Friday, May 01, 2009

Insurance battle

I'm due for my annual breast MRI.

I can't have mammograms, because a) the skin tissue is so thin that I literally imagine that it would burst under the pressure, and b) I have lymphaedema.

I would think that those reasons would be suffiencient, but no. Aetna says that I can't have an MRI without a mammogram.

No way am I getting a mammogram. It sounds dangerous to me, given my "unique" medical history, and I can't believe they'd suggest it. Plus, I fall into every risk category (greater than 25% of lifetime recurrence, implants, radiation to the chest...) so why on earth would they fight this?

I'm counting on Dr. Rinn to make my case but MAN this hacks me off. I have enough to do without fighting this!

Okay, back to writing. Harumph.


Today I'm working on balance. Working on the book....but trying to get some laundry done, too, and un-bury the house (which has become a disaster since I stopped dedicating so much time to it).

I want to work. I am falling in love with my Hunts Point project, really getting into it, and it's satisfying to me in a way that housework - ha! - never could be.

But I had a rhythm in my day that is lost. I used to keep the house relatively clean, with regular vacuuming and bathroom cleaning and all that. Laundry was pretty caught up - always a load to do, but not a mountain to do. Dinners were more planned.

And right now I'm scrambling, and I feel like my life is coated in doghair (yechhhhhhh) and my bathroom feels gritty and the laundry IS a mountain. So, I spent a couple of hours this morning working on that, and now it's not as totally disgusting, although not great, and now I'm going to try to immerse myself back into the book.

I just hope that the phone doesn't ring and that I don't get distracted by some other undone chore and that I don't find myself wandering to the fridge, which is oh-so-accessable....

This balance business is tough.

Thursday, April 30, 2009

Swine Flu in Seattle

Well, the word is out that a child in Madrona contracted swine flu somehow, and his school is closed for 7 days, with precautions to families not to meet outside of school. A pediatrician in Everett is also suspected to have the disease, and through no fault of his/her own saw 22 patients the day she got sick (felt good in the day, sick in the evening). No known cases in West Seattle, but I'm concerned.


(Really, thinking something stronger than "dang" right now.)

I am at the public library downtown, waiting for the Seattle room to open, and browsing the web. Reading this, I have to suppress a strong desire to run back to West Seattle, swoop up Tessa, and bring her home for a week. House arrest doesn't sound very fun, but the idea of my little girl getting makes me shudder.

Instead, I'm going to grab what I need to keep working (last time I was here I couldn't get everything before I needed to leave to pick up Tessa) and then I'm going to run ot the grocery store to pick up essentials and I'll pick up Tessa at the regular time. I plan to treat this like a forecast for snow: check the pantry, make sure that we're stocked up, make sure that the car is filled with gas, and plan to ride it out. I think I'll check out some extra library books, make sure that we have enough glue sticks, and plan on being prepared for some time doing art, reading, watching movies, popping popcorn, and playing on the swingset.

I am trying to be zen about this but I'm feeling frazzled. "Level 5 pandemic" is not vocabulary that I'm comfortable with. But my goal is to not be some crazy panic-stricken fool, either.

Isn't it always something?!

Wednesday, April 29, 2009

More good news!

About a third (31.4%) of the women had new joint pain in the 3 months after starting hormonal therapy. During the next 9 years, these women were 40% less likely to have breast cancer come back compared to women who didn't have new joint pain.

So maybe all of my horrible side effects were actually worth something?!

Getting ready for a whole new person

Me, that is.

My beloved oncologist called me back. I told her about my issues with Aromasin (and Femara before that). I told her "I don't think I can do this any more." She hooted and applauded! She told me that she's been sending me subliminal messages to go off the AI and switch to tamoxifen. With the new study showing three years of an AI followed by two years of tamoxifen equal in efficacy to five years of AI, it is a no-brainer.

She told me that my fatigue was related to the AIs, and the pain is related to the AIs, and that both should go away. Hot flashes will reappear, but the rest will go away. I will feel like a new woman.


The prescription is to go off the AIs for a month, and then start the tamoxifen (right after I return from Portland). She said it make take more than a month to get the AIs out of my system, but after a month on tamoxifen we'll know how the side effects will be in the long term.

