Worth it

At about 6:30pm, I found myself sitting on the couch at the party wishing I could take a nap. Fabulous friends, fabulous food, good times for all, I just get so tired.

But at 8pm, the prizes were awarded, and Tessa won "Best Child's Costume" for her bat princess ("Baterella"). It's such a small thing, such a simple thing, such a meaningless thing.... and such a lovely thing. She's over the moon.

And I'm pretty proud of the fact that I made the darn thing. With a needle and thread, of all things! Me!

Would you believe I forgot to take a single picture? I know, I know. But Halloween is still coming and she'll wear it again, and I'll get pictures this time. I promise!

Saturday

A trip to the coffee shop; a trip to Costco (where, I am pleased to report, we did not buy a single impulse item, despite the zillion distractions that Costco offers), and now we're home for a while before heading to the Halloween party.

Last night I was awake most of the time between 2am and 6am. Ouch. What's with that?

I'm looking forward to the Halloween festivities. Our whole family is dressing up - it's a costume party - and we're looking forward to spending time with our PEPS friends and relaxing. Tessa had a hard time falling asleep last night because she was so excited for the party - she's been anticipating this day for at least six weeks. I love these simple pleasures, and how, in Tessa's eyes, there is nothing more perfect than a costume party with friends, and I love how she brings out our joy in it as well.

We decided to bail on trick-or-treating in the Junction (sponsored by the Junction businesses) because the day is jam packed already, and in the past week Tessa's been having more meltdowns than usual, so we didn't want to push our luck. (Not sure what's up with that, but she's been learning at ten times her usual speed in the past few weeks so I wonder if her brain is just fried. I'm sure it's just a phase but I miss her easygoing self! Yesterday at the "best teddy bears picnic" with Zoe and Jessie she was just a disaster, despite how much she'd looked forward to it, and little things set her off. Sigh.)

My boob (one looks okay, the other, um, not) is really bumming me out. It pulls on my clothes. I know it needs another surgery to correct it, because this is not simple swelling, it's a relatively big problem. I've seen it enough to know. I don't know what to do yet. For now, nothing. But doing nothing makes me feel powerless and angry; I deserved better than this, and I don't just want to "take it." I feel really frustrated about it.

But today I must let it go, and enjoy the joys of the season.

Baterella

Though I'm so tired all the time, sometimes it's worth pushing through.

This afternoon, it would have been very nice to take a nap. No dice - Tessa isn't a napper, and there is no sense in forcing it.

Plus, tomorrow is a Halloween party that we go to each year, and (egads) I hadn't even begun making Tessa's costume yet.

Making. Yes, me. Usually I buy Tessa's costumes, but this year she said that she wanted to be a Bat Princess. You may have noticed that this is not a commonly found costume, as most little girls are not bat obsessed as is Tessa! In any case, I loved the idea of a non-commercial, creative, inventive costume that married Tessa's princess-phase with her bat-phase, so I committed.

When I was a few days out of surgery, my mom took me shopping at the fabric store....foreign territory to me, but I took the plunge. We bought yards and yards of tulle, some black polarfleece fabric, and some funky sheer purple fabric with sparkly black velveteen bats on it, as well as some notions. Those objects have sat in a bag until today, when I realized that I had 24 hours before the party.

So, I got out my sewing box and went to work. This is not an elaborate costume, but we made Tessa a funky tutu style skirt, and some wings. I have to say, I'm pretty proud of myself, and Tessa is really pleased with the results.

I'll post pictures after tomorrow's party so that everyone can see. There are two Halloween parties this weekend, plus Halloween proper, so it'll get lots of wear. And I'm more tired than when I started, but I'm very proud of my small accomplishment. Tessa still thinks I'm WonderWoman, even when I know it's not true. She thinks that I can make anything, and that I'm an amazing seamstress. It doesn't matter that this is laughable and somewhat comic, because I love that in her eyes I'm so capable.

So tonight I'll fall into bed feeling like I've accomplished something, and hoping that maybe tomorrow I just won't feel so tired.

