2014 September 16 - Chemo #5, Sleepy Fighter (Lotsa Update)

Hey friends,

I'm really sleepy so this will be short, but wanted to let you know that chemo treatment number five went smoothly today. I slept through most of it and darling Kristi sat by my side. (Now she's out getting me food; after tonight, eating will probably be much harder, so taking advantage of all the drugs they gave me today and the presence of quenchable hunger.)

Had a little scare yesterday. Friday's pre-chemo blood work showed white blood cell count too low for treatment. (It was 770 and they will not treat below 1000.) I had to rush in for another test yesterday and my count had risen to around 1200, so we were good to go this morning. My doctor is concerned that my white blood cell count is not rebounding as well as he'd like after treatments, so plans to add another drug called Neulasta that is supposed to help rebuild white blood cells (neulasta.com). This is a shot given 24-72 hours after chemo. Thankfully, my insurance allows me to go get the shot in person, rather than giving it alone at home, so I'll go in Thursday for that. (Should be interesting to get myself out of the house that day, which is usually my worst in the cycle...)

Well, that's all I have for now, folks. I'll keep a wide net up to catch your prayers and good thoughts this week.

Your sleepy fighter,

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 August 26 - Chemo #4, A Comforting Arm (Lotsa Update)

Quick update. Made it through chemo infusion number 4 (of 6). The magnificent Sarah Whitt is here from Philly to be with me for the treatment and the coming week. Shawnessey also stopped into the infusion center for a little while so Sarah could get some lunch. (Just all kinds of bright energy bouncing around that chemo room!)

There was a little holdup yesterday when my doc's office saw my bloodwork from last Friday; my white blood cell count was too low for treatment. After some fancy maneuvering to get unexpected (the doc's office calls it "stat!") bloodwork drawn yesterday, we learned late last night that I had rebounded and treatment could go ahead on schedule. In other bloodwork news, my Ca-125 is down to 7.5. My doc is pleased with this and imagines it will stay here and not go lower.

Now, I'm home, extraordinarily tired, about to have a snack and go to sleep. I'll appreciate your prayers, thoughts, vibes, and other good stuff for the coming week.

Love and more love,

Sara

Ps - The great thing about being with a good friend is that if you're just too tired while waiting for the hospital valet to bring your car around, there is a caring shoulder on which to rest your head and a comforting arm that slips around your back. Xo

2014 August 24 - This Wistful Okie Self (Lotsa Update)

Hey there,

Well, it's been a pretty good week! I worked from home and got a lot of catching up done. On Thursday, I even made it to part of the College's fall kick-off meeting. It was such a relief to see so many kind, genuinely caring coworkers/friends. I was thrilled to be there.

Fridays have become a source of major anxiety as that's the day I go for bloodwork. (I've always been more antsy than most people when it comes to things like this, but all the trouble I've had with the ports has not helped.) Things went smoothly this week and it looks like both the incision from the old port (that had to be removed) and the new port are healing up ok. The best part was the reward afterward...

You all know that I grew up in Oklahoma, mostly in the suburbs, but my best childhood friend, Amber, lived more rurally and when we were about 12 (I think?), Amber got a horse. I was never a very confident rider, but something about all those days of riding the horse, sitting around while Amber did all the horse-care things, playing Little House on the Prairie, stuck with me because, a couple of years ago, I was writing and stumbled into all of these memories of life as a country girl. I woke this wistful Okie self. Before my diagnosis, when I thought I was having a surgery with a 4-week recovery time, I was texting with my brother, Jason, and said, "When this is all over, I am so going horseback riding." During my convalescence, I've been thinking more and more about that and craving just to be around some horses. Well, what did Shawnessey do? She found an equine therapy center in Wildwood that said we were welcome to visit. So, after my bloodwork on Friday, we went for a drive and spent a couple of hours hanging out with Florian and Magic and Brady and Hero (a picture is in the Lotsa site's photo gallery). I'm not near being able to ride, but we petted and brushed, and talked to them. It wasn't like a movie, where everything changed the moment my visit-a-horse fantasy [came true], but I do think I'll go back. After the horses were returned to their pastures, [Shawnessey and I] found a shady spot and sat for a while watching an empty, sprawling field and listening to the buzzing of the bugs in the trees.