I am so hopeful. I really, really, really need this break. I am so tired of trying to move and feeling so bad. She said I really might feel like my old energy is back.

I don't ask for a whole lotta prayers, but I'm asking now. I really feel like I need this to work. The prospect of feeling this bad for the rest of my life is really scary, and I need a change for the better. I need it so that I can focus on the Hunts Point book, focus on my family, focus on running, focus on all the many things that I care about.

Tonight, when Tessa goes to bed, I will go to bed. Hopefully this time next month I won't feel a NEED to do that any more.

A whole new me. I could really get used to that.

Bad dreams

This morning, early in the morning (5am or so) I had a bad dream.

My hand was hurting, so I went to the doctor. They did scans, and solemnly told me, "We're sorry, it's hand cancer. We'll have to remove your hand. It's on both sides of your wrist, and into your fingers." I remember thinking "I wish it wasn't my right hand" and then I woke up.

And in real life, my hand and wrist were just hurting hurting hurting. And I realized that the pain had gone through my dream. Phew - what a relief to realize that I didn't have "hand cancer," whatever that might be.

But I have pain. Real pain. Pain that makes it hard to move sometimes. Pain in my wrists, fingers, feet, knees, everywhere. Pain that wakes me up at night. Pain that makes me change the way I move around. Pain that makes me slow(er). What I do, I do despite the pain. It's a mind game I play. So when you see me moving quickly, it is in spite of it. And I'm so tired of that.

I think the pain is making me tired, too.

I blame it on the Aromasin - it's known to cause joint issues.

I have a call in to Dr. Rinn and I'm hoping for a return call this evening. I do not want to take one more day of AIs. I feel ancient, and I have no energy, and I just hurt so much.

Someone pointed out to me, "Look at your blog - you have good days, too." Yes, I want to say, this is true. I have so much in my life to love. But the pain is shadowing all of it. It is with me all the time now and sometimes I push it to the background so that I can focus on something else, but it keeps coming back.

I'm hoping to switch to tamoxifen. One of its side effects can be weight gain. I hope that I'm immune.

When I was undergoing chemo, I thought that anything would be better. With radiation burns, I thought anything would be better. And now....I know that there are lots of things that are worse, but I do not feel good. Or good enough. And I want to change that.


I am following the story of little Hannah, the ten year old with breast cancer. Her family has started a blog, and I follow it with a prayer in my heart for Hannah.

I have been reading comments, and I had to do a public reply for some of them.

A common thing to say to people facing a serious disease is "Just be positive, and you can beat this!" or some derivation of that statement.

On its face, this is good advice. When we approach our problems with an open heart for solutions, it helps. The way we perceive our problems can be part of our problems, and if we just mope and complain then we have extra problems, for we miss out on the sweetness when we're focused on the bitterness.

But I still hate this advice. Know why? Because it is not always possible, or appropriate, to be positive when you have a serious disease. Having someone who is in perfect health say "just chin up!" sounds like "stop whining!" Sometimes, it is even insulting. It is APPROPRIATE to cry, to rage, to ask unanswerable questions of the universe. What if I die? Am I strong enough to fight this? Why me? Those questions are painful, and to me, that is perfectly rational. Nobody says, "Hurray! I got picked for breast cancer! Please cut off my breasts and take my hair and make me feel sick and old because I just KNOW this is going to be a character building experience! I'm so grateful!" Maybe there are elements of that in our path to acceptance, but there is some negative thinking, too.

And that is OKAY.

The other part of the advice that makes me hate it? The implication is that, if positive thinking will cure me, then negative thinking will kill me. That makes me think that I'm not allowed to have doubt or fear, and I think that is down-right unreasonable. Mother Theresa had doubt (her letters were published after her death) in her faith, and she is a saint. I am NOT a saint, and I am allowed doubt. It does not make me less of a person, or less of a survivor, it makes me HUMAN. My positive thinking will not cure me any more than collapsing into tears will kill me. Both are real, and I need to be allowed to weep or rage against the unfairness sometimes, too.

