thursday

it was only a
lymph node, but it was enough
to ruin my day

The Color Pink

I have reconciled myself to the color pink. This pink. My new bike pink. The color my hair might be in a few weeks, if I can find the right shade of pink. The color of Olwyn's pink tiara I wore at my Done With Chemo Party. The Pink Brick Box my boys bought me for Mothers Day.

The bike is a new cruiser, fashioned to look like an old one. I drove past it every day on my way from school to radiation at the end of May. Finally, one day, I stopped. Test rode (this pic). Bought. No deliberation necessary.

It makes me happy to ride it. Happy to go at the speed of one speed. Happy to be a Rose Parade, with myself as the only entry. Happy to throw everything into the front basket (purchased later) and just go.

Today, I filled my basket and headed out to do some errands at about 4:00 pm. First stop, the post office, where I mailed my husband's 12-inch braid to Locks of Love. Two nights ago he let me cut it, and shave his head with the 1/2 inch attachment. Wow. He's had that hair for 20 years. Now he has hair that looks like mine.

While at the post office, I left the bike unlocked, but it was out of sight. A real lesson in trust. I only got out of line once to check on it. But I refuse to lock it up everywhere I stop, because it's impractical! Especially if I've got four or five places to get to before dinner.

Next stop: The Medicine Shoppe on Colorado Ave. I parked my bike out front (it has a kickstand!), and carried in my wallet and new scrip for Tamoxifen I had gotten from my oncologist earlier that day. While waiting, I decided to browse The Bookman. The pharmacist said the bike would be safer in front of his store, and he could watch it for me. When I came out of the bookstore and looked towards the pharmacy, my bike was nowhere to be seen! For a brief nano-second, I feared the worst. But when I looked in, there it was, parked in the middle of the pharmacy. The pharmacist had brought it in! I love my neighborhood.

I placed the bottle of pills in my basket, as well as the book I had picked up for Bennett for two bucks, and rode off towards the garden. We have a small but useful plot in the new Old Colorado City Community Garden, which is about six blocks from our house.

At the garden, I discovered new locks on the gates, and it just didn't feel quite right. They were definitely not Locks of Love. They felt like locks of exclusion. Even though we've got a deranged crazy lady roaming through, picking onions, and calling people names, that still didn't seem like reason enough to put locks on all three of the gates. Anyway, after calling Elise and getting the combo, I went in and picked some spinach and some greens, which I placed in a plastic container I had brought with me. Again, in the front basket of my unlocked bicycle. Needless to say, the salad I made for dinner, with some boiled eggs on top for protein, was second to none.

Baskets on bikes are not "cute"; they are PRACTICAL! It's so easy to just throw in what I need, and pedal out the driveway. No special shoes or dorky neon shirts with pockets in the back. I prefer skirts.

At some point in our recent history, "biking" became a sport, and not a way of life. I hate exercising, but going to the post office, the pharmacy, and the garden (I was also going to return a book to the library, but my neighbor I stopped to talk to was on her way there and said she would drop it off for me) on my new pink cruiser is just fun. I look for a reason to ride it every day.

I have a lock for it, but I lost the directions on how to set the combo. At some point, I will call the bike shop and have them help me figure it out. I will most likely use it if I park downtown and have to leave the bike for a few hours (yoga, for example). Until then, I will continue to roam the Westside lockless. With love. Like my husband.

the end

So chemo is over. Twelve infusions and 28 weeks later, I can safely say I have arrived. Still intact. A bit more fragile. A bit stronger.

I had my first experience of running into someone I hadn't seen for awhile, and giving the abridged version when she asked me how chemo went. Yeah, I was hospitalized with a neutropenic fever over Christmas break, had severe neuropathy, shingles, and lymph cording... it was hell, but I made it.

It was strange, looking back on it like that. The day was sunny, I was strolling rather happily around the neighborhood taking in the tulips, and the fuzz on my head was as downy as a newborn chick. All of the sudden, it seemed as if I had awoken from a really bad dream, the details a bit hazy.

And now to the most Frequently Asked Question That I Am Getting Tired Of Answering. It comes in various forms.

Is it all gone now?
Did they get it all?
So, there's no more cancer?

I know what they mean. They want to know if I'm going to live. And for how long. Cancer is all about "how to talk around death". I appreciate most the people who have understood that to be diagnosed with cancer is to look mortality in the face and have a serious come-to-Jesus talk.