The Saturday after my last treatment, I was so miserable. You know that sort of visceral, child-like place you get to when you've cried too much, and you just start saying things that come from a place you didn't know existed? Well, I was there and what I said to my Auntie Meg was, "I just keep thinking I want to go home, but I am already home. It doesn't make sense." It was seriously distressing that there was this call from some deep place and I couldn't understand it. Sitting under that tree, with that pasture stretching out in front of me and the heat and the trees and the bug noises, I had the feeling that this is home. Maybe this is what I'd been longing for in that terrible moment almost two weeks before. But, what is the this? Is it the actual landscape of my childhood - big green fields with horses nearby? Or something that the childhood landscape represents - perhaps a time when it still seemed like adulthood would bring freedom, when growing up meant realizing a dream? Maybe the home I was looking for was actually just hope for something better.

I guess all of this comes back to the first question that presented itself in flashing neon when I realized that treating cancer had taken over my life: all else aside, who am I and how do I choose to go on? That, I think, is where the hope comes in. It's sort of impossible to go on without it.

In the last few days, I've felt more acutely how the world keeps moving, moving, moving even when I feel like all my strength gets sucked up just trying to stand still and be.

There is a jumble of other things I could say, but for tonight this is enough. The takeaway: horses and lunches with friends and small revelations are all reasons to keep on keepin' on. And then there is you. Thank you thank you thank you for being here to listen and help and send good vibes and pray. It matters.

More soon...

Love,

Sara

PS. Thank you to everyone who tried to help find Elgin a new foster home! In the end, she is going to stay put with the family she already knows and loves.

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 August 11 - It's a Metaphor (Lotsa Update)

Hello again,

If you didn't already know, recovering from a chemo treatment - speaking delicately - stinks. And this last week has been particularly rough. There is a place you can go where you just can't imagine that anything will ever be good again. Goodness or rightness or even okay-ness are unfathomable; I found myself in that place quite a lot this round - both physically and mentally. (Does this remind anyone else of the dementors from HP?) My Aunt Mia was here with me until Saturday and did her best to keep me steady, which sometimes meant just petting me and cooing while I cried. After she went home, it was my Aunt Meg hanging on the phone with me while I did the same. A bunch of "no good, very bad" days.

I question why I'm writing so much and so clearly about this here. In this venue, shouldn't I just get to the point, give a quick update, then get positive? I don't know... Should I? I feel as though, if I were in real eye-to-eye conversation with you, I'd tell you the truth, so why not here? This treatment has me holed up and broken, but as much as people like to label me "sweet" and "nice," it's in my soul to be real. Maybe I'm too raw still and will revise some of this away. Maybe not? I wonder what you'd prefer. How much is the right amount of sharing? (You don't have to answer that!)

Well, anyway, I felt like I was knocked further down by this last treatment even than the ones before, but may be starting to see the upswing coming. As evidence, I can tell you that I cried only a little today and asked Jen T to drop off some dinner (which, of course, she happily did!). I paid some bills and did some work online and reveled in a lovely email from a friend currently on a road trip (one of my very favorite spring-summer-fall pass times). The email described the scenery in a way a writer could love and even included a frosty mug of root beer at a roadside stand. It made me nostalgic and happy in equal measure. Happy in the same way I was happy to get a smiling selfie from my brother, Jason, and his wife, Susan, who are vacationing at the beach this week. It's just amazing to imagine that life - road tripping, summer-vacationing, kids-dripping-ice-cream-cones life - is going on in a circle somewhere close to this one I'm trapped in for now. The nostalgia is for my own past selfies and road trips as much as for future ones that seem, right now, so hard to envision.

After all of this maybe-I-should-edit-it rambling, what do I really have to say to you today? Enjoy yourselves if you can, folks. I need to know good stuff is happening out there.

My, that might all be too maudlin, so I'll end with this...

I woke this morning to a text from my big brother. It came in at 5:37AM and began with an iPhone photo of the sun coming up over the ocean. It said, "Sara... The sun is rising. :-)." When I woke up several hours later and gave a simple reply, Jason continued, "Do you get it? It's a metaphor. :-p" I love that guy.

And you too. Thanks for being here and for being you.

Xo,

Sara

PS. On a totally logistical note, I am looking for a temporary foster home for my dog, Elgin. It would be best for me to find a good spot for her to stay until I'm through with these treatments (mid-October). I think she would do best in a one-dog household with no small children. (She has had doggie-friends before, but they are hard to come by; she is used to living with a feisty cat.) Elgin is currently in Tulsa and could be fostered either there or in St. Louis (or in between, I suppose?). Drop me an email if you would like to discuss in more detail.

