Letting Go

"The Hardest Damn Thing in the world is to let go", my old friend David tells me.

I just cancelled all the performances I'd scheduled for the spring of 2010. I don't think I will have the energy to work full-time, rehearse a show, and expend any self care. Damn. Damn. Damn. Lance Armstrong rode marathons and Lynn Redgrave performed on Broadway while going through chemo. I am struggling to not judge myself for my reality.

I'll miss Emma Darwin and Rumi this spring. They are good people to spend time with.

Foul Weather Blogger

OK. Maybe I'm not obsessive enough about the computer to keep up with this blogging thing. Sorry I've been gone, for those of you have expressed so much care.

Or maybe I'm just a foul weather blogger. I've had weeks of fairly good recovery: learning to stabilize with my new energy level, getting back to work full time, having a ball with my physical therapist, gaining strength. The Herceptin treatments are not taking me down as much, which is encouraging. However, I can see that it's a constantly changing road

BODILY FUNCTION WARNING! READ NO FURTHER IF YOU DON'T LIKE POTTY TALK! The last few weeks have been odd due to unusually persistent diarrhea. After 16 days the diagnosis came through: I have parasites, with the sci-fi name of Blastocyte Hominis. James says, "You always did attract an unusual crowd." At least we know. I'm taking a course of antibiotics and laughing about it a lot. Weren't Blastocytes weapons on Flash Gordon, or a colony of aliens in Buckaroo Bonzai?

This week is a fundraising event at work, which seems to be going fairly well. However, I'm utterly exhausted after a day of corralling volunteers, lassoing stray details, and herding guests into table assignments. Time for some Doctor Horrible and chamomile tea.

Molasses

The Herceptin treatment is sticking with me longer than I'd expected. I spend part of each day moving through molasses. On days I can take naps & don't have to work, this is not so bad. Today it became frustrating. Will it stay this way? What happens when I add in Tamoxifen, which is also supposed to create fatigue?

What an interesting way God offers me to slow down.

On Monday, James & I celebrated part 3 of his birthday, bringing the set of Boules balls he asked for to a court along Lake Union. We played this simple French peasant lawn game as neighbors ambled the street, gulls flew overhead, waves lapped the shore nearby, the sun moved toward its bed and the moon rose next to St. Mark's Cathedral. Damn. What a good life.

Today I was fitted for my prosthetic breast in Nordstrom's while their famed pianist played live, piped into the dressing rooms: "Every move you make I'll be watching you." OK. That was truly weird.

First Treatment

Friday was my first treatment with Herceptin, a spiffy designer oncogene, custom tailored to match the HER2-neu proteins that stick out of my cancer cells. Herceptin latches onto the proteins & calls in the bouncers -- the immune system.

The hospital was running unusually late, so I didn't start my treatment until nearly 4 hours after it was scheduled. But they treat you very well: sandwiches, fruit, juices and A CUSTARD CUP. It took about 2 hours for the liquid bag of meds to drip into my system. As predicted, I felt quite flu-y after. It was weird to feel cold in the midst of Seattle's heat wave. Luckily I'd cleared my day, so went home and curled up in a shawl with a guilty-pleasure: a Hugh Grant dvd my sister sent in a box of other entertainments. The next day I needed to take a 3 hour nap, but otherwise felt fine. Future treatments are supposed to be easier. Boy, am I getting off the hook.

My little bag of clear fluid apparently costs $2000. Discovering this during my cost-estimation research had me wondering: Is this really worthwhile for the 3-5% reduced rate of recurrence I'm getting from it? More research, prayer, and reality checking: this is just what treatments cost. Accept it: my health is worth the cost of a new hybrid car or 6 months in Italy. I tell all this to Kevin, the droll nurse who sticks me. He reports that $2000 is cheap. There is a med for pregnant women with a particular blood disorder that costs $45,000/bag.

I'm getting off easy. I am surrounded by blessings. I am grateful to my toes that God & some clever people invented insurance.

Deciding To Launch

We have been watching peregrine falcons raise their chicks on a ledge 57 stories over downtown Seattle. When nearly ready to fledge (take their first flight), the young spent hours looking down, cocking their heads at all angles. "Look, there's a pigeon! Hey, that wind feels great! Boy. It's along way down." That's how it feels to consider cancer treatments.