Anyway, here's the answer, as well as I can explain it:
First, the data, from a handy computer program that takes into account your age, general health, size and grade of tumor, and number of lymph nodes affected: With no treatment except surgery, I would have had a 62% chance of being alive with no recurrence in ten years. With chemo, it brought it up to 82%. If I choose to take Tamoxifen, it will bring that up to an 88% chance of seeing the year 2019. Chemotherapy doesn't "get it all". It gets about 99.9% of any cancer cells that might have leaked out of the tumor into my lymph system. It only takes one rogue cell, traveling around and deciding to lodge itself in my bones or lungs or liver X number of years in the future, for the cancer to return. There are no guarantees. It will never be "all gone".

I am an idealist at heart, yes. I see the bright side of just about every godddamn problem there is. I believe the best about everyone. Pollyanna should have been my middle name. If I had to, I could find something positive to say about cat poop!

But that doesn't take away the fact that there's a 12% chance that I won't see my youngest son off to college. You see, this is where cancer takes your mind in the darkness. It's not to be dwelt upon, but it is also not to be ignored.

When one is in the middle of treatment, there is focus, purpose, a singular task. Now that I have been released from chemo and have more decisions to make (more on that later), I find myself in a strange tormented limbo once again.

barb spencer

difficult problems
in full bloom
through seasons of sweat and chill
a breakthrough may only be a small step away
all in good time
you can count
on
the power
of
God
to
ease the
experience
day be day,
finally,
you win.



1997-1998.....In my second year of teaching sixth grade at Carmel Middle School, I was working with an amazing team of teachers. There were three of us. We all taught a Reading/Language Arts Block, and then the kids rotated through for Social Studies (me), Math (Lisa), and Science (Barb). In February of that year, Barb informed us that her breast cancer had returned, and she would be undergoing intense treatment for the rest of the school year. She would be taking the rest of the year off. For two young teachers, the news was hard; for our kids, it was devastating. Somehow, we made it through to the end of the school year, having lost a teacher the kids loved, and having to make due with a substitute they could barely tolerate.

Over Spring Break that year, I made Barb a journal. For the cover, I cut out various pictures and phrases from magazines, and arranged them together with some homemade paper I had left over from the days when I made homemade paper. She told me that it would be her gratitude journal.

In September of this year, after my breast cancer diagnosis, Barb returned that journal cover to me. She had somehow cut if off of hers, and glued it onto the cover of another. I take it with me to every doctor appointment, jotting down notes, unfamiliar words, statistics, observations of waiting rooms, phone numbers, and occasionally, things for which I am grateful.

Today, I am grateful for a found poem.

number 12

Today, 4/20/09, at 4:20 PM, the IV machine beep-beeped for the last time. I thought I would cry, but I didn't. The boys were all there, I had had a good two-hour nap in the chair, and I just wanted the hell out at that point. I told the nurses no offense, but I never wanted to see them again. (I'm sure they've never heard THAT one before!)

When John and I arrived this morning at 9:15 AM, I was weepy without end. Brownie, 92-year-old Brownie, who volunteers in oncology, who brings me warm blankets and hot lunch and cold applesauce, and, when asked the secret to a long life doesn't hesitate when she answers: "I guess I just don't worry very much"....... anyway, Brownie was the first to say good morning, and unfortunately she got the brunt of my didn't-get-enough-sleep-last-night tears.

Gunda took my weight and blood pressure, and Susan drew my blood. That hour and a half wait for the lab reports was one of the longest of my life. Luckily, all was well, and my twelfth chemo infusion was under way. After some IV Pepcid, steroid, and Benadryl, the last bag of Taxol was hung. At that point, I knew that freedom from having my port poked was a mere three hours away. I slept through most of it, thanks to the Benadryl.

I became particularly close to one nurse, Anne. She was the witness to several of my breakdowns, as well as the one who broke the news to me that Matt, a 20-something young man I sat next to on occasion, had died. When she hugged me on the way out today, I did shed a few tears, and told her that I couldn't have done it without her.

That evening, Grant, Bennett, John, and I ate sopapillas from La Casita and drank Ibarra Mexican Hot Chocolate around the fire pit, each making a little celebratory, ceremonial toast. Then Grant and Bennett light sabered around the backyard. How I love watching them become Jedi in their minds and bodies and souls. It was after 9 PM before we finally came in; if you know me, letting my kids stay up that late on a school night is virtually unheard of! But I've learned a lot, and one of the things I've learned is that special events allow us all to break the rules. I've also learned how easy it is to take a sick day (thanks Klayton and Suzanne!), and that I should do it more often.

