2014 October 15 - Strokes of Certainty (Lotsa Update)

Hiya,

Well, I've had a few people check in over the last couple of days to see how I'm doing, so I know it's time to send an update. (Don't get me wrong, I don't mind the checking in!)

The 10/7 treatment's tentacles seem to be longer than those of other treatments because usually by the Wednesday after (8 days), I go out and do some little thing - therapy or a quick trip to the store, something, but I'm still feeling crummy. Just so freaking tired and weak. I've been told over and over that the treatments are cumulative and particularly the fatigue is, so maybe I shouldn't be surprised, but man, I just feel beat beat beat down. I'm getting up and around enough to stay caught up on work, but that's pretty much the extent of it. Get out of bed. Work. Rest. Work. Rest. Go back to bed. It sucks, but I am hoping for a turnaround in the next couple of days. (And it is actually a relief to have some work to be responsible for - makes me feel not totally useless.)

With all of this resting, I've been watching a bunch of TV shows and movies, and characters with cancer just keep popping up. The other day, I watched no fewer than 7 different movie trailers before deciding on one that looked good. What was not in the trailer? Main plot line - cancer. The next day, watched another one and guess what? Cancer. The '90's family drama I didn't watch in the '90's, but am now totally sucked into - a whole season about cancer. Is this random?? Ugh. I don't know, but I watch them anyway. Earlier today, I actually found myself nodding and saying, "Totally," under my breath while watching one of the characters deal. Not sure what the use of all that info is to you... I feel crappy and am watching a lot of TV and thinking a lot about cancer. No big surprises there, I guess.

I said a while back that I'd tell it like it is, so...

I have a CT scan scheduled for a little more than two weeks from now. It is freaking me out. Everything about it. What it will be like the day of, whether everything will go ok. The 4 days I'll have to wait to hear what the scan shows. What if the scan says I'm ok for now? How do I figure out how to live like a normal human again? How can I take care of myself better so I might not have a recurrence or another cancer? What if the scan shows something bad and there is another snowball to ride down the hill? Scary stuff no matter what.

Before my last treatment, someone sent me this text: "The most important thing I can say is to have no fear through this situation. One thing is common to those who were healed: they believed first that they would be healed" (biblical context). Positive thinking, faith, the Secret. I think those things are important. Then, there are all the loved ones who have told me, over the last few months, about dreams or strokes of certainty they've had - visions of me with hair and smiling, with a partner, with a child. Multiple people, independently. And they're all so sure it's real and I *believe* them. And the newest one came last night to someone who I've grown to think of as something of a seer - me swinging on a trapeze and finding the faith to let go of what's behind me and grab onto the next bar. The understanding being that the cancer is behind me now and it's time to reach forward and grab my new life. Can you see what I mean? It's all scary, the good stuff and the bad.

I confessed recently to one of my closest confidantes that I'm afraid this disease has stolen some of my boldness. Those of you who've known me a while know that I've worked really hard for the last few years to shake off fear and be more bold - carefully cultivating in myself the kind of person who looks at the next trapeze bar and thinks, "Holy shit, that bar looks far away and I'm not sure if my hands are chalked up right, but here goes!" This whole cancer thing has set me back, but I really want to get there again.

That's all off in the distance, though, I suppose. This weekend there are things I want to do. Wonderful people I want to see getting married. A concert I've been holding out hope for months that I'll be able to attend. It's only Wednesday and things can shift quickly, so here's hoping I'll see some of you out in the world very soon. And maybe we can laugh some.

Thanks, more than I can ever say, for your continued thoughts and prayers and all kinds of other good stuff.

Love and more love,

Sara

2014 September 15 - Rhinestone Cap Theory (Lotsa Update)

Hey there,

It's been a while since my last update. I've thought about you all a lot and thought about what I could be writing to you. The idea of writing the update though, came to stand for the fact that this is still going on, that these treatments are not over yet. But alas, that is the truth. Tomorrow, I go in for chemo number five. (Should there be an exclamation mark at the end of that sentence? Should that read as an excited proclamation? Almost done! Maybe it should, and sometimes I do feel relieved that it looks like the end is in sight, but today is not a relieved day - too bad for you!)

Ok, so I'm bummed that the chemo cycle starts again tomorrow, but in reality, things have been pretty good for the last week or ten days. I've spent a couple of hours in meetings at work, hung out with an awesome horse and horsewoman at Equine Assisted Therapy (eatherapy.org), had brunches with friends, even went to see a movie. I also caught up on the phone with two long-losts I've been wishing to talk to. Even though I'm running at about half energy, and occasionally just stop everything and collapse in bed, all of this makes me think that I really could get back to "regular life" eventually.

I've been doing a lot of thinking about that concept of regular life and what it will mean, if everything goes as hoped with the chemo, to step back into my world. I can see a blurry imagination of what "regular life" looks like. Do you remember how old TVs used to go fuzzy or fill with rolling horizontal lines so you could kind of see what was happening on screen, but not clearly? If you tapped just right on the top or the side, you might be able to bring the picture back into focus and the characters would move along across the screen as they were meant to. Right now, I can only see that fuzz, those lines. The "technical tap" isn't quite working in my mind, but I hope a whole new antenna is coming soon.

In somewhat lighter news, I got some new glasses this week. That doesn't seem like such a big thing, except that they've become a kind of disguise. Since I've lost my hair and, now, most of my eyebrows and lashes, when I go out, I've come to feel sort of like an object to be assessed by people walking by. Most do the glance-and-look-away, some do the sympathetic smile, some do the full on hey-we're-both-just-people-in-the-world smile (that's my favorite). With my new glasses, which hide this eyebrow-less, ghostly blank I perceive, I blend better. I'm just a hipster with a hat on. Mwah-hah-hah! I've fooled them and feel a little more like I can move through the world like I used to. Time to get used to some big, chunky glasses for a while.

