still

This morning, after restless night-time sleep, all three of us slept in, rising at the oh-so-late hour of 8am. It's funny how a child can change one's perception of "sleeping in" - there were days before she came in that nothing prior to 10am would have been perceived as a late morning!

Anyway, when we got ourselves together, we decided to go on a train ride together ("One with a whistle, Mommy!") at the Snoqualmie Railroad. The ride is only 75 minutes and perfect for little children, and we even found a coupon in the Entertainment Book. We packed a picnic, left early, and enjoyed our picnic at a cute little city park next to the train depot, under the shade of a lovely gazebo and surrounded by flowers. Then we took the scenic, slow train ride, enjoyed ourselves, and returned home. Tessa fell asleep in the car and didn't mind being transferred to her bed, and Ryan is using the opportunity to rest as well. I should be resting, but I'm enjoying the stolen moments of quiet in the house.

I think that my greatest regret about my life in general is (besides breast cancer, of course!) that there are simply not enough hours in the day to do all the things I'd like to do. It's my own fault that my life is this way - today, for example, we could have spent a quiet day at home, but I won't hear of it when there is an adventure to be had. I'm constantly organizing some small social event, visiting a friend, answering or making a phone call, or coming up with some idea about what Ryan, Tessa and I could do for fun, and this is how I like things - it makes me feel alive to live in this way. However, the down side is that there is little room for quiet contemplation, and, believe it or not, I do like that, too. It wasn't SO long ago that I could lose myself in the Sunday New York Times, or read a novel from cover to cover without falling asleep (I still read as much as I can but I do tend to conk out midway these days), or take time to write in a journal. I do, of course, update here daily, but as you can see these are usually not thoughtful or thought-provoking posts, but more lists of things that are going on in my life. I miss having the time to reflect more often, or to record the analysis in addition to the facts (or, for you English teachers out there....what I write here is too much concrete detail and not enough commentary!). This is a statement of fact, not really a complaint, however. I choose to live my life in the way I choose to live it. Life with a two year old...and breast cancer...allows less time for analysis by nature, and I accept that. I do look forward to the days when I can spend time in true, deep thought again, though, and the few moments that I can do so these days are precious.

In these moments of reflection, I keep asking myself where I am in the process of dealing with my cancer. As with death, in serious illness there is a cycle of grief that starts with denial and ends with acceptance (I can't remember all the in between steps, but anger is certainly one of them). I don't feel much anger - I am not an angry person in general, and I don't find anger a useful emotion most of the time. But do I accept cancer? I struggle with the word acceptance, and that tells me that I have not, indeed, accepted my illness entirely. I would accept an award given to me for something well done - to me, that implies that I agree with the decision to grant the award and I embrace it being given to me. I do not feel this way about cancer in the slightest - I'm willing to dump it off at the earliest possible opportunity. But, in many ways, I'm accepting what is happening. I don't cry and rage because right now, I don't feel a need to. I'm too busy living, fighting, and (honestly) seeing progress against my disease to spend much time focusing on the frustrations of the disease. I worry that in six months, when this is old, old news but I'm still facing further treatment, further surgery, and further pain, that my anger will hit me then, but we will see.

My treatment plan is a long one:
May 25, 2005: Found a breast lump
May 26, 2005: General practitioner concurred that yes, there was a lump, and referred me to a mammogram
May 27, 2005: Two mammograms and an ultrasound are highly suspicious
May 31, 2005: Biopsies (3)
June 1, 2005: Diagnosis: Infiltrating Ductal Carcinoma
June 13, 2005: Mastectomy (11 days til drains removed)
July 14, 2005: Portacath placement (surgery)
July 18, 2005: Ancillary Node Dissection (8 days til drains removed)
July 27, 2005: First chemo, Adriamycin/Cytoxan (biweekly, 4 cycles)
August 6, 2005: Head shaving (hair started falling out day before)
September 21, 2005: First chemo, Taxol (weekly, 12 weeks), plus Herceptin (weekly, 52 weeks)
December 7, 2005: expected last date for chemo (20 weeks total)
Radiation: unknown at this time, but 6 weeks if we do it, January 2006
February 2006: removal of ovaries or hysterectomy and ovaries
September 21, 2006: Last Herceptin treatment (weekly IV)
Late Fall 2006: reconstructive surgery; often requires multiple surgeries; will remove right breast and reconstruct it at the same time
2009: Expected date for my hair to be as long as it was before chemotherapy
Early 2006 to early 2011: Hormone therapy, an aramatase inhibitor like Femara (oral)

There is a lot to think about in this list, and the most obvious thing is that I am barely on the on-ramp in terms of the freeway that is my treatment. I think I'm relatively accepting about where I'm at, and that feels good most days, but the truth is that I have a long, long road ahead of me. I will go through menopause at the age of 36, and I will still be on some "major" drugs when Tessa is in the second grade.

