"How astonishingly (here I must premise that illness, as far as I can judge in so short a time, has relieved my mind of a load of deceptive thoughts and images, and makes me perceive things in a truer light),--how astonishingly does the chance of leaving the world impress a sense of its natural beauties upon us! I think of green fields; I muse with the greatest affection on every flower I have known from my infancy--their shapes and colours are as new to me as if I had just created them with a superhuman fancy. It is because they are connected with the most thoughtless and the happiest moments of our lives. I have seen foreign flowers in hothouses, of the most beautiful nature, but I do not care a straw for them. The simple flowers of our Spring are what I want to see again."

Keats 1821

live fully or surrender

I'm feeling really down today.

I went to visit an old school friend this afternoon at his studio, which was great; I forgot how much we had in common and I've always admired his knowledge of proper clothing construction. He is the professional I wish I was. So we were catching up, and of course it was requisite that I talk about my cancers. I explained the neck surgery, the chronic pain, my medication regimen, how I really want to find a job that offers health insurance. The documentary, and how I hope it will somehow help others. All with a casual insouciance that no doubt disturbs people who don't know me well. I may as well have been talking about a paper-cut.

But under all of those flat recitations there was a tightening of my chest, my eyes started to water, I felt a pain bubbling up within myself that was definitely NOT the Thai curry I was eating. Here's the comment that did it, and if you are a cancer survivor you've heard it countless times: "Wow, you're so strong! You're such a badass! Most people can't even handle normal life stress, let alone cancer". I know, I know. Believe me, I didn't choose to be a badass, it just happened.

I always think to myself, "If you had cancer you'd have done the exact same thing", but I never say it because people unanimously reject that statement. "Oh no, I don't know what I'd do!" Let me tell you: you'd do what you need to survive, you'd bear your pain and try your best, no matter how ugly and messy it gets. Everyone has to do it at some point. Cest la vie, and shit.

I'm not a badass, I've just had some bad luck. And this is why I'm feeling down today.

I don't want any more back luck for awhile. A central struggle for me since moving here has been the fear of cancer returning, just as I've made the life-changing decision to continue on with my career aspirations. I have hip pain, I fear an Ewing's recurrence. I have ongoing digestion troubles, I fear colon cancer. After you have two primary cancers, nothing is improbable. The rain-cloud looms incessantly overhead. Sometimes it chokes me.

I am afraid only because I am happy, because I have something to lose now, and to be cancer-free seems too good to be true. My instinct is to refrain from savoring the freedom and happiness I feel due to a sinking feeling, deep inside, that I must prepare myself for the next big storm. It's a struggle to get past this.

I will close with this, from fellow cancer blogger Cara/growthandtransition, whom I've been following lately and admire greatly for her openness:

"This tiny bird reminds me, still, that Courage has a face - it doesn’t come in feats of strength, but in fear and longing, in pain... I’ve come to the conclusion that we need not differentiate circumstance, only response. One person’s measly splinter may be another’s downfall. Regardless of experience or level of pain, everyone must make a choice to live fully or surrender."

(full entry here, check her out.)

Rest not...

"...life is sweeping by; go and dare before you die. Something mighty and sublime, leave behind to conquer time."

(Goethe)

no rest for the wicked

pain status: gradually increasing aching at tumor site, lower back, and left femur. The pain has been waking me up around 1 or 2am; I can't return to sleep unless I've taken 2 percocet and smoked a bowl. I will henceforth be referring to this blog as "increasingly annoying late-onset scar tissue pain is hilarious." Make note in your bookmarks.

This quote is from one of my favorite books, Letters to a young Poet. I had it on my wall while I was going through chemo. Don't be scared, rather, appreciate the unknown.

“Have patience with everything that remains unsolved in your heart. Try to love the questions themselves. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.” -Rilke

I want to be de-cancered.

Kairol Rosenthal will be at Modern Times in the Mission next Wednesday to read from her book, Everything Changes. I will be there too, so if you are in the area, let's meet up and exchange horror stories...

My mom gifted me Everything Changes shortly after it came out. I had just finished treatment. I sifted through some of the pages thinking, "This would have been great a year ago". I wanted nothing to do with cancer, I wanted it to be solely in the past. So I put the book down and went on with my self proclaimed un-cancerous life.

But, Kariol's book is a resource for those who've already ridden the cancer roller coaster and lived to tell about it. One thing that is becoming more and more apparent is that I'll never rid myself of that death-defying thrill ride. It wasn't the cancer itself that was traumatic, it was the treatment. And, the treatment rarely cures us. It affords us more time, at the very least, and for that I am grateful.

I have been attempting to manage my chronic pain via Kaiser's services. It's slow going, with the majority of treatment lines requiring you to take weekly classes that have little to do with anything before you start the program. Once I'm past all of the red tape, I hope to learn to manage all of these nasty after-effects, both physical and psychological.

One quote in Everything Changes that perfectly encapsulated my sentiments:

"I felt like I had to fight for my right to be pain free. My Nurses made me feel like a drug addict after my bone marrow biopsy. 'Nobody else needs pain killers,' they said, all condescending. Sorry, but I'm the boss of my own body." -Dana Merk, 24

WORD!

love your suffering

You know quite well, deep within you, that there is only a single magic, a single power, a single salvation... and that is called loving. Well, then, love your suffering. Do not resist it, do not flee from it. It is your aversion that hurts, nothing else.

Thrush before the last chemo and a general malaise. Sometimes my mind forgets that I'm sick, seriously so, and calls my body to action, to the normal life, the life of errands and jobs and making other people happy. My body usually concedes until it has reached its limit, raising the white flag of fever, of aching bones. My body, my body. I must learn to listen to my body before all else.

I think of my last chemo and begin to cry, the weight of the experience is overwhelming. On one hand, I understand that millions have gone through treatment before me, I am not special, this is no big deal. This is life.

On the other, I think about the special hell that I have been banished to within my body for the past six months. The feeling of cellular betrayal, your insides crimping and dying and spasming. The daily heaving, blood coming out of every orifice, heart pounding the rest of your body into submission. The sickly smell of mesna, the many, many sleepless nights thinking about death, wondering how it feels, wondering if it will be in a hospital bed just like the hundreds you've laid in before. Wondering if it will be sooner rather than later. The incredible quiet that envelopes everything when you realize you are alone inside your body, fighting with it, dying with it.

I dare not delve any deeper, I'd rather just forget it all.

ortho surgeon consultation on May 4th. We'll decide if I need to lose a hip in addition to all of this other nonsense.

until then, last week of chemo!

Life moves on, whether we act as cowards or heroes. Life has no other discipline to impose, if we would but realize it, than to accept life unquestioningly. Everything we shut our eyes to, everything we run away from, everything we deny, denigrate or despise, serves to defeat us in the end. What seems nasty, painful, evil, can become a source of beauty, joy, and strength, if faced with an open mind. Every moment is a golden one for him who has the vision to recognize it as such. -Henry Miller

Sidonie-Gabrielle Colette

I love her.

"Like all those who never use their strength to the limit," Colette wrote, "I am hostile to those who let life burn them out."