Port-a-cath

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 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 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