Thursday, September 25, 2008

Kindergarten is hard!

Tessa is struggling.

She does fine in school, but at the end of the day she is melting down. The girl is tired, tired, tired.

I'm realizing that we can plan NOTHING during the week at this time; school, ballet, and yoga and that's it. Tessa needs a good routine, bedtime at 7:30, and that's about it. Lots of snuggle time, lots of stories, home made food.

Tessa is also struggling with exclusionary behavior - she's leaving other girls out of her play intentionally. I talked to the teacher about it and my heart sank - this is absolutely NOT okay with me.

Tessa is a great kid with an amazing, compassionate heart. This is temporary, and we will fix it.

But kindergarten is hard!

Tuesday, September 23, 2008

Here's a really simple layman's article about my new drug and why I'm taking it.

And another:

And info about the drugs that are promoting my rapid bone loss:
I took Femara until it hurt to move, about two years into treatment, and then I switched to Aromasin. It's starting to build up the same kind of pain, but if I can last another year on it then maybe I could switch back to Femara or try Arimidex to finish out my five years on an AI.

And here's the dry abstract presented at ASCO:

Nobody knows what will save me, or how much this will improve my odds. I've done a lot of things off label:
- node dissection for removal of 25 nodes
- proph. mastectomy on the clear side
- proph. oopharectomy/hysterectomy
- Herceptin for 2 years instead of 1
- radiation after mastectomy (even though I "only" had one positive node)
- AIs instead of tamoxifen, even though I was premenopausal at diagnosis
- lost 40 pounds and I exercise and eat a healthy diet (this may be my biggest asset....?)
- reduced alcohol consumption to less than one drink per week
....and now the addition of Zometa.

I'm doing everything in my power, that is for certain.

General updates

Still green. It doesn't take quite as much of my time right now because I'm pretty used to soem of the changes. The weather's cooler now and one friend commented that my house was freezing inside; the good news is that I can no longer tell - I'm used to sweaters. Bread is baking (okay, mixing...the baking comes later) right now. The garden made it all season without any pesticides or petrochemicals. I know what to look for on cosmetics/soap labels (and have a handy reference guide in my purse to help). I send Tessa to school without plastic containers, with a cloth napkin, and so far nobody has said anything to her and a few parents have asked me where to get the containers so that they can, too. I'm feeling pretty green, even though there are so many others who put me to shame on that front. I've made lots of changes, and I'm proud of them. I'll do more, but it's not teh focus this week.

Making some book progress, though always slower than I want to.

Ryan's job is going well. Killer commute, but besides that things seem good.

Kindergarten is great, but Tessa is exhausted. If she's asleep any later than 8 then the next few days are rough (today is a case in point); kindergarten just wears her out. But today she read us a (very simple) book for the first time! It had things like "I see a _________" on each page, with picture clues, but she was really getting it. We're having more meltdowns and sassy behavior than usual, but we're working on it. I'm trying to remember that this is a stressful time for her - she's making new friends, learning new things, and there is SO much more structure than she's used to. (And she's been saying, "Mommy, I just want to stay home and play with my toys!" I don't blame her - it feels like we're gone too much.) Anyway, school is great, and she loves it....we just need more hours in teh day for sleep, play, downtime, etc.

Tomorrow is the curriculum night, and we're trying a new babysitter....a sweet teen from our church. Tessa adores her and she lives two blocks away on our street - could be very good!

Dance class is great, and Tessa practices regularly. Tessa is doing six sessions of yoga starting in a couple of weeks, sponsored by the school and a local yoga studio, and she's excited. If I ever find five minutes, I too will do more yoga.

We haven't taken the bus in a few days because we're so darned tired in the mornings....poor Shep. I think the dog is wondering what he did wrong - those long walks are so lovely.

I've lost a few pounds from being so busy, so that's good....

And speaking of which, it's almost 8pm which is when I'm heading to bed these days. YAWN!



If I'm a stay at home mom, then how come I am so completely and utterly overbooked?

Yikes. Running around like a chicken with my head cut off today....!

Monday, September 22, 2008


Today I logged on to the YSC to check in. I haven't been going much - hadn't been in months until the last week - and I learned that another warrior died.

Brin is gone.
Lola is gone.
Melinda is gone.
Cathy is gone.
Shabby is gone.
Jayme is gone.

I learned of Brin today. The last update on her was September 5; she had just learned that Taxol was no longer working on her mets, and she was "prepared to fight." She died four days later.

I am sending my love, prayers, anger and fear out into the universe. These women were amazing; they were incredible. And now they're gone. It's not about me, but it still hurts. They were not my inner circle, but it still hurts.

Sunday, September 21, 2008

Treatment updates

New studies are showing that Zometa, an IV bisphosphonate, is shown to reduce recurrence/mets by approximately 1/3.

Bisphosphonates are bone-building drugs, used in the treatment of osteoporosis and osteopenia (the precurser to osteoporosis). It makes sense that they'd prevent bone mets - mets tend to go after weak areas of the bone - but it's somewhat thrilling that they tend to prevent any recurrence or mets in other parts of the body as well.

So, no question as to what I will do next. I'll switch from Actonel, another bisphosponate, to Zometa, and hope that the extra help does me good.

The down side? Back to the chemo ward for IV infusions. Side effects mimicing the flu. Oh, joy. Hopefully this will prevent the downward slide of bone loss that I've already experienced (I'm osteopenic); hopefully this will help keep me NED.

It gives me chills to go near the building. Makes me feel sick to my stomach.

But I'm going to make the appointment tomorrow.