I'd like to believe that I am more positive than negative, that I have confronted this disease with a little bit of grace sometimes, but I am not perfect, and I did not approach my disease perfectly, especially if "perfect" means "perfect optimism."

Yes, it hits a nerve with me.

So next time you're talking to someone with a major hurdle, encourage them, certainly. But please don't tell them that their positive attitude will save them. It didn't save me from getting breast cancer in the first place, but I don't think I brought this on myself. And if I feel doubt, or fear, or anger, it doesn't mean that I can't move means that I feel grief. I bet you would, too, but I hope you never get to experience what I've experienced.

The economy
In short? It's bad. It's not getting better.

Our small family is doing okay right now. We are fearful because BearingPoint is still in Chapter 11 and we don't know what will happen next - the company is breaking up into pieces and being sold, and we don't know a) if Ryan's contract will be sold and b) if the buyer of said contract will keep the BearingPoint employees or place their own people in the contract. Those are some pretty big concerns for us. There are a lot of great people out there (13 million, according to what I've read recently) who are underemployed and looking for work, and so a job loss is particularly scary in this economy.

If Ryan's job does NOT go away, we are doing well. I'm working like mad on the Hunts Point book, and Ryan's paycheck pays our bills, so with the combo, we're digging ourselves out of debt.

It's kind of tiring holding my breath all the time, though.

Tuesday, April 28, 2009


If I was a cursing girl, I'd insert a lot of curse words here.

I am so tired. Yes, I worked today, and it was great. (And the folks at the Public Library - the Central Branch downtown has amazing collections - were so kind and helpful.) I used microfiche for the first time since college, and I got to thumb through newspaper books from the 1880s, and it was all just so darned amazing to get such rich data.

(In case you can't tell, I'm working on the "early days" of the Hunt/Hunt's Point story.)

I will have to spend many more hours there to get what I need, but I'm so happy to do the work.

But I'm tired and grumpy and Tessa was amazingly grouchy and I worry that she's getting sick and my house is a mess and I have phone calls to return and paperwork (bills) to go through and aghhhhhhhh.

When did I become such a whiner?

Maybe tomorrow I'll feel more rested.

Monday, April 27, 2009

"Mommy, we're supposed to PRAY!"

The problem with Tessa is that sometimes she listens to me. Yes, you read that right. Of course I get irritated when she doesn't listen, but yesterday I got irritated when she did listen.

And I don't really think I'm all that irritable, but....

I digress.

Anyway, yesterday Tessa repeated my words back to me when I wasn't prepared to listen. We had gone for a walk - five blocks downhill - to see the Hisatomi's new puppy (hurrah!), had a lovely visit, and were headed home. Tessa had her Razor scooter, and we were enjoying the weather and the day, though I was feeling the push to get a few things done and to move on to the next activities (planting pots, etc.). Tessa said she wanted to stop (Mama, it's so steep!), and proceeded to look at the clovers and the daisies in a patch of grass. I waited what I thought was a reasonable amount of time, and said, "Okay, now let's go."

Tessa said, "No, Mommy, we're supposed to PRAY."


Oh, yah.

Yesterday I did the children's story (the story for all ages) at church. Since the service was based on Mary Oliver's poetry, I read "The Summer Day" to the children, and then we talked about different ways to pray. Of course, you can pray in church, and you can pray like a grace before a meal, and you can pray "pleasepleasepleaseplease" and you can pray "thank you" and you can pray a yogic breath....and you can pray by paying attention. We talked about how Mary Oliver likes to pay attention, to wander the fields. I mentioned that the kids needed to help their parents with this kind of prayer, because adults get so grouchy and schedule oriented and their cell phones keep ringing and they're always doing laundry and carpools and hurrying and scurrying....but children know how to live in the moment, how to get caught up in looking at the small stuff, how to enjoy just being where they are and not thinking about what happened yesterday and what will happen next. I told the kids to help their grown ups, because we need help with this kind of prayer, and it's an important prayer, too.

And when I wasn't thinking of it, Tessa called me on it.

And I didn't respond properly. I said, "What? Oh, that. Ya. Hmm. Well, honey, don't you want to go home so you can play on your swings?"

I have a lot to learn.

I've been listening to a podcast about mindfulness that is right on track.

