only for now

taken this morning at 4:00. we are off, and so are they. back soon.

tell me about the rabbits, george

Today I am like Lenny in Of Mice and Men. "Tell me about the rabbits, George," he would say, and George would soothe him with the ritual story of their pastoral future, serene, and comfortably living off the fat of de land. Several times in the past couple of days I have had to ask Laura to tell me the story of the rabbits. "Tell me again what Jim [friend and breast doc who has given us wonderful support] told you." And she will get out the piece of paper where I had written what I needed Jim to say. She reads, and adds Jim's clarity and reassurances to the text: "If you don't remove the cancer, it will spread. Surgery is necessary. Then Jim said, p, 'If you don't have surgery, you will die of this cancer.'" Then she goes back to my requested script: "The choice paula is making is not unreasonable or irrational." Then she says, "Jim says you are making a very good, very reasonable decision." Then I am okay for a few hours, until I need to hear the story again.
There is a lot of Lenny in me right now. A little slow, dropping cognitive stitches now and then. Mixing up words and plowing through a sentence anyway. Lots of going into a room and forgetting why. I don't know if Lenny did that, but I would imagine so.
It was a great weekend, though. 17 Chus, as we had been eagerly awaiting. It is effortless for me to be with the family, and this alone was reason to be grateful.

Laura is in serious nesting mode. Haven't seen her this lost in puttering around in a long time. She aired out the blankets, vacuumed, dusted, was on the move for hours. I think we are not far apart from the birds who do these same behaviors -- before the intense caregiving begins, mom bird (in most cases, no?) works on the nest like she's had several cups of avian coffee. Laura was doing this, without the coffee.

Phuc and Sue dropped by yesterday in the middle of things. Phuc, a tattoo artist in Portland, Maine, has offered to give me new nipples someday. How's that for being a friend?

I imagine I won't write until after the surgery now. To anyone who reads this, on the off chance that someday I will make this blog findable, hold me in the Light! Be back soon, sore, flat, and grateful still.

all about the light

I am grateful for so much on this day of giving thanks -- it is quite overwhelming. I love Thanksgiving -- of all the holidays, it is my favorite. It invites us to do what I think we are here to do. Which reminds me of several years ago when I spent about 3 months painstakingly drawing up a personal mission statement. I talked to lots of people during that time about how they find meaning (some of you may remember my asking you), what their mission is, etc. etc. I gradually birthed an 8.5 pound mission statement which is still taped on my desk, and which still works to guide me now and then. But right toward the end of that period of time, I went to a lecture by Jonathan Kozol, and he was going on and on in his brilliant fashion, I half-listening, and then he said, "I mean, after all, what are we here for except to look for light and praise the light when we see it?" And I thought, jeez, THERE's a mission statement for you. I could have saved a lot of time.

I think I am coping quite well, overall. And then something teeny tiny happens and I can see that I am a little quirky. Yesterday, the bright red, schmancy REI running jacket that Laura and I had ordered for me -- and paid an extra $25 to have it get here in time for me to run in it 5 times before surgery -- came. Oh, boy! Our extravagant way of reminding me of health, freedom, movement, and (bright red) celebration was here and it was ----- the wrong size. At this, I melted for a few minutes, and my voice was of a disappointed 7-year-old who had to wear her brother's glasses instead of those nice baby blue cat-eyed ones like Emily Donovan had (true and traumatizing reference there). "I wanted a MEDIUM," I whined. Waaaah. I felt ridiculous, but there it was. My stress, bubbling up and over, just for a bit.

So I know that, for all the great compartmentalizing I am doing, cancer is on my mind at all times. A few nights ago I had what I think of as a little poke from Freud. I dreamed that I had bought a bus ticket (hmm, BUST ticket?), and that the bus company imposed a flat rate for tipping the driver. I was annoyed by this, and chastised them for having a policy that forced a flat rate for tipping. One of the managers scoffed rudely and snapped, "You think that's flat? It's going to get even flatter than that!"Somewhere in there, I guess my unconscious mind is trying to coming to terms with getting even flatter.

