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.")

Thursday, July 18, 2013

Back in the saddle again

I write you from floor 3 of Swedish Cancer Institute, aka "the chemo floor". That's right, my very excellent blood tests have qualified me to return to this place to receive chemo once again. It's kind of like getting accepted into Harvard. Not to brag or anything, but my blood levels are majorly normal, kind of like YOURS, you non-chemo-receiving reader, you.

This past weekend, I travelled to Nashville and spent a wonderful time with the extended family. Congrats to cousin Tim and Katelyn. Nice job, Bec and Tim. Great to see you, everyone. Fun, fun.

This past week, I finished up sessions 8, 9, and 10 of radiation on my liver spots. Check that off the list. And now today, chemo. Ok, I suppose on paper that's not the awesomest week ever, but these things are relative to me, and I'm glad I am finally moving forward with treatment again.

So I'm now starting a NEW CHEMO. It's called DTIC, and it's usually used on lymphoma. A medical paper published in June showed that it's sometimes effective on colon cancer, too, so long as certain genetic markers are present, and I do have those markers. It's not a guarantee of remission again, but it's a shot. I'll have a scan in a few months to see if it's working. Feel free to send me a million prayers, good thoughts, energy, good vibes, or whatever you can muster. We kind of really need this one to work for ol' Shelldogg.

This past week has been unusually emotional for me. Historically, I tend to run rather even-keel in the emotions department, but for some reason, maybe it was being with family last weekend, I've been prone to tears this week. Both happy and scared tears. I've been easily knocked to my knees by my kids' conversation. I've gotten choked up thinking about the future, and people's lives without me. I've blinked back tears of sheer anger thinking about someone else marrying my husband 10 years from now. I've fought tears while lying on the radiation table, feeling a little overwhelmed by all the poking, prodding, burning, injecting, and pain.

This chemo is supposed to knock down my white blood cells, and also to make me nauseous. I got the nausea part nailed at this point. I can puke with the best of them at this point. We'll see how this chemo treats me, but if it's tolerable, we're headed off to the San Juans to go camping with some dear friends this weekend.

It's not a bad life I have. In fact, it's ALMOST a perfect life.

Wednesday, July 10, 2013


I'm packing up tonight to head to Nashville at the crack of dawn, to see my cousin Tim marry his beloved Katelyn. All the Bakers will be there-- I can't wait. Except, it's going to be about 100 degrees. Alas.

I'm lucky to be able to go. For the past few weeks, it's been a wait-and-see thing. Waiting to see if I'd feel well enough to travel, to "party" in the heat, to be away from my bed. I've still got pain from the stent. It's not as horrible as it was last time, but it's there. I can't go a day without taking a Vicodin at some point. Great! Maybe I'll develop an addiction in addition to everything else. Who's counting? Also, if I eat too much, it really hurts. So I haven't been eating much, and I'm getting really thin, which is not my goal. It's a permanent stent. I wonder, will it be like this forever? Is this my new normal?

The goal of the stent is to open up my bile duct. Once it's open and my bilirubin levels fall, I can resume chemo. (Currently, we're set to resume chemo next Thursday). I've also been doing radiation the past 2 weeks to hit the problem from another angle.

Meanwhile, I'm aware that the rest of the cancer is growing while we deal with this liver problem. So that's something that simmers in my mind 24/7.

My state-of-mind lately is that I'm TIRED of all this. I have been through the ringer. I just want things to change for the better, even if that's only slightly better. Living pain-free would help. Or getting some sort of good news, any kind. My doctor has seemed more "serious" about all this than he used to seem. It's just a lot for a person to think about. I don't seem to have a coping strategy in place, so I'm flailing a bit. The radiation makes me very tired. My house is a mess, and today I took two long naps in the middle of the day!

Tonight, while folding laundry, I turned on the tv. "Sleepless in Seattle" was on. It was terrible timing. The little boy was having a nightmare and screaming out in the night for his mommy, who was now dead. The dad ran up to comfort him, and he asked the boy, "What songs did mommy used to sing to you when you were scared?" Then the boy asked the dad what happened to people after they were dead. I was frantically pushing buttons on the remote, trying to rid myself of this storyline. Sure, it's just a cheesy movie, but it was playing out one of the many scenes I've already imagined happening with my own kids. Cancer sucks. At least with a heart attack, you're gone in a few minutes. With cancer, you get years to ponder your mortality, years to imagine and consider all the horrendous ways your death will hurt the ones you love most. Actually, I suppose, you're lucky if you get years to do it. Actually, I don't know if that makes you lucky or unlucky.

