I Had A Gut Feeling AND I Felt It In My Bones

I had a gut feeling that my liver was normal, excellent, and cancer-free, and I was right. My CT scan today showed it to be just fine.

Although I am quite achy and somewhat wracked with pain, I had a feeling in my bones that my spine is just working overtime figuring out how to support me with the limited mobility in my sternum and upper ribs. I was right. Nothing but garden variety "changes" showed on the MRI of my spine.

The worst of the waiting is over. Now I just have to live my life and coast for a while, so that my body can continue to clean up the mess and heal. Maybe my creativity will return soon and I'll start writing again.

I won't be posting an entry until after my friend Carol goes home next week. Have a wonderful week, and know that I am having one too.

Waiting Stalls Creativity

I tried writing all weekend. I had the time, the spaciousness of being home without any appointments, but the words would not flow. I feel like I'm in an old car, stopped at a red light, and I keep stalling.

I am waiting again. Waiting for the next blood test later today. Waiting for the CAT scan on Tuesday. Waiting for the Stanford follow-up on Wednesday. Waiting squeezes the creative momentum out of life.

I will find a way out of this one. Unlike cancer, there is a definitive cure for waiting. Even if I do nothing, the waiting will end. But it is not like me to do nothing. Over the next 3 days I will find something that jump-starts my juices and carries me through this. What am I really waiting for anyway? My father used to warn me to be careful about being impatient when I would say things like, "I wish it was Saturday already." He didn't want me to wish my life away.

Last Friday I had an MRI of my spine which showed no spread of the cancer. Yay! The good news helped me out of my slump on Saturday afternoon, but it  was only a matter of hours before I slipped down into feeling frustration and impatience again.

On Thursday my dearest friend in the world, who I've known for 35 years is coming from New York to stay for 5 days. We will time warp and enter a parallel reality where we can delve into questions I have about my past that can only be addressed (and reality-checked) by someone who was there. And in between our intense conversation and my naps, I plan to deeply enjoy showing her the Central California coast and the redwoods.

Today, I am attempting to start my day being grateful for having slept 8 hours and having a great cup of ginger tea. I think I'm going to ditch this old car that keeps stalling and just walk. I can't control everything that happens in my life, but I can choose to mindfully walk through life and rest my attention in the sensations of being alive.

Moving In The Right Direction

I repeated my liver enzymes this week and I'm happy to discover that they are (ever so slightly) moving in the right direction. It's great that they aren't increasing. We'll monitor weekly for a while and watch patiently. Another lesson in patience, just what I need!

I am considering going to Commonweal for their week-long Cancer Help Program.
http://commonweal.org/programs/cancer-help.html
I have heard about this program for many years, and now that I find myself on "the other side" of needing help, I'm considering going. Rachel Naomi Remen (one of the co-founders of Commonweal) is one of my heroes. I admire her and her 2 great books (Kitchen Table Wisdom and My Grandfather's Blessings) tremendously. I'm wondering if any of you have direct experience with their program and would be willing to share your thoughts and feelings about it with me. If you do, please email me.

Every day continues to be different. One day I feel like I'm sliding downhill, and the next day I feel better than ever. It's a mystery, and a challenge to let go needing to know why I feel every little thing that I feel. In general, I am having more good days than difficult days. It's a trend. I am definitely moving in the right direction.

The Liver-Kidney See-Saw And The Paradox of Longing

I received a deluge of emails after yesterday’s entry asking, “Are you okay?”
Can we start with an easier question? I have, at some point in each day, an incredible array of apparently contradictory thoughts and feelings. I am all over the map.

A paradox is something that seemingly contradicts itself. Two extreme opposites might both be true. There is some magical alchemy in embracing this enigmatic tension of opposites. Something unexpected nearly always arises from the paradoxes I meet each day. My days never have just one theme or emotional texture. My days unfold with the surprising and the unforeseen.