2014 August 5 - Chemo #3, Tender (Lotsa Update)

Hi dears,

Another quick update...

Chemo number three is behind me. Even with the tenderness of the new port, once I was connected, things went well. My Aunt Mia is here from Denver to spend the week taking care of me. (This is her second trip since I was diagnosed and she is fantastic.) I was asleep through most of my treatment, but, so far, these 6-8 hour sessions lend themselves well to deep conversation, which Mia and I shared.

Before the chemo, Shawnessey joined me to meet with Dr. Powell. We went over a few things including general questions about the why/ how of this cancer. I learned that, unbeknownst to me, endometriosis, can change into cancer. Endometriosis is so common and cancer from it so rare, that it's not often discussed. I wish it were. In good news, my Ca-125 (ovarian cancer marker) has dropped to 10 (from 2000 prior to surgery and treatment); that is a good sign.

Now, I embark on a week of chemo recovery and the beginning of healing for the new port. Probably some rough days ahead in the coming weeks, but I wanted to share the update with you while I could.

THANKS and love.

Xo,

Sara

http://www.youcaring.com/medical-fundraiser/help-sara-ross-beat-cancer/2 06587

2014 August 4 - Wounded Deer (Lotsa Update)

Hey friends,

Just a quick update. I had a pretty great week last week - worked from home, ran errands, and generally felt a breath of what life used to be.

Thursday, I noticed that something seemed off with my port (the access point implanted in my chest for delivery of chemo, blood draws, etc.)   I went in and had it checked out but nobody could see an issue. Then, on Friday, I noticed again that something didn't seem right. When I went in for my weekly blood draw, I was told that the port was pushing out through the skin and needed to be removed immediately. (This can be very dangerous since the port creates easy access to a main artery; a problem like this was one of my biggest fears.) So, right then, with Shawnessey'a help, I underwent a procedure to remove the port and made plans to have another one installed Monday, in time for my scheduled chemo on Tuesday. Ugh.

So, today, Shawnessey-the-amazing, picked me up and supported me through a very stressful day during which I had another minor outpatient surgery to implant a new port. The experience this time was so much better than the first time and hopefully the long term result will be much better as well. Ugh again.

Ok, enough with the frustrating news! Good stuff now... My darling Aunt Mia arrived from Denver tonight to join me for chemo week. It's exciting to see her again and I see many episodes of Parenthood in our future.

Some of you may have seen that the fundraising site* my brother launched to help me afford the costs of making it through all of this is going extremely well. We've surpassed the goal and I am just absolutely stunned by the generosity of people who have given and people who have shared the info on FB and in other ways. It is unbelievable and I can never say enough about how grateful I am.

I started this update with info about a few seriously bummer days and I'm ending with thanks for being as awesome as you are.

And with this quote I read today from Emily Dickinson; it may be out of context, but I love this line for what it is and what it helps me hold onto today: "A wounded deer leaps highest."

Tomorrow, I take another leap. Thanks for being there to help with a soft landing.

Xo

Sara

http://www.youcaring.com/medical-fundraiser/help-sara-ross-beat-cancer/2 06587

2014 July 26 - Stunned & Grateful (Lotsa Update)

Hi again,

Well, the past week has been up and down. Recovery from the July 15th chemo reached further into this week than I'd hoped, but by Wednesday, I was starting to level out and Thursday night I was thinking like myself again -- wanting to visit my cat, missing my dog, and laughing a lot with Kristi, who was here again from SF to help out (there may have been some bald-girl Sinead O'Connor lip-synching...). All in all, I'm having some good moments here and there, and hoping the 10 days or so before my next treatment will have some more.

You probably know that my brother, Jason, launched a fundraising site* for me last weekend. Lots of you have helped spread the word through Facebook and email (one friend I know of even blogged about it) and I'm just boggled by the response so far -- stunned and grateful and humbled. I don't know what to say except that I'm gonna pull up another bucket of gratitude and pass it your way. You guys are just... more than amazing.

I haven't been reading much lately, but I did come across this little sweetness yesterday in Sara Zarr's YA novel, The Lucy Variations: "...because even if your own life wasn't perfect, there was this WORLD. And you were LIVING in it, somehow."

More soon.

Xo,

Sara

2014 July 20 - The "Help Sara Beat Cancer Fund" (by Jason Ross)

To Sara's dear friends and family-

As you know, Sara continues to undergo treatment for ovarian cancer. Though we are encouraged by recent test results, she still has a long road of treatments and recovery ahead of her. In particular, she has four more rounds of chemotherapy to endure; it won't be until mid-October at the earliest that Sara can hope to be done with this ordeal and resume a somewhat normal life.

