Letting Go: From 3rd-4th cycles of the Mo

I've been thinking about a blog post I wrote in July. I quoted something I read that another women battling cancer wrote about to describe her experience with chemo. From “Zero Circle” by Rumi, the 13th Century Turkish poet. "The following stanza and Roger Housden’s commentary so perfectly summed up my chemo experience thus far that I felt compelled to post it. From now on, if anyone asks me what chemo feels like, I will point them to this poem. "Be helpless, dumbfounded, Unable to say yes or no, Then a stretcher will come from grace to gather us up." Housden writes: "When we fall utterly, something gathers us up. But our falling must be without reservation, without expectation, without hope, though not hopeless. You can’t plan for that kind of falling. When you abandon yourself utterly to life, the river will flow and the log jam will free. Impossible is another word for grace. Who would have thought it, life takes another turn, and you are gathered up into a whole different way of seeing and being. You are, I am, that we can be sure of, and only that. Falling without either inflation or false humility into our own light." And I wrote this about it then "with that beautiful reminder, I surrender, letting go of my plan, my frustration, my fear and abandon myself to this next impossible stage called chemo full of grace, humility and light." 3rd Mo 10/15 ...still a bit of hair and a smile on my face with my #1 joy fluffer by my side. When I was first reflecting on that poem and the commentary in July, I hadn't yet begun chemo. I was attempting to relie myself from the fear and anxiety of what I couldn't fathom: Leaving my beloved school, starting a new job in a different position and doing chemotherapy all at the same time. Now, that I've had my 4th cycle of chemo 11/5. I know exactly what chemo feels like...