So I'm writing you tonight in a bad mood. There you have it.

I know being with family will lift my spirits.

Monday, July 1, 2013

Goin' back on the table today

Today they are going to redo my stent procedure. The goal is to add a second stent and also to place the first one in a better position. It is HURTING me. In a big way. The nurse said it's possible they placed it right on an area they had surgically cut, so it's riding up against the wound. I hope this time they get it right, because right now I can't function without Vicodin.

Other than that, things are good. Mom is visiting. Kids are happy. Weather is sunny. Summer is summery.

Wish me luck.

Monday, June 24, 2013

Hot mess

Just to catch everybody up with the latest:

-I had a tumor blocking a duct in my liver, and the liver's waste ("bilirubin") wasn't draining. I was itchy as HELL, and turning yellow as a result.
-They placed a stent in my liver to open up the duct
-The stent is working, but only S-L-O-W-L-Y. It still hasn't fully opened up enough to drain everything.
-They wouldn't let me start chemo last Wednesday, and they won't, until all the bilirubin is gone.
-They decided to add another approach to the problem. In addition to the stent, I'm going to receive radiation on this tumor, to see if that will shrink it up enough to open the bile duct.
-Radiation starts this Wednesday and will take 10 days.

How am I doing? I'll be frank. I am VERY, VERY ITCHY, itchy in a way you cannot imagine, torturously so, and I'm also in constant PAIN. I think it's simply pain from the stent procedure, and also pain from having a foreign object in my liver. I have to take Vicodin all the time, or else I'm in utter misery. I feel worse when I'm laying down, so sleeping has been extra difficult. Also I wake up several times during the night to scratch myself for solid hours on end (truly, no exaggeration). I rake my nails across my skin as hard as I possibly can, to the point of bruising and bleeding, and I can't stop.

I need to get this problem cleared up soon because I need to get back on chemo. And also because I can't really keep living this way. As long as I'm on my Vicodin, I'm ok. Happy and pleasant to be around. A productive member of society. But once that starts wearing off, I'm a mess.

Hopefully radiation works, the stent gets yanked, the pain/itching goes away, and chemo starts up again soon.

I should add that my kids are having a fantastic summer so far. At night they've asked me, "Can we do today all over again tomorrow?" Their easy contentment is a stark contrast to my personal state of being, with how much effort it takes me just to feel normal. But it somehow makes everything feel all right, to know that somehow I'm managing this personal crisis in such a way that they aren't even noticing anything's amiss. In fact, they're having a damned good time.

Friday, June 14, 2013


...and just like that, I'm back home, slowly de-yellowifying before my very (canary) eyes. 

They placed one stent in my liver's main bile duct, but it's not permanent, so guess what? I get to go back and do it again in 6 weeks. 

As I said before, there's a tiny tumor pushing against the bile duct, sort of pinching it shut, so stuff can't drain. If this new chemo doesn't shrink that tumor, we will have to radiate the sucker. Because we all need our bile ducts to be nice and open. 

Life, liberty, and free-flowin' bile ducts. 

Now I just have to rest up for a few days because they were really rooting around in there. Oww. No aerobics classes for me. And 5 days of antibiotics. And, chemo hopefully next Wed! (Did I just say "hopefully"?)

Thursday, June 13, 2013

Yellow Shell-o

What a week.

I found out early in the week that insurance approved treatment for me to get the DTIC chemo. That's the medicine my doctor recommended, based on the results of my genetic test. It's a chemo not normally used to treat colon cancer. But there's a decent shot it will work on me. It's exciting and surprising that the insurance approved it, since it's not "standard therapy" for my type of cancer. Insurance can really suck. They can't, how do you say it in English, "think outside the box". That's another story.