I have learned a bit about the distribution of emotional labor in the face of a life-threatening illness. As I wrote earlier, some people are angry about my cancer. I still am not aware of feeling angry at all about it. Stunned, sure, sad. Yeah. But not angry. So other people can, it seems, kind of do that emotional labor for me. I am grateful for that, too. Even as I learn that I would rather be sad than anxious (a driving force behind some important medical decisions), I know I do not want to be angry. So thank you, whoever is carrying a bit of that for me. Still, please set it aside as soon as you can.

The Chu family (we should be 17 strong) is having a therapeutic laughter yoga circle when we all gather here on Saturday. I am really looking forward to that. Years ago I got certified as a Therapeutic Laughter Yoga Leader, and ran a few sessions at school. Though everyone said they loved the idea, few came to sessions, and many of those that did had trouble letting themselves laugh hard in front of others. Maybe teenaged girls (and their teachers) wasn't a fair way to start. Anyway, THIS group ought to have a very good time.

I'll be in surgery Monday morning, but in the grand scheme of things, that's small potatoes (har). Looking for light and praising the light is what matters.

Oh! Here I will thank Gigi for the inspiration for what will be my parting message to the surgical team right before I am put under. I will ask them: "How do you keep a turkey in suspense?" -- wait for their quizzical looks (you can still see this in the brow, despite surgical masks), and say "I'll tell you after I wake up." Then off to the deep sleep of anesthesia. I have heard that laughing brains learn better. I hope they do surgery better, too.

I hope everyone has a fun, loving, restorative weekend. Let yourselves laugh easily, with your whole body. Do not be shy about happiness.

I send my deepest gratitude for your light.

fear du jour

Hugging Laura has proven to be hazardous. I cry if it lasts longer than a second or two. We have to do the quick squeeze and release or I fall off an emotional cliff.

Tonight I am anxious about chemo. I'm way ahead of myself, but for some reason it is the fear du jour. The only thing more distracting than an elephant in the room is a therapist with a chemo-induced bald head.

tracking the wolf

So it begins. To give my fragile sapling of a blog some roots, I will post a few emails I've sent out that track my new relationship with cancer. These will be old news to anyone who is reading this, but it's a way for me to remember how everything is unfolding.

I've never been too happy about opening a blog to find a long, long entry. But who the heck am I writing to and for anyway? Ellen, I know you're there. Couple of kids now and then, praps. The sleeping spouse (how weird is this? for me to be up before her, before the sun?). Other than that, I have no idea how helpful or interesting this may be.

Sally is coming to visit today. She was the first person to express rage about my cancer. She got angry at the smiling posters in the CVS windows. She wanted to smash them. I am still blinking rapidly over that. And Gail, who made a beautiful alpaca skin stuffed bear (her own alpaca, of course -- Gail is a two-breasted Amazon who can do ANYTHING), said she screamed "It's no fucking fair!" into the Maine woods when she heard about my cancer. Blink blink blink.

I don't feel angry at all. Maybe I will later. I have discovered that others get to hold the anger for me, or something like that. I get to hold the humor. I can joke about my cancer; nobody else can. Not yet. I am happy to hear humorous things -- a good laugh is my very favorite physical experience (yes, even more than what you are thinking). But my cancer is my family, and in an odd way I am similarly protective of it. I guess I need to know that whoever jokes about it loves me unconditionally. And even then, it's only funny coming from me. What is that?

Today's thoughts about the cancer: I think this experience will increase the depth of my compassion, which is always good. And humility, god knows. I worry that I am intrigued by death, and that even that thought will snag me somehow. I have always wanted to live a long life. For a long time now, my mantra has been “All my cells are doing their jobs perfectly to maintain my perfect health!” Wha hoppen?

I am interested to see how I will get through this. How will I need to change? What is going to happen with my great little running regimen, that has been so good for me? What will it mean for my practice, What about the part of me that feels relieved that I am not going to take new clients for awhile? Is that bad?

that arugulator has to go, ma'am

Well, I feel like a schmuck for complaining, but the surgery (double mastectomy) has been scheduled for Monday, November 30th. We had really hoped for a week earlier. Why a schmuck? Because good news came today, too. My liver and kidneys are clear, a fabulous thing, and my Her-2 receptors (which Ting points out sound like sci-fi code for boobs) are negative, which may be a good thing, too. So I think I should not kvetch about the wait.

