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 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 August 16 - As True as the Pain (Lotsa Update)

Hey there,

I understand that maybe my last post had some people a little worried. I'm here to let you know that as true as the pain in that post was, it's just as true that this week has been pretty ok. And ok is ok.

By Monday, my mental state was quite a bit better and on Wednesday evening, I felt physically well enough to get myself out of the house for a little trip to Target. Later in the week, I was out and about for doctor appointments and small errands, and even made it to UMSL for a couple of hours to meet with Jean and a few coworkers. Today saw an old-style (meaning pre-cancer-Sara) brunch with "the gals" at Home (in Maplewood - you should go there!), followed by a visit from Angela and Leeli. (Berries and brownies and pastries, oh my!)

While the week had all those good spots, I've also been blown away by tiredness. Like, seriously, I can't get up the gumption to take out the garbage? Nope. (Don't worry, I plan to ask for some help tomorrow. It's gotta go out.) Really, getting in bed at 5pm (even though I won't be able to actually sleep till after midnight)? Yep. I overdid it a bit on errands and aggravated all the healing-in-progress with the old port site and the new one. It's been two weeks since those surgeries and there is still occasional bleeding, which is stressing me out. Who doesn't want to have to go back to the hospital/doctor for these ports again? This girl. Ugh.

Man, I didn't mean for this to turn into another downer update! This is all just really hard and that's the honest-to-goodness truth. When I have the mental capacity, I do try to look for the good parts and appreciate them, to see the bright spots. Brownies and milk, hearing Finn and Nate laugh and play in the background while I'm talking on the phone to Alexis, walking into the Touhill, sitting under a tree for hours at Fozzie's. Figuring out how to manage each day is the game right now and I guess those bright spots make me think I'm figuring it out ok.

Are you interested in some deep-thoughts rambling? During an email exchange earlier in the week, a friend asked me, "So, what does the aftermath of chemo feel like? I've never talked to somebody who's done it." I haven't responded, so he probably thinks I'm ignoring the email, but really, the question flummoxed me and has been floating around in my head for days. What does it feel like? I'm not going to answer here because, frankly, you guys got a good taste of what it feels like for me in that last post. It feels like the end of everything good. But, as I've thought about that question all week, what I've come to is this: the intensity of the experience of "aftermath" slips away slowly, shifts into these kind of shadow memories, and then I put them away because I'm gonna have to go through it again, and how could I if everything stayed fresh? So, maybe the important part of what thinking about that question brought up for me is what the wise people talk about - living in the moment. Aftermath of chemo moments suck. Like, really suck a lot. But once they're slipping away, maybe the point is to be in the moments that suck less, and then even less, and then eventually move to the ones that are ok, and then kind of good, and maybe eventually (heavens, please) there will be some that make it closer to the joy side of the spectrum? So, friend-who-asked-the-question, when I see you next, maybe I'll try to describe the physicality of what it feels like. If I were you, I'd be curious too. But, in the end what your question opened up for me is a way to remember that the aftermath is a present-tense that has passed. For now, I'll just be here in this moment, in my bed, watching the Roku logo bounce around my tv screen, worrying about my dog and my stitches and why I want to eat pot roast so bad. I'll let the aftermath be a shadow while I sit in whatever today happens to be. It's all we can do, right?

Thanks for reading and for caring and, as always, for being you.

Still just appreciating all the genuine love and support...

Yours,

Sara

Ps - More about my beloved canine whose happiness-management just seems like too much for me to handle as I go through this treatment. As I mentioned before, Elgin has been staying with very generous friends in Tulsa and I need to find her a new situation in Tulsa, St. Louis, or somewhere in between. She is 8 years old, weighs about 25 pounds, and is a terrier mix. She has lived with cats, though if she moved in with some again, would need help re-learning not to chase them. She occasionally has doggy-friends, but can have a hard time meeting new dogs. She has a hard time getting comfortable with new people too, but once you're in, you're in and she'll love you forever. (She and I have that in common, I think.) I would not feel comfortable having her around small children. If she is afraid and wants some space, she can aptly warn an adult who is paying attention, but a little one might not get the message. If you know of someone who might want to foster my darling for a couple of months, drop me a line. And again, thank you. Xoxo.

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