This whole idea of dressing and adorning for cancer has had me thinking. I'm calling this my rhinestone cap theory. I'm sure you've seen ladies out in the world, or maybe on tv, hairless and wearing a baseball cap bedazzled with rhinestones. I can't be the only one who's wondered why. Now, maybe these are prevalent because they are readily available at places like the cancer center at the hospital, but I think it's something else, something I've been relating to lately.

When I knew I was going to lose my hair, I was upset. Even as a woman who wore a buzz-cut by choice for much of my twenties, my hair is important to me. While I've perceived the rest of my style as understated, my hair was always my statement piece; it was meaningful, if only to me. Now it's gone and, especially after my surgery, my regular clothes weren't comfortable, so that part of my regular cultivated persona was gone too, so I went back to my early-twenties goth roots and took to wearing long, flowy, comfy, blend-into-the-background black things. That worked and I remembered why I loved that look so much back then, but I was on one of my first outings post-surgery and saw this t-shirt with a giant blue-eyed tiger on the front and said to the friend who was with me, "Every bald girl deserves a shirt with a tiger on it!" It was more than a month before I found the moxy to wear the tiger, but I was right. There is power in that flashiness!

This leads me to the rhinestone cap theory. The effects of chemotherapy make a person feel like she is literally disappearing. Weight goes, color goes, hair and people and happiness go. A person feels wasted and invisible. For me, at least, there came a breaking point where I didn't want to look sick and waif-ish anymore. I wanted to have some rhinestones on my cap! To say to the world, "Hello! Yeah, I'm sick, but I'm still here!" There's so little we have control over in this, so bring on the... well, rhinestone hats still aren't for me, but bring on the purple glasses and tiger shirts. I'm still here and maybe there is a little fun to be had in this horror after all.

This afternoon, I pick up from the airport Kristi, one of my oldest and dearest friends, for her third visit in the last three months. She'll be with me through tomorrow's treatment and the coming week. I really don't know how I'd be making it through without friends and family like her and all the others who have managed to come to stay with me (most multiple times!), or friends and family like you. There just isn't a way to thank you all enough.

All my love,
Sara

2014 September 2 - Like a Gift (Lotsa Update)

Hello again.

Well, I've almost made it to the other side of treatment number four (by the other side, I mean resolution of the after/side effects of the chemo) and I think I can see a crack of light at the end of the chemo sequence tunnel. I'm afraid to think too far past the last two treatments (9/16 & 10/7) but at least that will be the end of some part of this whole cancer thing, right? (Seriously, three full months trapped in my apartment with it and the reality of that word - cancer - is still actively blowing my mind. Anyway...)

The aftermath of this treatment hasn't been as bad as the others. I'm just a week out and, though I haven't been able to do much, I have made it outside a few times to bask in this amazing, cool weather. I'm still dealing with the regular, lingering digestive issues, but am ridiculously grateful that I didn't experience the crushing depression you all saw so clearly in the updates I wrote after treatment number three. Sarah Whitt, who came from Philly to stay with me for this treatment, looked at me on Friday night, after we'd spent time both morning and evening just sitting quietly on the front porch, and said, "This day feels like a gift." And she was right - a day so close to treatment that saw me outside and feeling relatively ok was most certainly a gift.

The first time I went out socially after my diagnosis, I felt very delicate. I experienced this sense of being in regular life - near the people I know and in a usual situation - but separate from it too. I was right there with everyone and they could see me and I could see them. We could interact, but I was different; I imagined myself inside a bubble.

With only two ("only" is a sickening sort of word to use here, but it gets the point across) treatments left and my external physical wounds moving toward healing, I'm feeling this sense of suspended animation, or rather that I can see a potential end to it - that I may actually get out of the suspended part and be animate again, that normal life is in the offing. But, I'm not sure what normal life looks like anymore. What I imagine is like a cartoon world where colors are bright and things move fast; there are birds and breezes and smiles and it's all quite dizzying. Actually, remember Glenda's bubble in the old Wizard of Oz movie? That's me in there - skinny, tired-eyed, bald - floating through this distorted Munchkin-Land of color that makes up the "normal" I can't quite imagine anymore. It's kind of scary. I want to be out of the bubble, but "out of the bubble" is now an unknown land.

I guess if I think hard enough about it, we all walk through an unknown land every day though, right? Even if this particular not-knowing does feel awfully looming? (Oh, I could spin on this for a while, but I won't!)

There is one seriously important thing you guys have shown me though. I'm not in this alone and for that - bubble or no bubble, known or unknown - my gratitude is (humor me!) as big and sparkly as the Emerald City.

Xo,

Sara

2014 July 15 - Chemo #2, All the Flowers (Lotsa Update)

Hi again,

Just a quick follow-up to let you know that today's chemo treatment went smoothly. I was there, with my cousin Alexis (Portland, OR) from 9am to 4pm, then came home and napped for a while. Imagining that the next few days will be on the crummy side for me, but I think I have a better handle on how to use the medications to make things more manageable.

This is the epiphany I had today, guys: with your help, I just might be able to do this. I'm struggling to find a way to say something more than thank you, so I'll share this quote I read recently:

"You can cut off all the flowers, but you cannot keep spring from coming. " - Pablo Neruda.

I'll be in touch again soon.

Love,

Sara

PS- Someone sent me the DVD of To Kill A Mockingbird and somebody else sent me Mark Nepo's Book of Awakening, but I don't know who? First, thanks! Second, drop me a note to let me know it was you!