4th MO 11/5 am & pm Physically, chemo feels like an ongoing hangover, or a bad flu that doesn't entirely go away, and returns with a vengeance every 21 days. Hot sweats, cold chills, headache, nausea, body aches, bloody noses and stools and no energy...generally. But I take medicine and supplements to manage most of that, and no periods and no body hair to shave are both a bonus side effect. What's difficult is that I'm now into the phase called neurotoxicity (http://en.wikipedia.org/wiki/Neurotoxicity). I have neoropathy; burning and tingling in my arms, hands, legs and feet; like having a sunburn on the inside of your skin. Most of the time it just feels like cold, numb toes and fingertips. My eyes pulse from spasms in my optic nerve making it difficult to read and focus. But the worse part effects my brain function, I'm losing short term memory and ability to focus. I'm confused easily because I'm only following about a third of what's being said, and I stumble allot, losing my balance and hand-eye coordination. Multi-tasking is impossible! And though none of this seems graceful, even if quite comical and hilarious at times. The care and support I've recieved from Dr. Spike, my nurses (certified and uncertified) is nothing short of grace. 11/6 am & pm Mentally, chemo feels like I'm playing a softball game in a heavy fog bank. I know what it takes to win, REALLY! Even in the worst playing conditions! I have years of experience, an outstanding record with many BIG wins and few losses. Early in my career, I was named "Rookie of the year" and have earned many titles as an MVP since. These days, I absolutely have the winning attitude; will, determination and positivity. Though my physical limitations have taken a toll on my confidence. I'm heavily dependent on my teammates; waiting around for one of them to call out my name with directions and wait to catch a glimpse of the ball through the dense fog. I hold my glove out in front of me moving nervously, uncertain on the field, not able to see a thing. Only hearing my teammates call out commands, occasionally I spot the ball out of the fog bank seconds before the play and hear the umpire call 'out' or 'safe' and the crowd cheers and groans 'yay...awwww.' Mostly, when it's my turn at bat, I just listen to the crowd, and blindly swing my bat; praying the ball doesn't hit me. "Strike 1,2,3...you're out!" I sigh relief, and feel my way back to the dugout. Occasionally, I swing the bat in the fog and make contact, running through the fog full speed towards bases...I hear my teammates cheer 'go Ally, go' until I run directly into a defender at full speed. I hear the crowd 'yayyy...ouch!'. And I'm sprawled out on the field paralyzed. My teammates pick me up, brushing me off and asking if I'm okay. Exhausted, beat up and confused; I go back to the dugout sometimes thinking I should just sit the rest of the innings out. Earlier this year, I thought I was in control of the game; a star athlete, quick to respond and make the plays. Whatever team I played on was the winning team, even when we were down, I knew what it took to make a comeback and was always able to step up and rally the team. My teammates depended on me. I practiced long hours and I played hard; I played to win. I love the game, and am so grateful to be at the game, even if just to sit in the dugout and cheer from the sidelines for now. This analogy was a gift from one of my mentors, who knows first hand what I'm going through; Terrified, uncertain, frustrated, depressed AS WELL AS grateful, hopeful, inspired and humbled. 11/7 3 sec. neulasta shot in the stomach, $3k. Emotionally, chemo feels like surfing for me. It's so much work. Exhausted from paddling my body weight (which isn't that much these days, but neither is my strength and stamina)100's of yards out to the breaks where the earth and moon work together to move the sea. Then paddling more; faster and harder working with all of my courage, will and determination to catch the wave, feeling the timing and then thrusting my body weight up out of the water, with feet on the board, quickly finding my balance. These days, 5 out of 10 times, I don't even get up enough speed to catch the wave, and run out of energy quickly. So, I do whatever I can to just stay on the board and not fall off. The other half of those 10 times I catch the wave, but can't pull myself up in time or lose my balance and wipe out. When I wipe out...it can be quite terrifying. It's disorienting, falling into the ocean, and being pulled down under so deep at times I can't tell up from down. Or getting smacked on the head with my board as I fall. Sometimes I take in so much salt water that I feel like I'm going to drown. And when it happens, I push the salt water and air out of my lungs, frantically chasing the bubbles to the surface where I bob and gasp, grabbing for my board to clutch onto. Usually, after a wipe out, I take time to recover. I don't go back out for the next wave. Instead, I pull myself up on my board entirely, resting my head on my hands, and just gently float until I feel, quiet, centered and calm again. Actually, my last surfing trip was mostly doing this. Just being in the ocean, by myself, allowing the waves to gently rock me, instead of trying to be on top of them. I never was able to catch a wave fully and there were many moments I just surrendered my tears, my hopes and fears to the ocean. Not trying to be a surfer, riding the waves feeling the thrill of overcoming the challenge. Surrendering, accepting my limitations, allowing myself to be as I am, being rocked gently in the ocean.

11/8 Dehydrated, and overcome with side effects...I spent the next 4 days in the ER, in bed and back to the infusion center. "Be helpless, dumbfounded, Unable to say yes or no, Then a stretcher will come from grace to gather us up." Many stretchers from grace came that week. Jason, stayed with me 6 1/2 hrs. in the ER...so sick, so dizzy, I could barely walk, slumped over on a curb dry-heaving, he scooped me up and carried me. Until the next stretcher came from grace, Lori, stayed with me, laying by my side through an awful restless night. Then morning finally came, and another stretcher came from grace, Miche, then Shawn...all in bed with me, making me laugh, feeding me soup and goldfish until I was asleep once again. Sleeping and awakening to yet another stretcher from grace; Margaret, knowing I'd just spent 4 days laying in pajamas soaked in chemo (literally)...got me up out of bed and into the shower. Then, Spike came, and I was gathered up. Having fallen utterly, without reservation, expectation, hope but not hopeless...I was still dehydrated and weak, abandoning myself to life as it was now. 11/12, back at St. Mary's infusion center, yet again, for more fluids and different nausea drugs. After another long day, I was greeted at my front door by one of my Directors from PartnersSI and her beautiful daughter with hugs, a card and flowers from my colleagues with yet another stretcher from grace, and cheers from my teammates calling me out of the dugout and back into the game for a few more innings. Margaret's Mama Jan passed 10/22 after a very brief and difficult battle with cancer. Diagnosed in August with stage 4 pancreatic cancer. Mama Jan, thank you for your courageous fight, love and light...that lives on in the Belton clan and beyond. Rest in peace.

