Settle down there, stomach!

Whoa! I have been a living experiment of ways in which to how the immune system works. Blow it out the nose, poop it out, or burn it out in a firestorm of fever. I finally succumbed to pharmaceuticals, and got some ciproflaxin. I think I might have dysentery, I may be inflating my health issues, but it´s a bit exciting to move beyond mere traveler´s diarrhea to cramps and fever. So unfortunately, this last week or so has mostly been trying to rest and eat. I have had a few adventures and misadventures, but even on scaled-down days there is always some Peruvian who wants to chat or shoot pool or something. I am still in Huaraz, sort of wanting to move on and just see more and also not wanting to lost my acclimatization. Thus, I remain at the edge of the mountains, looking at them wistfully, so close yet so large and brutal. The plan for the week is to do a trek around Alpamayo, starting on Friday and should be gone for a good 6 days or so. It is supposed to be one of the world´s most beautiful peaks. Blogging is odd and I think I´ve reached the self-conscious stage of this post so I´ll sign off...

What the @#${??!!??

Nooooo.....I can't believe it the Cubs are out! What happened? I leave the country for a little while and oy, what a let down! Of course there's always the ol' misery and heartache lore for cub's fans to fall back on, i.e. that's what life is like for a cub's fan, shouldn't of gotten your hopes now, youngster.

Here's a hola from Peru: I am sitting in the chilly hostel typing away. Lima has been an abrupt experience, that may have arisen from the fact that I've been living in palookaville for the last few months and the intensity of the city seems otherworldly. There is so much noise, dust and commotion. If I gave the city more time, I'm sure there are places that I would love. Right now, it just seems hard, so tomorrow I am off to Huaraz an 8 hour bus ride north. I have had interesting times, spent yesterday being led around the city by a schoolteacher who talked non-stop. We had a lovely meal of baby goat! It was the leg I think and very delicious, it came with some flavorful white beans and a subtle but well flavored rice. I have been waging a battle with an infection and I think I may have won, floating along in a sea of constant hydration and very few public restrooms. I can't wait to see some natural beauty, the city has been shrouded in gray.

So Mom, keep me up-to-date, okay? I am counting on your blogs to know what is happening and if Dad wants to blog too that would be excellent.

And the home of the brave ...

Iv'e not been able to blog lately - the reason? Fear! I have come to the harsh but unavoidable conclusion that I am not a brave person - whew - thought I was, but no. I've always told myself "There are different kinds of courage - physical, moral, emotional ... okay so I don't like downhill skiing - doesn't mean I don't have other braveries!" But I fear (haha) that's not true. This disease is sooo fearsome that I often can't face talking, writing, thinking about it. I am so very grateful for those of you who, at those times, lend me some of your courage - my wonderful husband, daughter, steadfast friends (you know who you are beloved ones) and others of you who cheer me at work - perhaps unbeknownst to yourselves! I'm trying to figure out if one can learn bravery. I'm open to any and all tips! In its absence, I'll contnue to work on peace, compassion, and the power of now.

A Birthday

Happy Birthday Mom, I was glad we could all get together for your 56th and celebrate with family members whom I haven't seen in far too long (Hey Uncles and Aunts and Cuz M!). Mom, I hope that you know that you are loved and that you are a joy to everybody who gets to spend time with you. Sometimes I don't want to talk about cancer either, I want to talk about how we get to spend time together, the schemes we can plot and how we can tackle this whole big, messy life that's spread out in front of us. I love the comments, thanks Wendy for your faithful readership and Dad, you gotsa a poetic way of putting things that is refreshing and beautiful.

So next month my Mom and Dad are headed to San Fran, to go to the University of California and meet with a neurological team who have a partnership with the cancer center in Eugene. I have confidence despite the OHSU blip these doctors will be welcoming. More importantly, they have access to clinical trials and can discuss options with an open mind, unlike the fatalistic approach of Dr. Nasty in Portland. It helps me to remember nothing is written and that every one's mind and boday are exquisitely unique to that person. Ah, medical science the great averager, I refuse to give up the highs and lows for a median estimation!

By the way, the Cubs are going to the playoffs, we have to go!

What a day...

Yesterday my parents came to Portland to meet with a doctor at OHSU to get a second opinion and see what kind of therapies they had going for treatment of glioblastoma. OHSU is impressive as a campus, the brick buildings, lawns and shade trees, at least until you go to the doctor's office where the smells, colors, and general medicinal qualties of sterility and blandness remind you that a hospital is a hospital is a hospital. Coming into the appointment, my parents had questions and ideas about what kind of treatment options they had read about and wanted to connect with a doctor who despite the seriousness of this type of cancer was open to being hopeful. Hope, potent and illusive, and something that doctor's are afraid of offering. Oh, the nature of our American lives, riddled with fear and skepticism, beyond religious indoctrination we could use some faith. Faith in the unknown, isn't that the definition of hope? We all feel the limitations of our rational side, the point at which the physical melts into something you can't quite pinpoint.