My son graduated from preschool Wednesday. (Adorable! They wore yellow graduation caps and collected a diploma while "Pomp and Circumstance" played.) My daughter finished up kindergarten today. (Heartbreaking! How she cried! She loves that school.)

I was scheduled to start the new chemo this Friday.

But-- I felt a little "off" last weekend. And itchy. All over. My upper right side was a little sore. I thought, wait a second. Bilirubin makes you itchy. (Bilirubin is a pigment found in bile and blood, I think. It's supposed to drain out of you via your liver's bile duct, but if it stays in you and doesn't drain, you turn kind of yellowish, and you feel itchy.) I called my doc. He ordered a liver ultrasound on Tuesday. On Wednesday morning, I got a call from the hospital to pre-register me for my "procedure on Thursday". A procedure at the hospital? What a fun surprise for Shelly!

So, I am going to have a little surgery this very afternoon. The common bile duct in my liver is being squeezed because of that tiny tumor outside my liver, the one that recently grew a bit. So the bilirubin isn't draining, and I'm turning a little yellow. They are going to put a stent in my bile duct to open that sucker up. Then, the crap will drain as it should, and I will turn back into my all-American, peaches-and-cream self.

They aren't going to cut me open (for once!). They put a scope down my throat and can reach my liver that way. Amazing, isn't it? But I will get general anesthesia, and I do have to spend the night in the godforsaken hospital, so they can monitor me in case I develop "pancreatitis".

Also, hopefully, this side ache will go away. Have you ever felt liver pain before? Probably not--I hadn't! It's not the best. Not awful, just a dull ache, like someone socked you in the gut and it doesn't ever ease up.

I won't start chemo this Friday. I'm going to reschedule it for next Wednesday.

Think good thoughts for me at 4:15 PST.

Thursday, June 6, 2013

Against the Wind

Hello, friends who enjoy reading about colon cancer.

Well, after 29 combined months, it looks like my days of Folfox-related hell have come to an end. This particular chemo is no longer working for me. 3+ years. We had a good run, Folfox.

My scan showed no tumor shrinkage, and, in a few spots, some slight growth. (We're talking 2.5cm spots, at the largest. Not huge. But, still. The wrong direction.)

Dr. K called me last night to deliver the news. It was 7pm. My son was in the middle of performing a concert for us entitled, "All things Blue". It involved maracas, a tambourine, and math problems on a white board. I was feeling enamored by his efforts, and trying not to snort out loud when the phone rang. ACK! Dr. K calling to foretell my fate. Impossibly jarring. Adrenaline going from 0-150mph in .75 seconds.

I took the call in our driveway, safely out of kids' earshot. I held the phone with a quivering hand while he dropped the latest bomb and explained what will happen next. We'll stop the current chemo, try out a new protocol. He has two in mind, one of which is a drug not even typically used for colon cancer. It's for melanoma, sarcoma, and lymphoma, but the results of my genetic testing from a few months back show that this drug may work well on me. (The world of cancer treatment is evolving so much right now. Using genetic profiles, for instance.) Option B is a drug just released last year, and it features an unpronounceable name and potentially severe liver side effects. Regaforamibib, or some such thing. Like the bad guy in a sci-fi film.

We hung up, and Neil and I stared at each other for a while, eyes darting around, half developed questions on the tips of our tongues. There's a sour feeling of impotency that accompanies the arrival of bad scan news. It makes me want to run 20 miles, to move, to DO something.

We piled the kids in the car and drove to our nearby beach. They whooped with the excitement that comes with ignoring an impending bedtime. With the windows down, the warm summer breeze blew through the car, and the radio played "Against the Wind", by Bob Seger. I listened to the words:

"And I remember what she said to me / How she swore that it never would end 
I remember how she held me oh so tight / Wish I didn't know now what I didn't know then 

Against the wind /We were runnin' against the wind 
We were young and strong, we were runnin' Against the wind" 

I shook my head and chuckled quietly, having never identified with Bob Seger lyrics until now. At the beach, the kids hollered and ran and dug in the sand. Neil and I sipped beers, stared at the water, and had a talk. And in that hour or so, we found our resolve.

So here's the deal, here's how I feel: I am strong. I can take these punches. I am going to continue to attack this thing with everything I have. And I have a lot of options left. This thing cannot break my spirit.