Before my infusion yesterday I saw the oncologist, who is concerned about my pain, fatigue, and elevated liver enzymes. My kidneys calmed down and now my liver is calling. It's like they're on a see-saw, taking turns being up or down. So much for staying home and mastering “being in nothing.” Enough Zen for now! I'm scheduled for more blood tests, a CAT scan and an MRI. I know I spoke out against it, but I’m going to need to make a list. . .

. . . and then I’m listening to music, sitting on a large gym ball, lightly bouncing, making amoeba-shaped circles and figure-8s. I crawl under the covers, dive into puffed-Os and involuting wave motion for a while (Continuum folks know what I mean,) drift into a deep sleep, and have a little dream. It’s actually deeply satisfying and enjoyable. Does it really mater in the moment of bliss under the smooth sheets whether or not I have an opinion or an emotional reaction to my liver enzymes? My days are not just made of test results, pain, fatigue, and biopsies. I have my joyful moments: Steve calls unexpectedly in the middle of the day just to see how I’m doing and say, “hi”, someone calls who wants to deliver dinner, I get a massage, I sleep for almost 2 hours on the acupuncture table, I hang out at the kitchen table with Steve and Ben and Luke telling stories for an hour over breakfast, we watch a movie and laugh, I abysmally lose a game of Settler’s of Catan and bask in the teasing by my fellow "Siedlers," my brother calls and we talk for a long time about something only he and I know about, I sit on the beach and watch the clouds change shape, or someone calls from New York or Vermont or Germany to tell me it’s snowing and they are eating in one of my favorite restaurants and wishing I were there. These are just a few of the things that have delighted me in the past few days.

In my last blog entry I didn’t mean to give the impression that my life has become so dismal with nothing but misery and fatigue and futile waiting. I have blissful moments of silence and stillness too. I have stretches of time that blossom with authentic reverence for the life force expressing itself through me. I have a great appetite. I enjoy my food, and I frequently dream about eating ice cream again someday.

My earliest memory is of myself inside a chest freezer in the basement of the Philadelphia home where I was born, sitting on a stack of frozen vegetable boxes, eating out of a half-gallon-sized carton of what I then called, “cockie tzip,” chocolate chip ice cream. I was 18-months-old and already passionate about ice cream. I actually could have done without the chocolate chips. I just wanted the plain vanilla ice cream, but chocolate chip was all that was there that day. I pulled up a chair, climbed up, and reached in dangling by my waist, but could not get to it. I strained to grab the edge of the carton, but lost my balance and fell in. The freezer top stayed open, otherwise I might have suffered or died that day. My mother found me within 5 minutes, judging by how much I had eaten. I scooped the stuff up with my chubby little pink fingers and was delighted to indulge in my favorite treat, not traumatized in the least.

Now when I long for ice cream I derail my desire by reciting Rumi’s poem “Love Dogs”
     "…This longing you express is the return message.
     The grief you cry out from draws you toward union.
     Your pure sadness that wants help is the secret cup…”

Until I feel like there is wiggle room in my “nutritional chemotherapy” I will abstain. In the absence of the real stuff melting on my tongue, I will fill my secret cup with longing and drink god’s answer. Life force lives in the longing.

Waiting For Godot And A CAT Scan

In Samuel Becket's play "Waiting for Godot" Estragon mutters to Vladimir, "Nothing to be done" as he struggles to remove his boot and continues waiting for Godot, who they both admit they don't know, and wouldn't recognize if they saw. They seem to imply that "nothing is a thing that has to be done" and that they will spend all day doing it in order to "hold the terrible silence at bay." They intermittently stare into and feel inside an empty boot or hat and find nothing. There are days when I feel trapped in this theater of the absurd.