Back to the doctor's office: After the usual questions about the leadup to the tumor being diagnosed and what has happened since, we were shown the results of the latest MRI. Shocking to us all, was that the image on the computer showed a change, something was different from the MRI from June. It looked so small, like a smudge, I actually asked if there was a chance that it wasn't really anything, a mistake, a paperclip left on the imaging screen perhaps? Despite its insignificance to the laymen's eye, its something. It could be inflammation, it could be tumor progression, it could be both. Scary and too soon, way, way too soon. If it is tumor, then all of the treatment my mom has endured and researched has not been working against this harsh cancer. However, we don't know yet and in the meantime, how to be both realistic and hopeful without being grim or delusional. At this point, I question so much of what appears to be real, as nothing is as secure or static as it appears, were all made of jostling atoms that give us a semblace of solidity that isn't really true. Beautiful if you let go of the need for security.

Sidenote: My main gripe with neurologists, they are a literal and cool hearted lot. I understand the demands of working in such an exacting field, with crises around every corner of the cranium. That said, condescension and cavalier statements about no silver bullet, cure or new treatments need to be tempered with respect and care for the humanity of the patient.

Last note, fingers crossed, I have to have the confidence that the blip on the screen is just a reaction to the chemo.

Go Cubs go!

Yeah - the Cubbies win - 8 to 5! Five games in the lead in their division! "Go Cubs gooooo, go Cubs go - hey Chicago what-a-ya say, the Cubs are gonna win today ...." I know, Gretchen - such a cheesy song, but I don't want to talk about cancer today - it's beautiful outside, the Cubs won, we're going to friends' house for dinner - isn't life just normal? And there's the rub - not really. But for today, I'm resolved to stay in the present - there's worry enough tomorrow!

Blogging with the best!

Intro: The week and a half leading to diagnosis, were somnambolustic, drenched in unreal days, groggy and sleepy but without sleep. Everyone taking pills or drinking to sleep a few hours a night. The sweep of events from the discovery of the tumor, to the MRIs, to the day of the surgery, to the appointments with unknown agents of medicine (Doctors). Trying to keep a head above the deluge to make decisions, ask questions and pin-down doctors. It felt like we were dumped into a water slide, with high walls and no lights, the water choking us and the way terrifying, but with no escape. We just kept going.
ACT TWO:

Puppet theatre!
(Cue circus music, ba-ba-ba-da-da-da-rummpa)


Pop! A floodlight illuminates the tiny stage as red velvet curtains peel back to reveal a family tableau set against the backdrop of a doctor's office. Here sit the parents, the father flipping through an tiny issue of Sunset magazine, distractedly, the mother's anxious half-smiles flitting across her face while her eyes remain flat. The adult children occasionally try to say something clever or comforting to alleviate some of the incessant strain, that hums, buzzes and fills the silence.

The Doctor sweeps in quickly, as if he had no strings, his wake ruffling the pages of the magazines and carrying in it the company of his nurse. He is small and graceful despite being short and plump, well-groomed, middle-aged with olive skin and balding hair. He is wearing the most elegantly pointed clown shoes that have been crafted from a single piece of soft black leather, pointy enough to skewer a hot dog or clean small dusty cornes.
(As the music plays, the Doctor moves toward the center of the room, twirling into a seat at the final drum beat hits)
He turns to the family, his large dark brown eyes, contacting each person in crammed in the examination room. It is his show. The results of the biopsy.

Doctor: Hello, I see we have the whole family here. (Pause, looking around- eye contact) How are you, Cindy?

Cindy: Pretty nervous, waiting to hear the results.

Doctor: Well, I have the lab results and I'm sorry that your tumor is a glioblastoma multiforme, this is an aggressive cancer, its fatal.........

(The Doctor asks a few more questions, apologizes and as the music starts again, wheels out of the room)

End of Scene.

At this point, we've heard what we came to hear- results. Leaving things in the hands of cancer doctors was both necessary and unacceptable. The approach to health and the body chained to an interpretation of life through an sterile lens. Instinctually, talking, we all knew there is so much more. Up next: As my mom said, "Holy holistics, hope!"

Oh Yeah - That Positive Thing

So all pumped up from my first posting, I find that I promised to blog on some positive manifestations of having brain cancer - what was I thinking? I should have done it right then in my blog-o-phoria of the moment - ah well. The thing is that it's true that having cancer is the proverbial roller coaster - mostly self-propelled! Climbing that steep slope for a glimpse of the top is a matter of continual mental iterations - "I need to recount my blessings, my advantages." They are:

• Having a wonderfully supportive family
• Being in otherwise good health
• Having a great employer and health insurance
• Being able to afford the medical care that I choose

But now to the secret weapon in my arsenal, the serendipidous discovery of a naturopathic oncologist right here in Eugene - one of only 29 in the country - and this due to Gretchen's wandering around downtown one day in a giant funk and spotting the small storefront that said Clinic of Natural Medicine. She told the receptionist about my cancer and asked if anyone there could help - her response was to have me come in right away! Shortly after, I had my first meeting with Tina Kaczor, and for the first time since my diagnosis, Hope! Holy Holistics!