For weeks I've been peering at all the options. Today we took to the air, agreeing upon a decision for treatment. My oncologist fully endorses it AND THERE'S NO CHEMO!! It's been a stressful decision, weighing data, side effects, desired outcomes, places where the data has no clear recommendations. Thanks to the internet and a family friend (hi Fran!) who's a medical librarian, I had lots of real science to consider. It was fun to walk in with a study, hot-off-the-presses that even my docs hadn't seen. They all wanted a copy. After sifting data, it really came down to what I was comfortable with. David B did his best Counselor Troy imitation, as sounding board and companion for the final informational meetings. At times these felt like negotiations. Next week I'll go in for baseline tests, and start the meds on the last week of July.

For those who like the nitty gritty: I'll be savoring intravenous draughts of Herceptin & nibbles of Tamoxifen. The first one addresses the HER2-neu aspect of my tumor. The second addresses the hormone receptors. Neither has highly toxic side effects. Between them, my statistical likelihood of recurrence within 10 years has been reduced to about 4%. Add in vigorous exercise 5 days a week and it dives down to 2%. I have a shiny new YMCA card: it's not as photogenic as the falcons.

For those who like bird stuff, you can read about the peregrines on the website for the Falcon Research Group, frg.org. Follow the link to the falcons who nest on the Washington Mutual Tower. We usually watch them through a spotting scope, but there's also a webcam with a much closer view. They're all gone now, but there's always next spring!

Things To Do While Waiting

1. Read. I Knew A Woman: Four Women Patients and Their Femail Caregiver by Cortney Davis. A beautiful book by a nurse practitioner, tracing a year in her life as she follows 4 patients from different stages of women's life. Davis finds the poetry within physical symptoms, and brings much affection to the dance between our bodies and our souls. This book transformed my night-before-surgery.

2. Read Sing Them Home, a new book by Stephanie Kallos, that is a great yarn, a refreshing journey of transformation, and is set in the Nebraska plains, which I'm fond of. Stevie is breath-taking, utterly concrete, and very funny.

3. Watch silly dvd's, especially Corner Gas, a Canadian series set in a small town that's kinda like Northern Exposure set in the plains.

4. Go to LOTS of 12 step meetings.

5. Do research and also know when to step away from the internet.

6. Take walks

7. Hang out with James in bed in the morning

8. Go back to work. Gently. It's great to think about other problems, for a change.

9. Hang out with friends, eating delicious food & remembering that life is really good.

10. Find every form of prayer/meditation/stress reduction that works & practice them whenever waiting seems impossible.

I'm likely to get results on the oncogyne dx test early next week, which will help determine whether chemotherapy will be helpful or not. At this point I see the oncologist and the cancer naturopath on July 14 & 16, the week when I need to make the decision about chemo. Choices will need to happen quickly at that point, so I'm trying to ask all the questions I can before hand. Alice, Jason, and David are going to help me to sort through the medical and statistical info, which I think I understand, but want to be very sure. Hooray for friends with different skill sets than mine.

Oh, I'm also waiting to hear about health insurance. My workplace is changing insurance as of July 1, and we don't have the new group number yet, so I can't determine what will be covered & what won't. This has the potential to be crazy-making. I have tested the hypothesis that I can convince the insurance company to tell me items they don't want to. Refer to #4 above.

Something FISH-y

More Medical Meetings yesterday & today: with the surgeon, Dr. Buchanan and with Dr. Rinn, the oncologist. I was a bit hasty in my last post...

My tumor tested positive for HER-2neu, an oncogene that encourages cells to grow. In 30% of breast cancers, there are too many of these oncogenes, which is why the cells over-produce. My initial test for HER-2neu was inconclusive, but the more expensive (FISH)test shows I am positive for it.

Treatment protocols are not clear for for tumors of my size (under 1 cm) that are both hormone receptive and HER-2neu postitive. On the one hand, it's a pretty small tumor. On the other hand, HER-2neu indicates a greater likelihood of re-occurrence. Dr Rinn, a sprightly woman, who is as ready to offer a smile as a statistic, is inclined toward a chemotherapy regimen combining hercepterin and taxol, while admitting that choices are not clear.

Ugh. I really wanted to avoid radiation & chemo. I was looking forward to the recovery period, instead of more treatment.

This news puts me back into the realm of gathering information: we'll try to run more diagnostics on the tissue. I'll meet with a cancer naturopath to look at a variety of options. I'll look at some more studies online. And pray. And sleep.