Friday

Yesterday was a busy day.

I went to the doctor, and we discussed my breast results....uneven. I expressed my disappointment. The doctor is a good, kind woman, and she said she was "devastated" and was praying for better results.

I am to wear the hated strap at night, I am to rub warmed castor oil into the breast, and I am to do daily massages for 5-10 minutes twice a day. I am to exercise the area as much as possible to loosen up the scar tissue. I will hit the pool next week, Tegaderm over my wounds, to try to make that work.

I really wish, at some point along the way, that things would get easier.

Today I'm cleaning the house while Tessa's in school, and making a lunch for Katie, Jenny, and the girls. Tessa wants to have a "best teddy bear picnic" in her room with Zoe & Jessie, and I'm making a butternut squash soup for the ladies. It's a good way to get my butt in gear to get some things done around here, because my energy is zip and without a reason I think I'd let it all fall apart.

Grateful that it's a new day

I am so glad that yesterday is done.

Today while Tessa is at preschool, I'm going to the plastic surgeon again. She'll remove the nasty bits from my breasts, revealing whatever is underneath. Hopefully she'll also lift all restrictions.

Confession: I've already lifted most restrictions. 5 pounds? C'mon. Yesterday I went grocery shopping. I hauled my bag through airports. And on my trip I stopped wearing the **** bra and strap. I can't see any change from making that change....I just couldn't take it for another minute.

I'm usually 100% compliant with doctor's orders. Maybe the new me isn't so compliant.

When I was at the PS last time, she actually seemed shocked that I *had* worn the straightjacket 100% of the time, despite the fact that those were her orders.

Another day. I will try to make the most of it. I will try to set aside fear, and fatigue, and simply live.

Tired

I am really, really tired.

I have typed that sentence how many times on this blog? Countless. I'm tired of hearing myself say it.

The news of Melinda's passing hits me really hard. It wearies my soul. She did EVERYTHING. She was still praying for miracles. She was still seeking just one more treatment, still taking tests to find new avenues, still filled with hope. She had a fabulous attitude. She was still reaching out to others to help them through times of despair.

And now she's gone. It is not fair.

The trip tired me, and a day of errands and chores tired me, and I'm still not back to my regular self. I've heard some women say that the recovery time on each successive surgery is harder, and I don't doubt that at this point. I "should" be better, but I'm wiped out. My mind is tired, my body is tired.

another thought

My last post sounded braver than I feel.

A week ago, I was sending and receiving messages from this brave woman. And now she's gone, forever. It hurts. And it frightens me.

Another warrior lost

This morning I ran to the computer to check the YSC boards, hoping for a miracle.

The miracle did not arrive. Instead, I read that Melinda was gone.

Melinda was known as Dr. Melinda on the boards; in one of those strange twists of fate, she was actually studying oncology when she was diagnosed, and she took her board exams while she was in chemo, becoming an oncologist. She was patient, wise, funny, empathetic, and kind, and she touched everyone she spoke to. She last posted to the boards just days ago, and even her last words had optimism and humor. The world is the worse for not having her in it.

She leaves behind a loving husband; I pray he can find peace and comfort.

Whenever I think that do not have the strength to keep fighting breast cancer publicly, when I think about taking my life back to it's normal course (maybe doing environmental work, instead of breast cancer work), I am reminded why this is my cause. I will fight for Melinda, to honor her. I will fight for myself. I will not back away.

Rest in peace, Melinda. You are already missed.

Home from Greensboro

I can't tell you a thing about Greensboro, because I barely stepped outside of my hotel, which was located somewhere that was not downtown Greensboro. However, the weather was nice (upper 70s), and the hotel was nice (the O. Henry).

The trip was a whirlwind; my flights were delayed both coming and going, and so I spent as much time at airports and in the air as on the ground. It was not in the least bit relaxing, but I'm still glad that I went. The Genentech and Snow reps seemed to like my presentation a lot, and hinted that there were more opportunities to come. I appreciate the opportunity to make a little money for my family, but just as much, I appreciate the opportunity to channel some of my negative breast cancer feelings into something so positive.