Better yet, I took Shep for a run/walk and we walked to Colman Pool and back. Out in the middle of Lincoln Park, I took off my headset and just breathed in the smell of low tide and felt the wind and saw so many birds and wildflowers at the side of the trail and people with their dogs and I stopped and let Shep sniff every one (only the ones who wanted to, I should say). I was done running anyway- my endurance is zip - and the slowing down did more for me than any power walk, anyway.

Last night after realizing my mistake yesterday I told Tessa not to give up on me, that she could teach me, that I didn't know why I got confused so quickly, but that I like her lesson.

Thanks, Tessa.

This I believe

There is a program currently on NPR, and available on Podcast, called This I Believe. It's one of my favorite things to listen to, as every essay brings a new perspective, and makes me question my own ideas. (Questions are good.)

This has me ruminating about what I believe in. It turns out that it's not so easy to narrow it down to a few succinct sentences; it's not easy to summarize a lifetime's beliefs in one small essay. I'd like to write my own This I Believe essay, but I can't yet, because as usual, I haven't come up with the one defining belief that would make it all worthwhile. I'm thinking about it, though, and I'm starting to define a list of things that I believe in.

- Having cancer does not make anyone a better person. In perusing the "This I believe" archives, there are countless essays on cancer, and many of them contain the word "gift." Well, I'm here to tell you that I do not believe that cancer is a gift, unless by "gift" you mean "useless, ugly item that one can't get rid of and wishes one had never received." For me, the word gift is full of positive connotations: the love of the giver, the delight of receipt, the warmth of friendship, the smile of knowing that someone thought of you, the joy of Christmas or birthdays or (my favorite of all) just the joy of giving. Cancer evokes none of these images for me. I think that the people who believe that cancer is a gift think that cancer somehow made them a better person, and I'm glad for them, but I utterly, completely, adamantly disagree. I think that cancer amplifies what you already have, but I don't think that it makes anyone better, or worse. For some, actually, it causes them to hide their head in the sand. For some, cancer is a weapon that allows them to be unkind to others under the guise of "hey I have cancer I can say whatever I want!" And certainly, for some, it causes them to look deeper into themselves and pull up whatever they like best from inside. Cancer did not make me a better person. I believe that cancer was just one of life's many reminders - admittedly, a louder reminder than most - to be who I want to be, but cancer did not change who I am. Cancer changed my life, but it did not change me.
(Caveat: I am a changed person. But I believe that life did the changing, not cancer. Still working on this idea.)

- I believe that my daughter is the wisest teacher I have ever met. Through her six year old eyes, I learn perseverence (learning the monkey bars, despite blisters from her attempts); I learn observance (oooooooooooh look at the bug's wings - they're so pretty!); I learn faithful love (six year olds know how to love a friend like no other); I learn how to laugh at just about anything, including bad jokes; I learn how to use my body (freely, in running and climbing and jumping and without a thought). When I hear her use my words, I learn who I am, and what I like and loathe about myself.

- I believe that simplicity is the most complicated idea. I've heard "less is more" more times than I can count, but I also see that there are entire sections at the library how to live with less, how to enjoy more with less, how to de-schedule, how to focus on what's important and give up the rest. It's not easy, being simple, and being simple is not simplistic.

- I believe that without compassion toward self we are completely incapable of true compassion towards others.

- I believe that perfection is a curse and not a blessing, and that pursuit of perfection ruins lives.

- I believe in birthdays, and in marking them with celebrations of simply being alive.

- I believe that the food I prepare is a sign of my love. Some meals are celebratory for people that I love, but that's not quite it.... I believe that when I take the time to find healthy, delicious food ideas, and prepare them well, I am demonstrating my love not only for the people who will eat my food, but for being alive, for caring for my body, and even, if done right, caring for the earth.

- I believe that we will never find peace through war.

- I believe that it is possible to have too many friends.

- I believe that in an effort to not miss out on anything, I may be missing out on the most important things of all.

- I believe that everyone struggles, and that knowing that, life is much easier.

And I could go on. What do you believe?
(Note: you can read the most popular, the most recent, or you can search by topic. Some 60,000 essays have been submitted so far. I'm still working on mine.)