Pathology Report is Good

This morning at 9:15 my surgeon called, just returned from a vacation trip. Not every surgeon calls on Sunday mornings, but Dr. Buchanan knows I've been awaiting the surgical pathology report. HAPPY DANCE. They found no suprises, just the tumor that they expected, the same size and grade that was predicted. More details to follow after my meeting with her on Wednesday. The results of this report have been my one lingering concern.

The day has been a rich & long one, beginning with that call, going on to church, an afternoon journalizing in my favorite tea shop, and an hour-long reiki treatment at the center of a circle of four women. Their healing touch provides much-appreciated respite from the aches that accompany this new stage of healing. Now I'm oh so ready to head off to napland.

Goodbye Drain & Percoset

Things seem to be moving along very well. Today the drain was removed (an impressive piece of equipment -- a web 3/4" wide with holes to collect extra fluids from my tissue. It reminds me of lawncare, of tiles in Central Illinois fields). I'm usually managing discomfort with nothing more than ibuprofen. I actually stay awake for more than 2 hours at a time.

Thank you for the fabulous cards and offers of even more food! I'm probably about to contact some of you all to say yes to that. After all, when the best cooks in your life offer free food, WHY say no? Speaking of which, dinner calls, courtesy of David & Nicole.

Home Again Home Again Bloggity Blog

I've been home for 31 hours, eaten comfort food (Robin's home-made tapioca), healthy food (oh so yummy cabbage slaw with cilantro & vineagar). I've received a reiki treatment (hands-on healing) from Blair. The ritual of stripping and emptying the drain has become familiar. Naps have been blissfully plentiful. Following Dr. Buchanan's prescription, several walks a day have been injested. So far, pain has been well contained & there seems to be no bruising, which I attribute to Arnica, sublingual and in an external salve.

Your generosity of spirit and in practice is humbling, tender, inspiring, and above all comforting. I'm cohabitating with you when I open the freezer & see the food, when I smell the flowers, when I converse with you via cards and blogs, and other electronica. What a caring community. Thank you. Words are stupid and fumbling beside the deep flow of gratitude that flushes through my heart & my eyes. Through the last days, my only tears have been of thankfulness and joy.

Now, it's time to reduce the inventory of brocoli in miso-tempeh sauce, and begin the invalid's ritual of tv. I've signed up for netflix & will finally find out what WestWing is like.

Beth is home, but not blogging today.

James took Beth home from the hospital this morning, in fine shape! She's back in her stomping grounds and resting comfortably.

She won't have the energy to blog today (Friday), but she says she'll check in ASAP. Her sister Robin and friend Blair will visit this evening.

All is well!

Beth begins magnificent recovery.

Beth is doing great! She's fully alert, ate a good dinner, and has already made the transition from I.V. to oral pain medications, in preparation for going home tomorrow (Friday) morning.

She had chai tea (courtesy of her sister Robin) to wash down her Percoset, along with the home-made homeopathic remedy of slippery elm and ginger that she brought with her to the hospital.

The coolest piece of medical equipment in the room is the air compressor that periodically inflates big cuffs around the lower part of Beth's legs to boost circulation and prevent blood clots. Comfy!

Her nurse Kelly is a multitasking wonder of compassion and competence. Swedish appears to be an amazing hospital!

Beth is truly fine and will likely be blogging herself, on Friday.

Beth is alert, though "loopy"!

I had the chance to talk with Beth briefly on the phone. (She was helping me with parking, bless her!) She sounded cheerful, though tired.

When I asked her how she was, she said: "I'm more alert than I thought I would be, but I'm kind of loopy. I'm going to enjoy it!"

More later...

Surgery Successful!

James called: Beth is out of surgery, and everything went just as expected!

James is at the hospital now, and when Beth gets into her room he'll have the chance to see her.

More later!

I choose to become an Amazon

Here’s the decision, with all the technical terms for those who are technically inclined: Mastectomy with Sentinal Node Excision. No reconstruction. None of my docs expect that I will need radiation with this course of action. Chemo is clearly not needed. (Sorry, Tiim, I won’t get that “totally hot bald chick” look).

“It’s a personal decision”, a truism that I zapped past in the first hundred times I encountered it on this path. Wow. It’s really true, at this crossroad especially. Different women make different AND COMPLETELY LEGIT choices at this intersection. I have chosen this road after sorting through data, talking to women who have had mastectomies, consulting with four docs from different disciplines, and of course listening to what is true for me, for my higher power, for James. This direction made the most sense to me initially and continues to after my best attempts to be a skeptic.