I am home alone, as Tessa is still with my mom & dad, and Ryan's still at work. Time to catch my breath, and even possibly take a nap. (I never take naps, but I got up at 2:30am Seattle time, and given my fatigue in general that's a little over the top.)

On the second leg of the trip, there were several soldiers in chamoflage uniforms. I was surprised to notice that the chamo was in shades of tan and light gray, not the shades of green I expected...until my brain engaged, and I realized that these soldiers aren't fighting in green jungles, but on brown sand. My connection to the war in Iraq is a very distant one: I don't know anyone fighting there, I'm politically opposed to the war, and as a mother I just grieve for the loss of life of so many mother's children on all sides of the conflict. War is incomprehensible to me. I turn off the TV when visions of war - imaginings of Hollywood, or the news - come on, because I can not tolerate the images; they seep into my soul and sear my eyes and make me ache.

Maybe it was just a fanciful imagination, but it seemed like the soldiers on my flight were particularly handsome. They were also very quiet. They averted their eyes. As we disembarked, I asked one next to me, "Are you returning from overseas?" and he softly said, "Yes, ma'am." All I could think to say was, "Welcome home." No political agenda here. These are boys returning to their mothers, and the mother in me wishes nothing more than for all of the soldiers to be reunited with their families.

(And I will just mention briefly how old that "ma'am" made me feel. Ancient, actually. Grandmotherly, without the benefit of grandchildren.)

My problems are small in the face of the world's problems, and yet, they are my problems.

I am grateful that I am not a soldier. I am grateful that my husband, father, and brother are not soldiers. My heart goes out to every soldier and their families.

getting ready for Greensboro

Tomorrow morning I fly to Greensboro to do a speaking engagement for Genentech. I'm a bit nervous about it - I'm giving an inspirational speech to breast cancer survivors, and I have to deal with baggage etc. when I'm still bandaged and sore - but it's a good thing, none the less. I'm proud to be contributing a little bit of money to my family to help with expenses, and I'm proud of my work in the breast cancer field, and I enjoy working with the Genentech reps and being an adult outside of MommyLand. I'm gone for two days: my flight is at 11am tomorrow, and I return at noon on Tuesday. Tessa will go to my mom & dad's on Sunday night and Monday night so that Ryan can work.

I continue to be tired but I am healing in lots of ways. There is a lot of work to be done, but I'm doing that work.

My breasts are a disappointment to me so far. They are asymmetrical. I'm told there is swelling. We will see.

Today we'll have a good family day, and I might get a pedicure with a gift certificate I received before my surgery.

I'm actually sad that I am goign to miss the church service tomorrow; I couldn't schedule my flights around it without arriving at midnight (no way). Tomorrow's service is on forgiveness; I look forward to reading it. Ryan and Tessa will go without me, and it makes me happy to think of them there.

Off to the coffee shop with the family, including the dog. Have a good few days, everyone. (My body is too sore to carry around the laptop, so I'll be off email while in Greensboro.)

bandages

I am still bandaged.

Yesterday I went to the doctor, and she removed more sutures, cleaned the wounds, and re-bandaged me. One of the nipples is still "moist" and neither is healed; there's still fresh blood and it's a bit gross. I'm still wearing a gross medical bra and the strap that is designed to hold my left boob in place. I still have activity restrictions. I was allowed to take a brief shower yesterday, but not to let the water hit my chest directly, and then I had to dry my chest with a hair dryer on low.

It's progress, but painfully slow progress.

Today Tessa and I are going to visit the South 47 Pumpkin Patch in Woodinville, so we'll have lunch with Grammy & Grandpa, and then after the pumpkin patch we'll have dinner with G.G. Ryan will catch the bus in to join us, and it will be nice....although I'm a bit exhausted just thinking about it.

One thing at a time. One minute at a time. I'm okay, but this is how I'm living right now.

a better day

Today seems easier for some reason. I'll take it - I'll take what I can get.

