Saturday, November 9, 2013

I couldn't make this stuff up.

More news from BizarroWorld.

Even though I had the Theresphere radiation procedure scheduled for Friday the 8th, I was lucky enough to shoehorn in an EXTRA surgical procedure the day before (Thursday afternoon). You see, my liver numbers were "off" again, and my eyes and skin had again turned a creepy yellow. So last night, I checked myself in for an ERCP, and they placed a new liver stent. The procedure was fast and easy. Although my eyes are still yellow and it's now Saturday. Hm.

Neil and I busted out of the hospital right after the ERCP (nicer to stay home than stay there) and returned for our Friday 6:30am checkin, this time in the radiology dept.

Today's Theresphere procedure was intended to blast the remaining half of my liver with radiation. You've maybe read about it earlier in the blog. Super cutting-edge stuff administered by a smarty-pants doctor. What's not to like about that? (Well, you know what I mean. It's better than a stick in the eye, but it's no Caribbean cruise. Now THAT'S  my kind of fun.)

The procedure happened, and when it was over, they delivered the not-so-awesome news that due to a MALFUNCTION OF THE CATHETER used to release the radiation, I received zero radiation. Instead of flowing into my liver, it got stuck in the kink and backed up somewhere outside of my body.

Still, since they had entered my liver via the femoral artery, I had to lie completely flat on my back for 6 hours while they ensured it healed itself. Healed itself from nothing but a big ol' nasty pointless poke.

And I have to go in for a re-do in 2 week. So much for all the planning we did around childcare and the assumption that I'd need help all next week.

My doctor was confounded. He'd heard of this happening, but it's never happened to him. These catheters cost over $3,000. He talked to the catheter manufacturers to get to the bottom of it. He filled out all the paperwork to ensure we didn't have to pay a cent for this surgery or version 2 of it. He shrugged and said that while it was a shame and a big waste of time, in terms of effectiveness, everything would work just as well in 2 weeks.

So I'm back home now. My friend Julie P from college is here visiting this weekend, and a few more college friends are coming over this afternoon. I'm not much of a host, but with truly good friends, it doesn't matter.

Two days, two procedures, one a misfire. Also, some coughed-up blood. (I'll tell you about it next time).  I don't know. What do you do? WHAT do you do? The only thing we know how to do right now is take it one day at a time. Take it easy. And be extraordinarily mindful of all I have. Which I do, every moment of every day. I'll write more tomorrow.

Saturday, November 2, 2013

Stivarga: the Fruit of Satan's Cauldron

I know I haven't written in a long time. Why? How long do you have? Things are complex.

Bottom line for now, though, is I've started a new chemo which I take in pill form daily. It's called Stivarga, and it is an ASS KICKER. I'm actually taking a break from it right now because after a week of it, the side effects were making aspects of my life intolerable. I'm exceptionally tired and take long naps each day, my feet are developing some sort of painful sores that is making it hard to stand/walk, and my digestion is massively screwed up. Until we can get a handle on some of these, I'm on a break.

I have a second and final Theresphere scheduled for next Friday, Nov 8th.

I just wrote a bunch more about how I feel these days, but I deleted it. Don't really feel like going into that right now.  In summary I'd say this hasn't been our finest hour, even though we are giving our all.

Sunday, September 29, 2013

Sunday check-in

It's been a little over a week since I had that strange procedure. I've really bounced back. Sure, I went through some ups and downs. The first several days felt like a whopper of a flu, then there's been fatigue, and a fair amount of vomiting, even now. But my energy is back, and I'm happy, social, and feeling the familiar cozy, autumnal feelings that one feels when fall arrives. I want to bake hearty dinners, wear boots and warm scarves, relax around Neil's fireplace fires, snuggle with a book and the kids on school nights, all of it. I don't know what's ahead, or if that procedure worked (I have an appt this Wed morning to go over "next steps", which I'm dreading, because I so much prefer living life in this current blissful, treatment-free mode), but I know I have to go back and face the music. I know that I don't get to continue feeling worry-free for much longer. And I know it's unfair. But I can't focus on any of that. Because in the end, it just does my soul NO GOOD. You simply have to focus on this day. Do what you can with today. And don't put off for tomorrow what you can or should do today.