Surgery will be 8:45 – 11:45 am June 4 at Swedish Hospital, under the baton of Dr. Claire Buchanan. I’ll spend the night, then take the four block ride home. Robin, my sister will be here that night, from Louisville. Wow. I’ll ask David B, my Blog alter-ego, to make a posting that night. He asks “Have you chosen your bow yet?”

I’ll make a posting later, with requests for those of you who are inclined toward the spiritual stuff.

Shoot straight.

Diagnosis & Treatment Options

Well, it’s happened. That moment from bad made-for-tv movies, from other people’s lives, from moments of borrowed despair when one thinks, “There’s something wrong. Oh my, what if I have cancer?” But you don’t.

Well, in this case, I do. Some cells in my left breast have gone awry not once, but twice. The first time was in 2007, when calcifications (small areas of dead cells that show up as dots on a mammogram) revealed abnormal cells. A lumpectomy removed a very small mass of Ductal Carcinoma in Situ, DCIS, what is termed a Stage 0 cancer. DCIS evolves into cancer in 5-18% of people. I was placed on a 6 month follow up regime. In March of this year I began to have a lot of discomfort in the area of the incision. Back for follow-up, including an MRI which my naturopath’s office heroically won through an hour of phone calls to the insurance company. The MRI revealed a suspicious mass in a different quadrant of the same breast which had previously harbored abnormalities.

Harboring. It sounds romantic, right? Harboring fugitives like Casablanca or Harriet Tubman. Nope. These are rowdy guests that come to visit and never want to go away, never follow the normal life cycle of a cell, a peaceful death. Instead they want immortality, a constant party, a mosh pit of jostling stimulation. They spill out of the apartment and into the hall: invasive ductal carcinoma (the most common kind of breast cancer). The work of the moment is escorting these bad boys out of the building and cleaning up after their party.

There is good news here: it was caught very very early. The MRI estimates the tumor is 7-8 mm. The biopsy showed it to be low grade, 4.5 on Bloom Richardson Scale (which goes from 3-9). It’s slow growing, not aggressive, and 98% hormone receptive, which makes me a candidate for lots of treatment options.

More blessings: if we’d not been following up on the DCIS, in all likeliness, this would not have been found until it was Stage 2 or 3. I have a team already assembled from 2007 – surgeon, oncologist, naturopathic support, massage therapist, counselor, and prayer warriors. I live blocks away from some of the best cancer treatment in the world. (I mean, who else do you know who has experienced a magnetically guided vacuum biopsy? Isn’t that a line from Star Trek?) And I have tremendous support – from my husband James, family, friends, and work.

At this point I’m considering two options for courses of treatment: lumpectomy with radiation or mastectomy. Next week I see a radiation oncologist, hear his recommendations, and will make a choice. Both options have been vetted by my surgeon and the cancer naturopath, who is tops in the country. Surgery is scheduled for the morning of June 4.

Some of you have asked what I may need. Thanks! To some extent, I don’t know yet. Much of my task now is tapping the energy it takes to participate in the process, to be willing to do what it takes to heal. That means plenty of rest, sunshine, balance and good food. Here are a few ideas:

• Think a good thought. If you know me, you know that I find power in prayer, meditation and touch. Send images of strength and love to me, perhaps reaching your hand to touch my left shoulder or arm.


• Cruciferous vegetable recipes! This family of veggies is presided over by grandmother cabbage and also includes brother broccoli, cousins kale and cauliflower. They are legendary for their ability to strengthen the immune system and block growth of cancers. Since 2007 I’ve aimed to eat two servings a day, but now it’s ideal if I increase that. There’s only so much coleslaw a gal can eat, so please post your favorite recipes. Cooking healthfully has been a great place to put my energy.


• Fun. I may call you up to hear a cheerful voice. Or send me silliness. Nothing political please! Just sheer play.


• Patience. I treasure hearing from you, and may not always have the wherewithall to respond.


• Save the Pink Ribbons for another occasion. The pink ribbon movement is great, but I've never cared for the color, so send them to someone who will appreciate them!

I’ll try to get postings up here to keep you in the loop, assisted by some of my A team supporters.

Aside from this, life is good & I’m healthy. James & I spent a week cross-country skiing in February. In March I premiered a new piece about Emma Darwin. I bike all around town. This is simply one more part of that imperfect beauty – life.