I woke up to freshly brewed coffee again - thank you so much, Ryan. The little things mean the world to me.

Today I go to the doctor and hopefully get all sutures removed and get the bandages removed, which hopefully means no more straightjacket and a return to taking showers. That would improve my mood immensely.

And the therapist called me, and I'm getting in on Nov. 6.

Dare I say it?

I think...I'm afraid to say this out loud in case I curse myself...but I think that my joint pain is almost gone.

Oh. My. God.

I have been suffering so much from the stupid joint pain, really dreading movement, struggling to use my hands, dropping things, unable to open things, and wincing from the pain most of the time....and I think it's pretty much gone!

If this is true, and Aromasin works, then it's my new favorite thing.

So that is something to be happy about.

I have a lot of things to be happy about, including the fact that Ryan has been making me coffee and delivering it to me each morning in bed for the past few days. I really do understand how fortunate I am in so many ways, and I feel a lot of gratitude.

I just don't understand how to translate that gratitude into feeling so positive and upbeat. I don't understand why I feel like everything is harder than it should be, and why I'm so tired by even simple things.

The therapist left me voicemail; her first opening is in late November, but sometimes there is an opening earlier than that. Yikes.

Scans, retail therapy

I went shopping this morning - obviously I haven't committed to "buy nothing." (More to come on that, I am not done with the idea, just can't deal right now.) I got a couple of cute sweaters on sale - very practical, everyday kinds of things, which I was short on, and I also got a pair of practical boots for wearing when the weather is rainy and cool...and they're cute in addition to being comfortable.

And then I laid in a machine, got another IV, etc.

First, the DEXA, for bone density. I dropped another 4%, for a total drop of 14% in my bone density, making me osteopenic (precurser to osteoporosis).

Then, the MUGA, for my heart. It stayed stable at about 63%, so Herceptin hasn't left a mark.

So hard to go to the building, to be poked, to be nice to the nurses and technicians. I just feel so tired from it all.

Still wrapped in a straightjacket bra - I can not tell you how glad I will be to get it done with. Thursday.

The piano tuner - our neighbor, Curt - came by today, and we made an appointment to tune the piano on Thursday. I'm looking forward to having that done.

Everything just feels like hard work. Harder than it should be.

tired

Today I attempted to be normal. Playdates. Small chores. Talking with Tessa (who painted her best piece of art ever - a ladder leading to a rainbow and a girl next to it, whom she says is herself; the ladder is so that the girl can climb to the top of the rainbow to see how bright the colors are), setting up art projects, cleaning them up.

Beth made a lovely dinner for us, totally unexpected, and we enjoyed that tonight. Ryan is cleaning up right now.

Such small tasks. And I'm sooooo tired.

Tomorrow Katie is watching Tessa so that I can go to get two scans: DEXA for bone density (checking osteoporosis) and MUGA for my heart (to see if Herceptin left any damage - hoping this is my last MUGA). I hate medical-land. I'm tired just thinking about it.

On Thursday I have an appointment to remove bandages/final sutures on my breasts. I hope to take a 30 minute shower afterwards.

I'm playing phone tag with the cancer-shrink. I hope I get to talk to her soon.

Keeping it together

Okay, so far so good. I've read to my child. I've had another child over for a playdate. We walked with Katie & Jessie to the coffee shop, and so Shep got (a tiny bit of) exercise. I've swept the floors. I've made lunch and put it away. I sorted through the junk mail. I called the Seattle Times to change our subscription (weekends only, please).

These things feel like a success.

A normal day

I am hoping for a normal day. Ryan is off to work (he wanted to stay home to take care of me but I was certain that I would be okay today, and also certain that his work responsibilities are important, too), and Tessa and I are home. There are no activities scheduled (preschool is T-Th-F), Tessa has the last of her cold but is feeling much better, and so we're having a quiet day.

I'm sick of chaos. My emotions are still in a turmoil as I deal with all this stuff, but I can get my day-to-day back under control, at least.

trying to see

I'm still trying to figure out what my new world looks like. I'm not the me I was before. Of course I'm still me, but I'm not. See? Confusing.