So I've come to end of this chapter, and am going to close the book for awhile. There will be more..... radiation, hormone therapy, lab tests for ever and ever, but I'm letting all that go for now. At least for the couple three weeks until radiation begins.

For now, here's a toast to 82%! According the stats, I have an 82% chance of living 10 years with no relapse. I'm going to make sure and take Brownie's advice, and not worry about the other 18%!

At about 9:15 PM, 12 hours after arriving in oncology this morning, we popped the final balloon:

penalty

The most common question asked by well-meaning friends is, "How much longer?" or sometimes it's, "When are you going to be done?" They mean treatment, of course, but my brain always turns to the long haul, the forever, because you're never done fighting, once you have cancer.



As for the treatment, I am sick and tired of not knowing the answer to those questions. There are too many uncontrollable variables. This time, it was my liver. Yesterday, it threw me a "delay of game" penalty. I arrived at oncology with my sister-in-law Gwen (all the way from Ithaca, NY), mentally prepared and with a bag full of diversions. I was ready for round number nine, only to be told that my chemotherapy appointment had been canceled, and.... "Didn't anyone call you?"

No! They didn't!

My brother and family are visiting from New York! It's a holiday! Everyone else is skiing! I could have gone too! Why didn't anyone call me Friday to tell me my lab results!? (After I had calmed down a bit, I apologized to all the other chemo patients for my outburst, which I'm sure contained many a swear word.)

So Gwen and I headed up to Monarch on a bluebird day to join my brother, my husband, my niece, and my sons, for a day (half-day by the time we arrived) of skiing and then relaxing at Mt. Princeton Hot Springs. Was it better than sitting in the chemo chair all day? In the words of my 9-going-on-13-year-old son, "Well, duh!"

But would I rather have been in the chair with blood poison number nine?

"Well, duh!"

all things considered

They may simply look like bottles and pills to you, but to me, they have become a life-saving ritual.

Every morning and evening, the same. Swallow 21 pills. (For those of you watching the numbers, that's 42 a day, my age... again) Then there's the flaxseed-grinding, the smoothie-blending, the green-drinking, and the tincture-swilling.

The natural-colored herbal gel caps are from my neighborhood witch. The unnatural-colored yellow pills are from my oncologist. I used to house them in different places in my kitchen, until I realized that they all belonged together.
What's inside all those gel caps, you ask? Here's a sampling of some of their exotic and everyday ingredients:

Manchurian spikenard
Turmeric
Quercetin
Luo han gou
Indian Gooseberry
Boron
Vanadium
Goat weed
Vitamin B6
Royal jelly
Korean ginseng
Suma
Rosemary
Ashwagandha
Black pepper
Cordyceps mushroom
Eleuthero root and leaf
Japanese Knotweed
Licorice
Holy Basil
Bromelain
Creatnine
Chromium

In addition to swallowing all those pills, Heide also has me drinking a green concoction composed of brussel sprouts and kale and cabbage and spinach. It's lemon-lime flavored. Really. The smoothie protein powder she gives me contains (gasp!) colostrum! (It's from cows, not humans, of course, but still... weird.)

The yellow ones you see are prescribed Potassium and Protonix. And then there are the toughest and cruelest of them all, the ones you can't see here, the chemo drugs: Adriamycin, Cytoxin, Taxol.

The way I look at it, I've got to use everything under the sun available to me.

As a teacher, I've drawn from diverse sources: ITIP, Kagan, Love and Logic.

But those are all systems; it's the people, of course, that have had the most influence on who I am as a teacher.

I have had many guiding forces, from my nazi-like advisor when I was a student teacher, to my paternal first grade teacher, and many more in between. Mrs. Phelps (advisor) taught me how to direct instruct and maintain discipline, and kept her kids loving her and learning much with a strange but effective mix of toughness and love. Mostly, she demonstrated the self-sacrifice and hard work it takes to make sure every single kid "gets it". Mr. Witham (first grade teacher) allowed me to call him "daddy" (my parents were recently divorced), told fractured fairy tales from his imagination before they were popular in books, and made everyone feel safe. I can't remember a word of criticism ever leaving his lips. (My mother sent me his obituary when I was 24 and in my first year of teaching. When I read that he had died of AIDS, I cried like a baby).