And now, A Revival : Springtime in three short acts

Every time I am making some progress on putting out another blog, I find that reality has gotten flipped over again, like a potato bug on its back, flailing legs thin as eyelashes to get right-side-up. Or sometimes like the keys on the keyboard have all slid onto the floor like beads from a broken necklace and I'm just pounding my fingers on a plank of plastic. In any case, here are words for you! A synopsis, a breakdown, a holy revival of the last few months in three parts:

Act One:
March 2008- Blue skies and sun touching my skin and hair like a reconciled love after a winter of cool detachment. The kind of glorious day that is golden and carefree, spending hours as if there were no end to them. I'm visiting friends in Portland and getting ready to travel. After a year of living out on the north coast of Oregon, money has been saved, a plane ticket has been bought, the jobs quit and guidebooks perused. Despite the years of vague but intense dreams about South America involving mountains, blissfully weary feet and spectacular Spanish language skills, I found that I was unconvinced I would actually go. I had confessed to a friend that in the edges of my thoughts, I was worried about my mom. She kept talking about how she couldn't seem to get over her cold and she had balance problems, as well as running into things on her right side. Not enough to create real worry, but nonetheless, something unresolved poking away at the ol' subconscious.

Getting into my car to drive back to my house in Astoria, I find that there are several messages from my mom on my cellphone, each increasingly drawn with anxiety.

• Message one: "Will you give me a call when you get a chance? There are some things that are going on that are a little strange."

• Message two: "Call me, I need to talk to you."

• Message three: "Gretchen, just call. Call as soon as you can it's important."

Sitting in the car in North Portland, panic starting to swell from the spine, threatening to explode in a cascade of morbid possibilities. In the middle of dialing my mom's number, I lose track of myself and feel I have tuned into channel 34. "These are the Day's of Our Lives.....the soap opera introduction becomes my mom's voice.

"Mom, are you okay?" I ask hearing weighty breaths on the other side of the line.

"No, I'm not." My mom responds, her voice cracking. "I have a brain tumor."

The words oh my god, come out. I am reading the script, to a ridiculous and melodramatic take on life. Next thing you know one of us will be pregnant and another hypnotized into committing 'Murder!' I think I'll play along with this, expressing words that seem appropriate to the insane conversation taking place. Unfortunately, it was true.

Mom blog 1

Well - after that stellar introduction by my beloved daughter, this is my first humble submission to our joint venture. No where to start I guess, except at the beginning. On March 5 of this year I was diagnosed with a brain tumor and, by the the 10th, had had surgery to remove it. Although the surgery was largely successful, we have come to learn that there is very little good news with this disease - it almost always comes back -and that fairlyquickly! I am now post-radiation and into my third round of chemo. We have also come to know that conventional medicine has a pretty limited arsenal against glioblastoma multiforme tumors - quite a mouthful so from here on, aka GBM! If there are some of you GBMers out there, I'd love to here from you, as support groups for those with brain tumors seem sadly absent! I've already decided to title my next blog "Serendipity", as I'm slowly coming to believe in this phenomenon I once scorned as forced coincidence. Just a little teaser about some of the positive things that have come about! I love you, Gretchen!

Hello...testing...1...2...3...

July 10, 2008- So...ahem...sending words out into the dark, bottomless sea of the internet is intimidating. I feel like I have been asked to give a toast and I can't think of anything at all to say, my lack of grace apparent in the way that I am babbling without content, slumped at the computer, pulling at my lip in hesitation and self-doubt. Okay, okay....This blog is an attempt to encapsulate, tie-down, lasso, stuff into an envelope, pin down like a biological specimen, kidnap and lock in the back of the dumpy Camry, what happened when it turned out that my mom's sinus infection was actually a malignant brain tumor.

The bottom fell out...that's what happened and there on the sidewalk was the shape of what was our lives, scattered and bruised, the paper bag that held us together, ripped. Being thrust into a medical emergency was so baffling, disillusioning and scary that my mom and I decided that we should be recording the experience somehow. Partly to connect with other people and partly to try and digest it ourselves. I can only speak for myself, ultimately this is my mom's experience and I will let her speak for herself. However, I've decided that I would try to be unguarded and honest about it all. Gut spilling, slander and maybe a few hyperboles, wouldn't be a proper blog without them, right?

So this is a flippant tone to begin with, but I'm just warming up...