I note here that I am not sure why I have begun to sprinkle my sentences with yiddish complaints. Mebbe it's the angst of it all. Oy.

I have some homework to do: this blood doodah and that EKG whatsit. But mostly we need to wait, and that feels hard right now. If the next two weeks feel as long as the last week, they will feel like a very long time.

We still don't know about the post-surgery treatment, the stage of my cancer, etc. Tests did show a lack of hormone receptors (this is not a good thing), which might limit me to chemotherapy as a treatment option. We won't know for sure for awhile. What we do know is that I will be in treatment for years, and that the challenge is to come to see that as good news. Years themselves are good news.

As I've said to some of you, my getting cancer defies all predictive measures. I don't drink (okay, maybe a girl beer every month or so) or smoke, have no family history of cancer, I exercise, I nursed my babies, had 'em starting at 29, I eat well, even arranged to have a Chinese father (low risk!), plus a (well, white) grandmother that lived to 105. I don't even hold a grudge. So I have been eating a lot of humble pie with a big dollop of gratitude on top.

Still, I am sometimes scared. Of chemo. Side effects. Of errant cells. Of a body with no breasts or nipples. All that.

One of the weird things about all this (more kvetching??) is that I feel absolutely fine. To elect to have surgery on a fine machine like mine (say it, sistah) feels like a real assault. I have to trust my doctors; I understand that. But it's something like taking a perfectly running car to a mechanic and having him/her say, "Well, yeah, if you don't get rid of your arugulator now, it's going to create kind of a fermionic phagmofinas effect and then spill into your apex fulminator, and that would be bad." And so you just have to say "Er...okay. I guess go ahead and take out the arugulator!"

Does it sound like I am whistling past the graveyard? Hell, yeah, I am. Laura and I are often deeply anxious and sad about this, and my sometimes goofy emails belie the topography of our reactions to the cancer. But I like that my sense of humor has taken care of me as it has. I like that in the midst of grieving that my chest will have no nerve endings or sensation ever again, my mind says, "Hey, cool. I can put a cup of steaming hot cocoa on my chest without a coaster." I love that my mind thinks of that, and offers me relief from the sadness. Thank you, Greatness that created minds at all, and Power that created these spectacular, nearly perfect machines that we inhabit. Thank you, breasts that fed three beautiful babies who turned out to be amazing, beautiful people.

I continue to work doggedly on boosting my immune system in advance of surgery and post-surgery treatment, and have had more beets in the last week than you can shake a stick at. FYI, and please cover your ears if you don't want to hear this: beets make everything else going through your system bright pink -- that's the most delicate way I can say it. But the pink seems fitting for breast cancer, doesn't it?

For now, family and friends who are reading this, please just keep sending good energy and thoughts our way. Help me get through these next two weeks in good cheer! Please support Laura, upon whom I can comfortably lean if she has reliable places to lean herself.

Thank you for listening, thank you for loving me. A thousand times, thank you.

Love all around us,

p/paula/mom

hard day

Today felt hard. First, not as many results of tests were available as we had hoped. They had said "Monday or Tuesday," but the mind latched onto Monday.

We did learn a couple of things. First, the mysterious area of the left breast has a BIRADF (a rating scale) rating of 4. Scale runs 0-6. I forget what each number means, but 3 is "there is something there; get a mammogram in a few months." 4 is "something looks suspicious. there's about a 1 in 5 chance it is cancer." 5 is "it is 95% likely that this is cancer." 6 is what I have in my right breast. So the left thing is a 4. That concerns my surgeon. And me.

Also, it turns out that they can't do an MRI-assisted biopsy on the left breast because of the location of this "suspicious" something. And a lumpectomy would, again because of the location, severely disfigure me. I could have another MRI, in which they insert a wire into my breast, and then, days later, when they are removing my right breast, the surgeon can take out the area around the wire. They would then send this to a lab, and two days later, we would know what's what. But by then I will be home, recovering. And, if it cancer, I would need to go back to the hospital, go back under, and remove the left breast.

It feels as though I am being forced (by circumstance -- not by anyone else) to choose to have both breasts removed without even knowing if there is cancer in my left breast. But the stakes feel high, or might be possibly high, or something like that. I can hardly think clearly right now about it all. Having gotten cancer this once, I already am statistically at a higher risk of developing cancer in the other breast. Removing it would pretty much remove the worry of developing another breast cancer. I will always be at a higher risk now of developing other kinds, and my surgeon says to brace myself for the possibility of removing the ovaries, given the nature of my tumor.