I woke up with a whopping headache and grabbed an Oxycodone. The headache is a bit of a dull thing behind my eyes now, and I've been able to listen to Tessa play the piano without wincing, despite its loudness.

(The piano was a recent gift from my grandma, "G.G.," who has moved to a smaller home and didn't want to take it with her. I LOVE IT. I love it's place in my home, and I love that my daughter will grow up playing it. I love the way it looks, I love the way it sounds, and I love the way it draws children. I love that it reminds me that one day when I have a little extra time and money, I will take piano lessons for myself. And I love that when I see it, I think of my grandma, and how we understand each other, and how much I love her.)

I made a big breakfast - we used to go out for breakfast a lot but part of calorie watching and money watching means not doing that so much, so this time I made it. Bacon and eggs...not light on the calories, but still better than a resturant because no hash browns, 100% whole wheat toast, cage free eggs, hormone free meat. And sides of fruit (gifts from Katie, who did a grocery store run for us), including perfectly ripe pears. Ryan helped prep, and did the clean-up. Tessa poured the milk. It's a family morning.

And we've been listening to music (not just the piano, but CDs) and reading the paper. Tessa's been happily playing, having fun.

We didn't go to church because Tessa is too sniffly and coughing to be in a room with lots of kids; I don't appreciate it when other kids give her colds, so we're trying not to do that to others. We are going to go to the coffee shop, though, where we will keep a close eye on her.

Taking it slow.

Not PollyAnna, not wallowing

It's time to get moving.

Not to take over the world, not to solve everyone's problems, but to stop wallowing. To let feelings in, but not allow them to overtake me as much as they have. To allow myself to feel, but not allow the darkness to swallow up the light. To look for the light switch(es) or the way out of the tunnel.

I soaked in the tub - waist down only, no water allowed near my breasts - this morning and read "Martha Stewart Living," a gift magazine that I don't usually read but enjoyed as a departure from my normal fare. I'm dressed, and wearing warm clothes, prepared to go to Lincoln Park.

Ryan is packing a backpack with snacks and a thermos of peppermint tea, and we're going to Lincoln Park to let Shep run around and give all of us some outdoor time. Tessa will collect nature samples - beautiful leaves, acorns, pinecones - of the season. I will breathe deeply in the misty air and look for joy in the gorgeous views, my scampering pup, my playful daughter, and my strong husband (who is back to himself and prepared to make amends and take care of me).

I saw my breasts fully exposed for the first time today, and looked in the mirror for the first time. They are two different sizes. There is swelling but I suspect that I needed that smaller implant, the one that we didn't have, the one that wasn't ordered. Maybe this means that I made a mistake moving forward with the surgery, but I refuse to see it that way. The mistake was the doctor's, not mine. I suspect that my breakdown would have been worse if I didn't have the surgery behind me. Maybe in a few years I'll go back for another surgery. Maybe in 10 years when it's time to replace the implants (they have a finite lifetime) I'll do it. I just hope that I don't get further encapsulation and need to do a surgery this year or next year, because I think I'd rather live with it than face that again.

making up

I got my chance to make it up to Tessa.

Fifteen minutes later, she came to me, crying. "Mama, my ear hurts...please pick me up, pick me up, Mama...." with tears running down her face.

I can't pick up anything over 5 pounds. Crap.

But I held her in my arms, stroked her hair, got her Children's Motrin, made a warm compress, and snuggled in bed with her and read her books (she lost interest in the pony movie because she wanted to be in her own bed - no TV in her room).

We looked at "The Human Body" book and learned about how ears work. We read "Alexander and the Terrible, Horrible, No Good, Bad Day" and we compared notes from our day to Alexander's and we laughed together.

It felt good to make it up to her, to be there when she needed me, to give her comfort.

And Ryan is up and feeling himself again and he's making me coffee and wants to take care of me.

I'm exhausted. All of this is exhausting. I couldn't sleep from about 1-4am last night...I just lay there. I hope that's not a side effect of Lexapro.