Jan was the 3rd battle lost with cancer in my circle in a month. Each one, a huge crashing wave, wiping me and many of those around me out. Our living room table has become an alter over the last six months. If you notice, in the last 3 pictures, the flowers from my colleagues, the candle for Jan and Brian surrounded by the medicine Buddha from Suzette, the match box with the Walt Whitman quote "Every moment of light and dark is a miracle." there for Miche. The healing stones from Hannalei, Kauai resting atop of a card from NHA with the memorial program for Ranada and the paper with Jan's birth name & angel pin I received from one of my oncology nurses when I began chemotherapy. The names and articles have changed now, being passed along so many times in such a short period of time. I look at the living room table everyday now, mindful of how quickly life rushes by, needing to stop, notice and appreciate every moment.

I've had many great occasions and visits from loved ones near and far over the last two months, too. Just before Halloween, my dear friend Jen Childress and her fabulous partner Jenny came for a visit from Burlington, Vermont! Jen and I were TFA teachers in Chicago in 2003! My buddy from SPA, Denise Rodriguez- soon to be founding principal of KIPP Generations HS in Houston, TX, also came for a visit! We spent Halloween weekend together and made a spooky appearance at Gilbert's pure evil party with Sailor and Betty Paige zombies(Krista & Gilda) and us 3 as zombified Quin Fabray, Mercedes and Sue Sylvester from Glee!

Our beloved Giants won the World Series!!! Fear the beard! Yet another reason to love SF!!!

We've had the most incredible fall weather, gorgeous sunny days, brilliant sunsets and bountiful harvests of food, wine and friendships...So much to be thankful for!

What's next? Well, because the 4th cycle of chemo hit me so hard (I've still not recovered from it), they pushed back my 5th cycle of chemo, which was supposed to happen the day after Thanksgiving to now scheduled for 12/1. There has been much discussion by my doctors, nurses, Spike and I about whether or not the neurotoxicity could cause lasting damage if I continue through the last two cycles, and there are no formal studies that are able to show substantial probability either way. There are, however, substantial clinical studies that show effectiveness of TCH (the kind of chemotherapy I'm getting) after 6 cycles promising 10-20% chance of recurrence, but none that show effectiveness after only completing 4 cycles. I've never been a gambler, but I do believe in research and my bodies own ability to regenerate and heal. So, I'm staying here for now, on this stretcher of grace, in the dugout, floating on the waves...a "chemo burrito - Ole!" 11/24 More fluids, medicine, contemplation...Letting go. "When we fall utterly, something gathers us up. But our falling must be without reservation, without expectation, without hope, though not hopeless. You can’t plan for that kind of falling. When you abandon yourself utterly to life, the river will flow and the log jam will free. Impossible is another word for grace. Who would have thought it, life takes another turn, and you are gathered up into a whole different way of seeing and being. You are, I am, that we can be sure of, and only that. Falling without either inflation or false humility into our own light." And I wrote this about it then "with that beautiful reminder, I surrender, letting go of my plan, my frustration, my fear and abandon myself to this next impossible stage called LIFE full of grace, humility and light."

Looking forward to completing my 5th cycle of chemo 12/1, Delivering Happiness Town Hall on 12/2 (http://www.meetup.com/Delivering-Happiness-Town-Hall/calendar/15369970/), NHA x-mas party on 12/4, bringing home the Eurovan Camper on 12/10 and my final cycle of chemo 12/22 !

Yes! I am the nerdy kid who was deprived of camping growing up, and determined that my "dream car" would be a vw camper! Yeehaw!

Can't remember if I sent this around before, but in case you didn't see it...my beloved school, New Highland Academy, was featured in the Oakland Tribune as a successful public school turnaround story; words of wisdom from the one and only Ms. Simmons revealing the secrets to our success! Woot!!! Woot!!! Go NHA!!! (http://www.insidebayarea.com/news/ci_16066092?source=email)