Breast cancer, in this way, changes everything. I can not believe how blythely, how assuredly, how confidently I was charging ahead in the day to day of my existance when this hit me from sideways. I really never thought a minute about getting sick, beyond that I wished avoid colds because they keep Tessa and I in quarantine from other kids and moms, and that the stomach flu was "the worst" because I'm phobic about throwing up. It really never occurred to me in any real ways that I could get sick in the truest sense of the world, and it certainly never occurred to me that it would impact my family as deeply as it has. If I could go back, I would not change this one bit. I would change my level of appreciation for my life, but I would keep my naivete. Being naive isn't exactly the same as being ignorant (I knew on an intellectual level that things could change - that is why I did breast self exams to begin with - so I wasn't ignorant of anything but the future) but naivete, I am here to report, is bliss.

I miss the simplicity of the "before" - and there will always be a "before" and "after" when it comes to my diagnosis. I think that if I live to be 100, I will never forget how I felt before June 1, 2005, and how I felt afterwards. I will never be able to go back, because now I truly understand both the wonder and joy in my beautiful life (for it is beautiful, to me) but also some of the depths of the sorrow. I understand now that life is a spider-web, beautiful, intricate, stronger that it looks - but infinitely fragile, as well. I understand this on a gut level now, and not just an intellectual one. I do not wish this understanding on anyone.

Another thing that I miss about the "before" is that I was the person helping others. I have always enjoyed making a friend a meal, or sending a cheerful card, or giving a phone call, or having the play date at my house, or inviting friends to dinner or a BBQ. These days, I am the recipient of so much incredible kindness, and I am not often able to reciprocate. I miss the feeling of helpfulness of the "before." Like Tessa, I very much want to say, "NO! I want to do it BY MYSELF!" Of course, I am intensely grateful for the help we've received - indeed, I think that we would have collapsed a thousand times without it - but I'm sad that I am not the person to help others right now. It doesn't help me at this time to know that one day, again, I will be helping others, because right now, and for the foreseeable future, my ability to lend a hand is severely limited, and that is just the way it is, and it's hard.

What other random musings have I wanted to share, and not been able to?

Here's one. The other day, I ran into our old neighbors two days in a row. On the first day, I was wearing my wig. On the second day, only my bandana. Our old friend, a lovely woman, came to me, hugged me, and said, "Kristina, what are you going through?" Bluntness is the only way I knew how to answer, so I told the truth in three words, "Chemotherapy. Breast cancer." She hugged me tighter, told me that she'd pray for me, and told me about a family member that was dying from his own ailments right then...she said it had been a rough year for their family. In the middle of a resturant, I was humbled, because sometimes (and this is embarrassing to say), in the middle of the catastrophe that has been our last few months, I forget that I am not the only one who has had suffering, and that the world has gone on, with not only the joy I usually see, but also with great suffering. I had forgotten how lucky I am - there is no guarantee that I will die from breast cancer, thank God - and that there are even bigger problems in the world. I am humbled by this reminder, and I hope that it can make me stronger as I face the adversity in my life. My adversity is minor compared to losing a family member (I'm making the big assumption that I won't be the family member in question!), compared to the tsunami last winter, compared to the poverty in the world....compared to so many things. How on earth could I have lost perspective on something so fundamental? Well, I must say, I'm glad to be brought back to earth on that subject, and it somehow eases my burden to be reminded that, though it's pretty large, it's certainly not the biggest on out there, not by a long shot.