During this time, Sara will not be able to maintain a normal work schedule and she has recently used up all of her paid leave, forcing her to go without pay for a time. Her employer has made concessions that will allow her to begin working reduced hours during treatment to retain some pay and medical benefits, but her finances will be severely affected. Also, because she does not have family close by - and because her St. Louis friends continue to give so much of themselves - she is concerned about the cost to arrange for family and out-of-town friends to come and stay with her during her chemo appointments, and in the days following when she is suffering the side effects of her chemotherapy most acutely.

I know that many of you - especially Sara's out-of-town friends and family - have asked me, "What can I do to help Sara?" Honestly, I think the thing that would help Sara most would be to alleviate some of these financial concerns so she can focus all of her energy on the healing process. I want to ask you to consider making a small contribution to a fund that will HELP SARA BEAT CANCER.

I have created a campaign at http://www.youcaring.com/medical-fundraiser/help-sara-ross-beat-cancer/206587. YouCaring allows for donations to be made directly to Sara - they take no cut from any gifts made (other than to cover transaction costs from credit card donations). Any amount you give will help. Also, you may feel free to share the campaign on Facebook.

Thank you for loving my sister, and for supporting and encouraging her in all of the ways you have.

Sincerely,

Jason

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!

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

2014 July 1 - Pure Beauty (Lotsa Update)

Hi there,

After a little scare and hospital visit for fluids on Sunday (thanks to Jen T for white-horsing that trip), I'm finally feeling more like myself. I slept well last night and was able to do a few little things around the house today. Also got out of my pajamas for a really nice visit from my boss, Jean, and coworker, Alberta. Ended the evening on the porch (outside! not for a doctor/hospital visit!) with my current visiting caretaker/dear friend, Tara, and Jen T. (Also, just to share the good news - I enjoyed eating today!)

This Thursday will end my month-long string of having either a family member or friend from out of town staying with me. I think I feel okay about being on my own until the next treatment on July 15th. I am hoping to spend these next two weeks resting a lot and catching up with St. Louis folk. (My beloved cousin/BFF, Alexis, will be coming back from Portland to be with me for the week of the treatment.)

Again, thank you all for being so amazingly available and willing to help. As crappy as this all is, you are pure beauty.

Love,

Sara

2014 June 28 - All Humility (Lotsa Update)

Hi all,

Starting to feel a little more human this evening and finally had a chance to log [into the Lotsa Helping Hands website] myself. I am all humility. Thank you and thank you again for showing up for me. Thank you also for all the texts and cards and poems and meals and cookies and errands and good thoughts. I am working hard to take it all in. I've spent a lot of time crying recently, but more and more it has been with overwhelm at how wonderful people (people like you) can be.

I'm still recovering from the surgery/chemo combo and the next treatment looms, but I'll hope to be able to get out (or have people in) more soon. When that happens, look for the girl sporting the fresh buzz cut. Yep, my 20-something feminista haircut is back in full force. Time warp.

Love and more love,

Sara

2014 June 26 - Chemo Recovery (Lotsa Update by Jen T)

Hello,

As predicted, the nausea is intense. Yesterday (day 2) was easier than today - her medications were keeping up with the side effects and she was able to eat. Today she's really struggling to get food into her belly, even just enough so that she can take her pain medication. She knows how important eating is, though, so she continues to try. On the up side, she's moving around as well as ever and spends most of her time comfortably in her recliner.

Please keep your messages of love and support coming. Sara, understandably, feels like she's been removed from the world and your messages help to reconnect her.

Best,

Jen T

2014 June 24 - Chemo #1 Details (Lotsa Update by Jen T)

Hello everyone

Sara is still doing very well and eating. The anti-nausea medication that she received today during her infusion is holding well. In fact, Wendy reports that Sara's appetite is better than it's been to date. Sara's medical team tells us that the IV medication will probably wear off some time tomorrow. She has medications to help her with nausea at home, but days 2 and 3 are expected to be tough so keep those thoughts and prayers coming.

Once these hardest days pass, Sara will have two weeks to continue to heal from her surgery before she needs another chemo infusion. She'll be receiving the exact schedule in the mail, but we know she can expect her next treatment, a single infusion, right around July 15.

Last, thanks to everyone for your patience while we get up and running. It's wonderful to be a part of such a caring and motivated community!

Jen T