I believe what makes me such a great teacher (humble, too, aren't I?) is that I draw upon a variety of teaching techniques and influences, as long as they feel mostly true to me. If it works, use it! We get so bogged down in the "right way" of teaching or parenting or medicating that we lose sight of the ultimate goal. And as every parent knows..... every child is different. As every doctor knows.... every patient is different. What works for one might not necessarily works for another.

I guess that's why I instinctively mistrust parenting experts, politicians, priests and educational consultants (yes, especially them..... and their publishing companies). They are only selling one product, it's the answer, and you have to believe in it. Period.

I don't buy it. And so my arsenal of healing includes it all. Chemo, pills, tinctures, MRI's, EKG's, plants from around the world, yoga, flaxseed, and $5,000 shots of Neulasta.

All things considered, the most important factor, I suppose, just like in teaching, is the people. That'd be you. Thanks for being a part of my treatment plan!

for swiss miss

As I lie on my back clothed in yet another paper gown, I stare at this man sitting on the stool next to me. I voice my feelings, for some reason, out loud to him: "You know, I actually WANT you to find something wrong... Isn't that strange?"

"No, not at all. You want it to be wrong, just not wrong wrong."

Exactly. I want an explanation, a reason, a diagnosis. I just don't want it to interfere with, you know, like, the rest of my life.

What I want him to answer for me is WHY, a day after my first Taxol chemotherapy infusion on January 5th, the tips of my fingers were so agonizingly painful that I could neither sleep nor pull up the happiness-inducing-flowery-over-the-knee socks sent to me by Cindy. You know the tingling in your fingers as they just begin to warm after the bitter cold? Or the momentary pain when one of your extremities has fallen asleep and is just beginning to awaken? It was like that, in all 10 of my phelanges, only it raged on nonstop for nearly 48 hours. Everyday activities were next to impossible: holding a pencil, turning a key, buttoning a blouse. Over the past two weeks it has subsided, and there now remains only a faint sensation, reminding me that I can't quite trust my finger tips the way I used to.

And so I was released from reporting to poison chair duty last Monday. It was, at that time, a huge relief. My oncologist sent me to another doctor, a neurologist, who ordered some tests to be performed by yet another doctor the next day. Their task is to find out if I have inherited CMT2 from my father, which may explain my reaction, and to generally assess the state of my nerves.

When I first enter the room, I am surprised by the tiny machine sitting along the wall. It's the size, shape, and color (baby poop beige) of a computer from the beginning of the computer age. It looks like a hand-me-down you would have found in a Boys and Girls Club 15 years ago. Four heavy-duty black knobs adorn the front. I realize that two weeks ago, my fingers would not have been able to turn them. Along the right hand side, assorted electrical cords in different colors are dangling like instruments of torture.

I put on the aformentioned gown, and sit, as comfortably as is humanly possible in a giant paper napkin, on the table.

And then the doc walks in. Jesus Christ! He fucking MATCHES his machine!

Short, balding, a combover complete with graying sideburns and a graying mustache. The blues of his striped oxford clash horrifically with the blues of his too-short whale tie. He reminds me of a man my mother might have dated in 1975 when I was eight. He is uncomfortable in his own body, uncomfortable with mine, but happy while squinting in front of his little machine and pinching the little electrical wires between his fingers.

I wonder, as he shocks the sensory and motor nerves of my arm and leg into spasms with little bolts of electricity, if he enjoys his job. Wonder what kind of pervert becomes a doctor who enjoys shocking people with ancient technology? I'm willing to bet he played Operation as a boy and got some sort of perverse pleasure when his tweezers didn't quite make it out safely. ZAP! He probably took apart the family's AM radio, just to look at the circuitry.

To take my mind off the fact that (ZAP!) this anachronistic man is attaching electrodes to my extremities and making my body convulse in a way that is completely out of my control, I stare at the ceiling. My mind floats back to all the (ZAP!) other machines (ZAP!) I have encountered over the past six months: the new digital mammogram, the ultrasound that guided the needle to the tumor, the MRI with its strangely melodic hums and whirs, Lynn's radiation laser monster, the beep-beep of the IV when the chemo was all dripped out. Then a small tear forms and (ZAP!) threatens to escape, because I am imagining the rest (ZAP!) of my life filled with the pricks of needles and the noises of machines.

