Local Harvest

2014 November 30 - My Billowing Cape (Lotsa Update)

Hi there,

It's been a couple of weeks since I last wrote to you all, but I think about it a lot; there are so many things my little self is trying to sift through and process - what's happening, what's worth sharing, how to make enough sense of it to actually send something worthwhile. So many confusing, upsetting (and sometimes beautiful and eye-opening) things are unfolding out in the world in this moment. Like all of you, I'm doing my best to pay close attention.

I've been back at work in the office part time for two weeks now, though last week was a short one. I was pretty nervous about going back, not really about my ability to move into the role I play at work - I'd been doing the job at home for months - but about my ability to take care of my physical self, my changed physical self, out in the world on an everyday basis. What if I was too tired to make it through? What if I got overwhelmed? And maybe the largest concern, though I didn't see it then, what if I just fell back into my self as I was - I must always be my best! - without allowing the space and time and energy to do the most important things: let my body get strong again and begin to process what has happened and how I will be in my life, in my world, now?

I fought serious fatigue that first week. By the time I left each day, I'd had all I could take and would go home and just sit quietly, or if I had company or talked on the phone, I was really not pleasant. I just felt so irritable and exhausted. The second week, the short Thanksgiving week, was a little better. I still felt beat by the end of each day, but maybe not tired to the point of feeling angry about it. We'll see how this next week goes, if maybe soon my doctor and I will decide I can do more. There is one piece of advice I've gotten over and over from my doc, as well as from various people in various contexts: don't go back too soon; make sure you take the time your body needs. I'm trying to hold onto that advice and be very, very careful.

That addresses logistics. Otherwise, I'm just swimming through this slithery pool of memories and experiences, trying to fish out some meaning. The biggest thing I can get my hands around right now is the constancy of feeling my mortality. Of course, I've thought about this since the diagnosis. It was an invisible band fixed tight around my chest, daring me to take another breath; I couldn't look down at it. Now, it's more like a slippery black cape, the fabric trailing behind me so I can sense it fluttering at the back of my neck, feel it brush against my heels. It's not an idea anymore, but something stitched to me like Peter Pan's shadow. One night a couple of weeks ago, maybe just after I sent the last update, I climbed into bed and had this acute, visceral sense of... how to describe it... my Self gone from this place, the part of me that would be gone. It took my breath away. I have an acute awareness that I've gotten a reprieve, at least for this moment, and also that this is not a thing to be taken lightly or for granted. That knowledge holds a vast weight.

Last weekend, I went to my favorite brunch spot and ran into a server who had moved away for about a year and is now back. We'd been friendly before and when she saw me, she gave me a hug. We went to my regular table and she plopped down the menu and said, "So, girl, what's been going on?" I stuttered and stalled for a few seconds - we hadn't been close before she left, just interested parties, acquaintances-plus - until I finally said, "We'll, I've had cancer." How do you small-talk around that? I couldn't think of a way to be real and honest without telling the real, honest truth. She cried. It wasn't dramatic and she didn't launch into a personal story that connected to her response. She just stood there looking nervous, asking questions, and wiping away tears.

This was only the second time since my diagnosis that I've felt in the position to need to reassure someone else of my okayness. You who have been reading these missives know that I decided early on not to pretend, not to be okay just to keep people comfortable. The first time post-diagnosis that I felt called upon to be okay for someone else, it was so early on and I was still so stunned, I just apologized and said that I couldn't make any promises. I knew what that person needed to hear me say, but I couldn't say it. This time, it was different. It [could see that this was more] about *her* fear than *my* reality. Does that make sense? Don't misread what I mean - I'm sure she's a deeply caring, empathetic person and she felt for me, but, I think what was really happening was that, for a second, she could see my cape billowing around me and it made her afraid that she'd have to feel her own cape too. By reassuring her that I'm doing pretty well now - "Look! I'm strong enough to come out for brunch again!" - I think I was really just desperately trying to put my metaphorical arms around her and whisper, "Yes, we both have our capes on, but, sweetheart, thank God, we don't have to look at yours yet."