And on another topic:
I'm afraid of dying. Who isn't? I'm not as much afraid of actually being dead (I think that things are pretty resolved for me at that point...!) as of the process of dying. If I believe I am dying, my heart will ache from the pain of losing, and leaving, Ryan and Tessa more than I could possibly stand, and I can not bear to think of the pain they would feel. I can not read stories about the dead or dying. I can not read an obituary. I can not look at the website of a beautiful young woman who is the friend of friends who died of breast cancer shortly after my diagnosis (leaving behind a beautiful son and husband) because I can not bear it. If you want to know what stage I'm in for this one, it's definitely denial. Because I simply refuse to think about the option of dying. It's not an option to me. It's awful. I can't think about it.

And on a lighter subject:
Wigs. There seem to be certain camps in the cancer community on the subject of hair. In one camp, there are those who cling to their wigs, trying to sleep in them (they actually sell a wig you can sleep in, in the TLC catalog for cancer patients) and never considering leaving the house with them. In another camp, there are those who believe that the wig belies who they are, and that wearing a wig somehow betrays who they have become as a person. Well, I'm not in either camp, it turns out. I have done the public pool thing bald, I'm often seen in a bandana or sun hat, and I will wear my hats this winter. But I have fallen in love with my new wig! When I wear it, nobody does a double take. I do not need to catch people's eyes to reassure them that I am, indeed, alive and vibrant. I do not need to explain anything to inquisitive children. I do not stand out in a crowd when I wear my wig. Plus, my wig is SO much prettier than my real hair! My new, long wig (I need to post a photo) has now been trimmed and styled by Krista, and I LOVE it. When I catch my reflection in a window when I'm wearing my wig, I think "Wow she has pretty hair!" before I realize that it's ME in the glass. I don't think that this is in any way a denial of who I am or what I'm going through - I certainly know I am living every minute of my life as a cancer survivor, but let me tell you, I just feel GOOD in my wig. Sometimes I don't feel like wearing the wig - it's not always comfortable, and as I sit here typing, I'm bald bald bald with nothing on my head - but I'm so glad that I have it and I think that the public "me" will wear it most of the time.

And speaking of my bald head - yesterday it became more bald. I'd been planning on having Ryan shave off a bunch of the stubble, but yesterday took care of that for me. In the evening, I felt the prickly sensation again, and most of the stubble came out. There is still some stubble remaining (I suspect it will never go away entirely) but most of my head is shiny now, with a lot of smoothness.

And here's another random thought:
I never did post here about my tea party! Well, a couple of weekends ago, we spent most of the weekend with my parents. We needed to run an errand to pick up Gavin's birthday presents, and since we were on the east side we popped in to Factoria. While there, I got hungry (I'm always hungry these days, especially for starch like bread, pasta, rice, and potatoes) and so we found a place to eat...a tea house! Tucked in to Factoria is "The Secret Garden," a place I wouldn't seek out (I'm not a big fan of malls in general, or Factoria Mall specifically) but fit the day perfectly. My dad and Ryan took one look and said, "NO thank you!" and went to pizza elsewhere in the mall, and this left my mom, my grandmother, Tessa, and I to have a ladies' tea party. We weren't dressed for the occassion, but it was so incredibly special to share this moment between four generations in our family. Tessa had the "teddy bear tea" which came with pink lemonade (for once I let her have it even though it probably was full of food coloring) in a little teapot, and a tiered tray with tiny sandwiches, fruit, and cookies, with a scone on the side. Tessa had her scone in the truly English fashion, with lemon curd and Devonshire cream. We all drank out of frilly pink china tea-cups, with pink napkins, tiny silver teaspoons, and all of the other silliness that comes with a tea party. Tessa learned how to place her cup in the saucer (though she clearly thought that saucers were a waste of time, she practiced well at being a lady), and the four of us chatted and enjoyed each other's company, as well as the food. It was delightful - and it's a moment that I've dreamed about. To have a tea party, a real one, with my beautiful daughter, beloved mother, and darling grandmother, is a treat that I will never forget. Perhaps it was even more special because of its spontenaity. It is a memory I will treasure for all my life. Here is a picture to show you the event:



And on that happy note, I think I would like to catch some rest myself. I will not proofread or edit, as I never do here, and I will trust that you all know that I could go back and craft my message if I had more time, but instead I will leave it at this and consider these ramblings simply my field notes - something to return to so that I can make sense and art out of it later.

With love,
Kristina