And so, to take my mind off my uncertain future, I begin to count the little squares of the heater vent directly above my head. (I used to count lights and lines and pews and people in church as a girl to keep me occupied during the service; I think counting must be my own personal religious practice). There is nothing else in the room on which to fix my gaze. No pretty tulips, no inspirational messages, not even any comforting diplomas. The walls and ceiling are bare, the same color as the little bald man's electricity machine.

Eighteen squares across. That was easy. (ZAP!) The length, however, proves to be a bit more difficult, because me eyes are blurry from the tears, which are as automatic and as uncontrollable as my fingers and toes are at the moment. I begin counting, but have to blink, and lose my place in the cold gray metal, which I think must be as old as the doctor, as old as his machine, as old as I feel. I start over again. Blink. (ZAP!) Lose my place. Begin again. Keep my place this time. Keep counting. 42! My age. I don't believe it, so I start over. This time I am successful on the first try, having mastered the technique of holding my place while blinking through tears. It's a skill I realize would come in handy in so many other areas of my life. 42 again. Yes. Something about that just makes it all ok all of a sudden.

In the end, he finds nothing wrong. But, as he reminds me, that doesn't necessarily mean there's nothing wrong. Damn stupid inclusive fucking test bullshit! He explains in metaphors (all good docs do): "It's like if you have a water pipe, and it's only slightly clogged, the water still runs through it. We're testing the water flow, not looking inside the pipes."

So I still have my nerves, at least 90% of them anyway. They still sense and feel and conduct and react. But the Taxol did something to me that day. Something unexplainable. Something excruciating.

After I was dressed, the 1970's doctor with the 1970's machine handed me a copy of my report and explained that, from his findings anyway, he saw no reason to discontinue the Taxol. In short, there was nothing "wrong wrong". I think I am glad about this. Don't get me wrong, being 100% finished would have been nice. But in so many more ways, having to quit now would be, not just wrong, but "wrong wrong". I CHOSE to do this. I want to finish it. I want to be able to live my life, after cancer, knowing that I did everything within my power to make it leave me the fuck alone. I have finally learned, after surviving the hospital and reading this book, that ten more weeks of my life filled with chemo is not something I can't handle.

I've wanted to quit before. After three treatments, at one-fourth (a million years ago) I sobbed inconsolably for hours one night, wailing to my husband that I couldn't do it, this chemo thing. Now that I'm on the other other side of one-half, with the end in sight and 5/12 remaining, and they're telling me I might be done, I find myself, ironically but understandably, wanting it MORE!

I don't know what my oncologist, the dear Dr. Hoyer, into whose hands I have placed so much faith, will say when I see him a week from today. Whether or not he will want to "re-challenge" me with the Taxol or not. I have a feeling he will, as he has done from the beginning, lay all the facts on the table and let me decide. If he does...... bring it on, I say. Bring it fucking ON!





PS. Funny thing is, in order to write this post, I also went, in the words of Marc, "back to analog form". My beloved MacBook was in the process of being repaired, and I was forced to put pen to paper. While writing the above words, I was sitting on a patio on a nearly 70-degree January day, sipping Cuban coffee, stripped down to a tanktop and exposing my bald head to the glorious sunshine. Totally worth it. Sometimes you have to go backwards, in order to go forwards.

when does 7/12 equal 100%?

I hate fractions. I tell my adult students that there really is no reason to know how to add, subtract, multiply, or divide fractions if you know how to change those fractions into decimals. I still believe this. But what I have learned over the past few months is that thinking in fractions can be very natural, and more comforting, for some reason, than a decimal or a percent.

Back in October, twelve chemotherapy infusions were staring me in the face.


I wish I had had these balloons when I started, but I didn't actually get them until I was nearly half-way. They arrived from Denver in December. Of all the gifts I have received (all the food, all the cards, all the emails, all the books....), THIS has got to be the greatest one so far. Twelve balloons in a packet, complete with instructions. Instructions that took into account my children, and their need to be involved. The boys and I blew, numbered, and taped. Together. Then we popped.


Ever since October, I have been counting in fractions. One-twelfth done. Then one-sixth. One-fourth. One-third. Five-twelfths. One half. All this counting brings me to where I am now: seven-twelfths.

The bright colors make me happy. Bumping into them as I walk through the door reminds me that I CAN, indeed, do this thing. Finish it out.

Only now I may not have to. I'll let you know more after I see the doc tomorrow. But it seems that seven-twelfths may, indeed, be 100% for me.