But there's another piece, too. Sorry if all this is too much detail - - it helps me to write it down, and it is nice to imagine you listening. The other piece is that when they tested the hormone receptors, they were negative -- in this case, that is a bad thing. It means I may not be eligible for less aggressive post-surgery treatment (e.g., Tamoxifen, a five-year regimen). I might instead need to do chemotherapy. That is a serious bummer to me.

We will know more tomorrow -- something about the Her-2 receptors, for one thing. Also, the abdominal MRI results will be in. My guess is that we will be scheduling the double mastectomy soon. I would love some encouragement about this. Though I know it is my decision, does this sound like it makes sense to you? Or would it be worth it to have the one breast removed, wait for results, and either keep or remove the other? My brain hurts and my heart kind of aches.

love you all,

p/mom

the acorn incident

This afternoon, Laura and I were in the kitchen discussing whether to remove one breast or two. I left the conversation to check the mail. A very kind friend and colleague of Laura's had left a note of encouragement on the porch. He had collected a few beautiful fall leaves and a couple of acorns, and left them near his sweet note. See attached photo. I don't think it will make or break our decision, but geez, we had to wonder if it was a sign!

It has been a long week, with six trips here and there for various procedures. We continue to feel spectacularly lucky about the bone scan. As for the funky abdominal stuff, we will know more Monday or Tuesday. It feels like a long wait, again. We are tired. Now the other breast may need an MRI-assisted biopsy. Blah blah blah. Diagnosis day, 4 days back, seems like a long time ago. Still, we are laughing much more than crying.

I am determined to experience what is happening, but not to let it touch my soul. Mostly, I feel lucky. This weekend I am going to write a letter to the hapless soul who sits somewhere in a laboratory, eating his or her sandwich while scanning mammogram films, gray pictures of flattened breasts. He or she spots the tiniest of oddities, takes another bite of sandwich, circles the dot on the film, and my life is saved. I am going to make that person's day with my letter.

Losing my breast(s) will be a deep loss to me, but I'd rather lose the acorn(s) than the tree.

love all around,

p

found my donkey

Old saying, that when God wants to make a poor man happy, he has him lose his donkey and then find it again.

Just got a call that the bone scans are CLEAR. So, welcome home, donkey! We are giving this guy fresh hay and letting him raid the refrigerator. Hep yo'sef, good donkey.

I have suddenly shifted into "breasts, schmests. I did my best tree climbing without breasts."

On the other hand:

Ultrasound tomorrow, with possible biopsy on left breast (breast, um...gee, I think left breast schmeft breast...). Then MRI to check out the CT-scan-spotted thingies on liver and kidneys, 7:15 tomorrow evening. More Michael Jackson in my head!

We are going to try to set a surgery date asap, though it is not entirely clear that one or two breasts will go.

Where'd that damned donkey wander off to? He was JUST HERE.

Fun fact: I learned that I have some arthritis on a RIB. Anyone want to explain THAT?

breasts are like ta bing dough

First and foremost, I drastically undersold my breasts in an earlier missive, and want to revise. They are no bee stings. They are the perfect large handful of ta bing dough. Each fits in my hand, spread wide, and feels as recognizable as that hand. I am really sad about the prospect of losing them.

Laura and I were like foolish children scaring themselves with ghost stories last night, who got in over their heads and ended up trying to find their way out of the forest by flashlight, each step getting scarier. We looked up pictures of breast removal and reconstruction online. No nipples, whether you "reconstruct" or not. No feeling. A friend says it's just like her foot's asleep, except it's her whole chest.

Both Laura and I cried ourselves to sleep, and woke up to cry again.

I did learn about tattooing on nipples, so we looked that up, too. Stay tuned. I suppose I could get smiley faces put on. Am open to suggestions.

Whether or not it is accurate, I will share here that I have a little theory about my vulnerability to this cancer. I think it may have to do with sleep. Go ahead, you can think (I am thinking it) that I am just looking for Reason when there may be none. But still! My ONLY physical complaint over the past few years has been my crummy menopausal sleep. The kids will attest to having had childhoods with a mom who at night becomes Sleep Czar -- I am a fierce advocate for good sleep as a means of staying happy and healthy.