It's funny, I have developed a real lack of sympathy and, I suppose, respect for people who refuse to live courageously. What does "living courageously" mean? I will talk about that in my next post. (Wow, THAT sermon sounds like something you're going to want to read.) It's Sunday afternoon, and by golly, I have stuff to do.

Sorry I haven't checked in in a while. I appreciate all the thoughts you've been sending my way. And food! I really, really have.

And if anyone knows what to do with the 50 or so green tomatoes I've got staked up out there in the rain, I'm all ears. I'll be damned if the slugs are going to be the sole beneficiaries of all that hard work.

Wednesday, September 18, 2013

There. A sphere.

At 10 PST on Thursday morning, I'll be getting my big Therasphere radiation procedure. If unfamiliar, google it. It's crazy.

Guys: I'm nervous! This is a big deal. Please send us all your best thoughts, prayers, vibes--whatever you got, we are accepting.

I will be a big ol' tired mess for at least a week after this. Pardon the lack of correspondence in advance. Come play with my kids. Be nice to Neil. Bring me milkshakes and smoothies and magazines.

Catch you later.

ps- Also send me good skin vibes. That last procedure gave me the nastiest hip rash in all of dermal history. I believe they scrubbed me pre-op with Clorox and a wire brush, then they sealed me up with duct tape. I am still peeling.

Friday, September 13, 2013

Friday the 13th: A great day for surgery!

This morning I underwent an ERCP (full anasthesia, scope down your throat, messing around in your liver) to add a second stent. It will help clear out the sludge that had accumulated recently and caused me to turn a winning shade of yellow. The procedure was a slam dunk, and now I'm on track for my big one next Thursday--which happens to be my dad AND Neil's dad's birthdays. Another auspicious sign.

I am feeling great, and all is well. Neil and the kids just biked down to the store and made giant milkshakes out of some of the glorious peaches and blackberries they found. Yu-um. I love Friday afternoons. The weekend is upon us and we have nothing scheduled.

We're really glad to have had such strong support from all our friends lately. You know who you are. It's been a rough few months, for sure. And I have lots more work to do. But once again (for the hundredth time. The thousandth?), we are ready.

Tuesday, September 10, 2013

Procedure scheduled for next Thursday

My theresphere procedure (liver radiation) has been scheduled for next Thursday, the 19th. It's supposed to knock me out from fatigue for at least a week. I'm going to miss an award ceremony at Kenyon as a result. (Oh, did I mention that? I'm getting inducted into the Kenyon Athletic Hall of Fame next weekend. Kind of a big deal, and kind of ironic to be celebrated for my physical prowess at a time like this.)

I'm slowly turning yellow again, so I'm waiting to hear back from the gastroenterologist, to see if I need a new stent, or what...

I have a huge red rash on my upper thigh. Turns out it's just a little residual internal bleeding from my femoral artery, which they opened last week when they did liver planning session. Why not.

Argh. I am completely, totally, utterly sick of this.

Friday, September 6, 2013

Change of plans

I haven't posted in many weeks. I have had some major ups and downs during those times. Too much to re-tell, and so I'll just focus on the latest.

I spent this past Tues-Thurs in the hospital. I admitted myself because I was having completely awful, unmanageable pain, particularly at night.

While at the hospital, we developed for me a pain management plan (drugs) that I can follow for home use, from here on out.

Also, I had a CT scan. The results showed significant growth in my liver tumor. It's the first time any of my tumors have ever grown at a significant rate. In the past, they've just sort of sluggishly increased in size. So we know that the DTIC chemo isn't working, and we are stopping that. Because my doc feels 95% of my real problem stems from my liver, we are focusing on just the liver for now. I am going to receive "theresphere" radiation directly to my liver. It's cutting-edge and cool, and they tend to get good results from it. I'll be starting very soon, within the next two weeks.

We've really been through the ringer lately, and so now I'm going to focus on being home, getting back on track, and living life. School just started back up this week. (In fact, I barely got the kids off at school before collapsing in the car en route to the hospital with Neil. It was as if, once both kids were safely away in elementary school at last, my body finally held up the white flag, saying, "Ok, Shelly, your work here is done. Go get some help.")