I am exhausted, trying to care for myself, my family, my home, and preserve some connection to my career while feeling pain, fatigue, and the emotional rollercoaster of my inner life. Some days, especially when I am feeling well, I am optimistic and enjoy my spacious "free time." On other days I struggle with the simplest tasks, and spend all my energy quieting the voices in my head that comment on everything past, present, and future. I struggle with "doing nothing." I can create a list of things to do that seems to temporarily keep me out of trouble and provides the brief satisfaction of crossing things off as I complete them. Am I fooling myself? Am I just holding the terrible silence at bay?

On a good day, my pain is minimal, my energy is up, and I am full of beautiful blog entries, long beach walks, and silent awe-filled meditation. I can breathe and move in my limited way with deep satisfaction... and then the "Editorial Board" as I collectively refer to the voices in my head, starts commenting on my prognosis, on my symptoms, on every little bump and brown spot on my body. I re-read a lab report and ponder the differential diagnosis. I need to be stopped. I take a breath, say to myself, "there you go again" and try to get in the bathtub or outside, even if all I can make myself do is walk to the mailbox and back.

Today started out as a difficult day, morphed into a great day, and ended on a low note, as I collapsed from exhaustion at 7:30 pm. One minute I'm crying, the next minute I'm laughing. Being with me is like being with a newborn with a rapidly changing progression of sensations and reactions. The emotions move quickly through me and can make an abrupt about-face without notice. I think of my emotions as if they are blustery weather, just passing through.

The symptoms I have now are somewhat different than what I experienced back in the summer and fall. I don't know whether to attribute how I feel to cancer or to medication side effects, but I suspect it's the combination of effects from Zometa (an inhibitor of "osteoclasts," the cells that breakdown bone) and Arimidex (an estrogen blocker). As my tumor-related bone pain improves, fatigue and muscle and joint pains not related to tumor growth have gotten much worse.

Tomorrow I have my third Zometa infusion. Luckily, I can get it right here in Santa Cruz. I don't have to drive up to Stanford. I get an IV line put in, and it takes about 30 minutes. I usually fall asleep holding my Kindle or a book while in the recliner chair in which they have you sit for chemo infusions. I feel nothing until the next day, when the intensity of what I feel has been different each time, but involves some flu-like achy state with some intestinal chaos (a nice euphemism).

The waiting is excruciating. My life has been devoted to knowing what's knowable, so I find it challenging to have to wait to find out what the next test shows. So much of what goes on inside my body is not measurable or perceptible. Being with these particular unknowns, learning how to become comfortable with the mystery, and trusting how I feel is hard work. The Editorial Board complains. When they get too rowdy, I bark, "You're Fired!" and try throwing them out of my head. Sometimes it works for a while. They always regroup and return, occasionally in a subdued style.

Like my friends Estragon and Vladimir, I wait, not sure of what I am waiting for or when it might make itself known to me. Waiting for Godot or a CAT scan isn't much different. There's nothing to be done but develop the art of being in the nothing, and give up trying to master doing nothing.

Getting A Cold, Resting, And Being In Large Font Heaven

I am recovering from my first garden-variety cold since this ordeal began. It was one of those nose-runs-like-a-faucet type colds with a lot of sneezing. Sneezing is a really bad move when you have tumors in your sternum and ribs. I don't advise it. I feel like I was kicked in the chest and ribs. Laughing is the medicine I need, but it hurts terribly to take it.

As I move into the next phase of this ordeal, I am finally having a bit more time to slow down and rest. I have had my first few days at home with no appointments and no forms to fill out. I even delivered all my tax documents to my accountant today, so that's done too. People keep asking what it's like to not be working, and I don't know what to say. Until last week, I have been busier than when I was working!

I have a huge stack of books, some of which came from some of you, and some of which I have bought. I can barely focus my eyes, let alone read. Many of my patients have seen me whip open the PDR, the book with the tiniest print on Earth, and brag about my great eyesight. My eyes never shifted in my 40s, but suddenly at 53 with the stress of living with cancer, everything is a blur. This should be my worst problem! I bought a Kindle and now I'm living in large-font heaven.