I saw my long-time therapist a few weeks ago and we talked about this... it's not quite sadness, but stunned-ness that I'm carrying after the end of my round of treatment. She suggested that I am now grieving "the loss of a life without cancer in it." I may never (please, Heavens, let this be) have cancer again, but I will now always have a life with cancer in it. I can see the truth of this differentiation in the many people who have felt so keenly for me and reached out in such specific and knowing and loving ways because they too, though now healthy, have a life with cancer in it. I've been ruminating on that idea of grief and it feels very accurate - that sensation you have after the thing-that-changes-everything, a death, a divorce, a serious illness. It's foggy what life was before; you can't quite remember. It's foggy what life will be; you can quite imagine. In the middle, in the now, it's just stunning and upsetting and unfair that you have to think about either. (This brings to mind current events too, right? We are in the stunned middle.)

Over the last couple of days I've been reading Anne Lamott's essay collection Traveling Mercies. In "Ladders," she writes about grieving after the death of her lifelong best friend (it is not lost on me how everywhere I look there is cancer, there are people gone too soon). "But what I've discovered," she writes, "...is that the lifelong fear of grief keeps us in a barren, isolated place and that only grieving can heal grief." And later, "A fixation [on something else] can keep you nicely defined and give you the illusion that your life has not fallen apart. But since your life indeed may have fallen apart, the illusion won't hold up forever, and if you are lucky and brave, you will be willing to bear disillusion. You begin to cry and writhe and yell and then to keep on crying; and then, finally, grief ends up giving you the two best things: softness and illumination."

I guess this is what it all adds up to for me right now - all of these walks I need to take, and the staring at the wall/ceiling/sky I need to do, all of this truth-telling and honesty you all have been willing to bear - it's in service of this idea: that I can't hide from what's happened, that the only way out is through, that in the end there is, maybe not sense in the senselessness, maybe not order in the chaos, but at least that sweet softness, that blessed illumination that Anne Lamott talks about. That's what I'm hoping for, at least. Thanks for riding along and listening; I don't know how I'd have made it to where I am without you.

Prayers for peace and love and understanding to you and far, far beyond.

Xo,

Sara

Ps. Eyelashes are here! Eyebrows are coming! Peach fuzz up top. :)

2014 July 14 - Head Decor It Is (Lotsa Update)

Hey friends,

With my second chemo treatment coming up tomorrow, I want to check in and give you all an update on how things have been going.

First, some good news on the medical front: I got results today from the first test of my CA-125 (blood marker for ovarian cancer) level since before the surgery. Before surgery, my level was over 2,000 (35 is normal); now, my level is 25. The doctor said she's never seen such a drastic drop after only one treatment. Who knows what happens next, but not bad birthday news!

More generally, I'm still struggling a bit with healing from the chemo port I had implanted just before my first treatment. Over the last couple of weeks I've had time to do some recovering from the initial surgery and am feeling much more mobile. In the last week I've done more "normal" things than I've done in the previous five combined - things like going grocery shopping and having Sunday brunch at Local Harvest. Even though I'm running at probably 30% of my regular speed, it has been good to get out in the world and to have some time and mental clarity to actually begin processing some of what has happened.

In news of the bizarre... a few days ago, nearly 3 weeks after my first treatment, my hair started falling out like crazy. I'll admit that, even though I was expecting it, it has been unsettling. Going from a thick, fuzzy buzz-cut to thin and mangy over the course of about 48 hours is startling. I've been watching lots of YouTube videos to learn how to wrap a head scarf and maybe it is working out okay? Also, thanks to some awesome people, I know a couple of cute hats are headed my way. Some day soon, I'll rock it bald, but till the hair is all gone, head decor it is.

I'll keep you posted about how things go with treatment and recovery this week. Thanks for thinking of me and sending your prayers and good vibes my way. I can feel the love.

Hugs all around,

Sara