When we got home, we overheard the kids chatting happily in the shower: "We had a great day, didn't we?"  "Yes! This was an awesome day!"      Sigh. God bless 'em.

Wednesday, June 5, 2013

No news yet

My doc was out of town on Monday, and he's probably been buried with work the last few days. I haven't pestered him about it, because sometimes ignorance is bliss. Is that unhealthy? Maybe. But it feels happier. And with all this sunshine and happy stuff around me, I'd rather just slide ignorantly into that world and live there for a few days. Besides, there's nothing I can do differently to change things between now and knowing.

In any case, I have chemo tomorrow, so I'll know by then.

I've been swimming. I'm getting stronger, and I have a tan. I've got some new chinese herbs. "I've got twenty dollas in my pocket..."

Sunday, June 2, 2013

Blog hiatus over

Hi. I haven't posted in months. For some reason, I didn't feel like writing. BUT I'M BA-ACK.

Since the last somber post, I bounced back from both the shingles and the broken arm and all the associated malaise that goes with being under the weather while doing chemo, and I'm feeling very happy and well again. There was a trip to Sonoma with Neil. A trip to the San Juan islands with family and friends. A big college girlfriend reunion at my house. BBQs. Bike rides. Swimming, at least 3 times a week! Bike rides. And best of all, the thing I treasure most: loads of special time with my lovely kids, who I adore more than words can express.

Once again, I feel peaceful and content. Balanced even, despite the bi-weekly chemo interruptions. My life is really a happy thing-- with that one lil' exception. Even chemo has been easier for me these last few months. And I've been bouncing back faster afterward, too.

Maybe I haven't written because this blog feels like a tether to the world of cancer, and yet my life lately has felt increasingly far from that world. And why would I want to merge the two. Sometimes, a girl can only do what a girl can do.

Anyway, tomorrow morning I have a PET scan. Haven't had one of those in a while. It will show us how well I'm doing now that I've been back on Folfox. It will show if the tiny tumors have grown, of if they are regressing. I'm going to try not to spend the next few days with a knotted stomach, awaiting the results, with a bursting heart at the mere sound of the phone ringing. If you've never had cancer or another serious medical test which has yielded devastating results, or you've never had to receive really bad news, you might not know the experience I'm about to have this week. I can't really put it into words. I'll just say that the scan experience requires big-time, industrial strength emotional armor. I've had a little talk with myself about how I'm going to approach the week and come out the other side unscathed. I've got a strategy.

I'm feeling strong now, emotionally. I feel great, physically. Please, oh please, oh pretty, pretty please, let me be able to deliver you some good news in a few days.

Wednesday, March 27, 2013

"What's brown and covers a roof?"


Why, yes! AND, they're also my latest ailment. That's right, on top of everything else, I've learned I have shingles, too. As annoying as it might seem, me developing yet another condition, I was actually glad to hear the news. I'd been frustrated by the fact that, for weeks, I was in miserable pain. My back and neck were just on fire, and nothing seemed to help. I'd wake up and rub them for hours in the night.  It made no sense, these extreme muscle aches, but I just figured it was part of the hellride, get used to it.

Then, I noticed some of the front of my hair started falling out. I wasn't on chemo at the time, so that didn't make sense.

THEN, I developed a rash on my head. It looked like someone whacked me with a krobar. After 10 days, I visited the dermatologist, and voila. Shingles. So that explains everything. (Except the hair...?)

I think that last chemo I was taking, Irinotecan, was the devil. Not only did it not work, it gave me the worst crop of side effects I've ever had. (Ulcer. Shingles. etc.) With Folfox, even though it's downright torturous for me to receive, it doesn't wreak too much havoc on my life when I'm off it. I like the 2-week interludes. Life feels almost normal then! Truly.

Today my son turned 5. Milestones like this inevitably make a slice of me wonder "how many more will I live to see"-type things. Ptth. Not fun. I don't feel particularly stalwart right now. Where's my resolve? How have I let it slip?

Sunday is Easter. Monday I head back to Ohio for spring break. I need to focus on my health again. Mind/body/spirit. Find my game face. Where'd it go? I feel I've been off in the weeds this past month. I feel all over the board. I've never felt this scattered in my approach to fighting this disease. I don't know why.