Turns out that people who have higher levels of melatonin get cancer at measurably lower rates. Blind people, in the dark all the time, and who have higher melatonin levels, get cancer at greatly reduced rates (Yani -- add this to the there-are-no-blind-schizophrenics data). I have not slept well for about 2 years, and those in my immediate vicinity have heard about this with (here I apologize) great frequency. Anyway, my naturopath wants me to take 20 mg. of melatonin before bed. That's about 20 times what I have been taking. Full disclosure (as if I've not offered full enough!): it didn't help last night. But I don't think last night was a fair trial.

I am downing 3 cups of barium solution as I write this, then we're off to the hospital for the CT-scan and later this morning the bone scan.

Right now we are both okay. Urp.

once on this tumor island: first consult

11/10/09 Hi, all -- Laura and I had a long meeting with the breast doc today, and we learned some stuff about the nature of the tumor. I won't bore you with the long names and all of that. But anyway, it is on the move, and I will either need a lumpectomy or a mastectomy. Problem with the lumpectomy is two-fold -- one, the tumor is underneath the nipple, so a lumpectomy would make a real mess of me cosmetically. Also, it would need to be followed by radiation -- either whole breast (side effects and complications include lung burning, broken ribs, skin burns) or partial breast (fewer studies done on the effectiveness of this relatively new treatment). Also, there would always be the chance of the cancer's return.

Chances are that we will be removing both my bee-sting-sized (though lovely) breasts, a deep loss to me (and, less so, to Laura), but something most others won't notice. Recovery time is about a month, though since my job involves sitting and listening, I got permission (should we proceed with this) to be back at work in a couple of weeks. There would be a 1% chance of recurrence going this route.

All this is premature, I suppose, since tonight is an MRI and Thursday is a CT-scan and a bone scan. If those things unearth other "tumor islands" (can't you hear the ukelele?), we will be facing chemotherapy, a prospect I confess I dread.

All of this was a great reason to spend $150 at Whole Foods after the doctor's appointment, getting lots of raw this and organic that. Plus we've invested, at Emily Siegel's urging, in a 3-horsepower blender, which can make the high octane smoothies I will be drinking to stay as strong as I can. You can put in the avocado pit (also recommended, says Em, as a smoothie ingredient) and it will grind it to pulp. Yummmm. For me it is a mindset thing -- I am not sure that the bee pollen, say, will save me, but I know I am someone who does well with a focused approach to any task I am facing.

I am determined to keep running, for example, except when I can't, to avoid most processed sugar (not that I eat a lot of that, but I do loves my occasional ice cream dollop), and to really concentrate on being a great steward of my body. Thought I was doing that, and am stunned that these funky cells snuck in anyway. It saddens me that the great herbal concoction that my naturopath had prescribed for my rotten menopausal sleep is VERBOTEN with cancer treatment. Back to square one in the sleep department.

Here comes my 4:00 client. Time to compartmentalize.

you say you want a revolution

We just got back from a couple hours at Hartford Hospital, where I had the MRI. Only time I felt any panic at all was before the procedure, when I remembered that, at the age of 5, I swallowed a metal bell while jumping on the bed. Wouldn't THAT have been a surprise, to have that bell tear out from my insides. The technician checked with her boss to make sure that it would either have "passed" or have corroded. Once assured of this, the procedure was fine. Well, you know.

Anyway, no bell tore its way out, and I stayed as still as stone. And through all the hour of clanging and buzzing, I alternated between envisioning Michael Jackson dancing (sort of techno style) and saying to myself "breathing in, this moment; breathing out, wonderful moment." And actually there was one set of sounds that was just like the first few bars of the Beatles "Revolution" song -- you know, the guitar goes nananananannanananaNA, then John sings, "you say you want a revolution, well, you know, we all want to change the world." That kept me going for awhile. Also, I could feel Laura rubbing my pinky, which further anchored me. She has been solid as bedrock, though we both feel like we are in a bizarre dream.

We're already impatient for the call from my doctor about today's results. Won't hear until tomorrow afternoon, though. More then.