Friday, March 15, 2013

Results in

The genetic test shows I am not "wild", so I will not be getting that new chemo, Erbitux, the one that would cover me in a rash. I'm going to go back on Folfox. I can't believe it. (see my previous post about being the worst patient ever). We never really determined that Folfox definitively stopped working for me, since I was on reduced doses due to surgery. So now we'll try again, and scan me in a few months.

Off to chemo. See ya Sunday.

Wednesday, March 13, 2013


Hi all,

I've been otherwise occupied the last few weeks (visitors! my 39th birthday! parties! etc!) but I do have a lot to report.

I haven't started the hell-zit chemo, aka Erbitux, yet. In fact, last week when I went to my chemo appointment, they sent me home. (First time ever for that. What a strange feeling it is, to leave without getting your weekly poison. It was a reluctant 'Get out of jail free' card. I didn't want chemo, but I NEED the junk, right?)

So, why? Well, in order for the Erbitux to work, a person has to be classified as "KRAS wild type".  If you aren't "wild", the drug just won't work on you. You learn whether or not you're "wild" by doing genetic testing. I've had some of that done. However, I didn't recall hearing anything about "wild type" from that report.

Thanks to a letter I received from THIS BLOG (Hi, Barb!), I learned about the Erbitux/KRAS wild type connection. We asked my doc to confirm I was "wild". He said I was. But, upon further review, he could not actually find documentation that I had been tested for this. SO, he re-ordered the test. They had to pull my old tumor block out from its icy storage place and do the test. I'm still waiting to hear the results.

Bottom line: If the results don't show me as "wild type", I won't get the effective-yet-awful-zitty chemo.  It's a hard thing to say, but I DO want to get that chemo. Because it's supposed to WORK.

Hopefully I will find out soon. I've been waiting a week for the answer. It's hard to wait, knowing your tumors are only growing as you do wait. If I end up negative, I will move down the line to the next chemo, most likely one that is statistically LESS effective. You can imagine how that makes me feel.

What a hellride, this.

Thursday, February 28, 2013


The scan wasn't so hot.

Almost all of my little spots have grown just a tiny bit. They are still small, just centimters big, but it's the wrong direction. Damnitall, because this was supposed to be a really good, effective chemo. This is the first time something hasn't worked for me, and that fact has left me reeling a bit. Since diagnosis, we've always had this sucker more or less under control.

So, I met with the doc today to discuss options, and he is adding a new drug to the current chemo I'm taking. It's called Herbitux (sp?) and it makes the chemo work considerably better. I asked him if it makes the chemo work better, why wasn't I taking it before? He said, "Side effects." Oh great. I asked him what the side effects are. "Skin rash". What does that mean? "Severe acne, could be all over the face, or the body, too".  Oh, and "Diarrhea and water retention."


Thing is, I don't have a choice, do I. So, I get to spend the summer as a pizza face. With thin, lifeless hair. But that's all surface stuff, isn't it. I have to be the bigger, less vain person, and do what needs to be done. It just feels like after all I've been through, could you at least keep my looks intact? Please?

I'm still waiting to see what important life lessons I'm supposed to be learning from all this. None of this has changed my values, added perspective, or made me less of an asshole than I was in my former life. People have told me many times that that's what having cancer does for you. (Insert chuckles from Shelly here. They know EVERYTHING, don't they!) Ok, now I sound bitter. I'm not. Just sort of shaking my head over here.

I'll get scanned in two months and if this doesn't work, another option is to go back to the chemo I was on before, FOLFOX, because we don't know for sure that it stopped working (I had been on reduced doses due to surgery). Oh, and now I get to go in for chemo EVERY WEEK.


Tuesday, February 26, 2013

Shelly, green and leafy once again

Things have looked up for me since my last grouchy post. Sure, my arm's still broken. And yes, I do have a big scan tomorrow (important b/c it's the first time we'll know if this new chemo is working for me). So I've got that + waiting for the results (my LEAST FAVORITE THING EVER) ahead of me.

But for some reason, my spirits have risen lately. I feel happy and light again. An abundance of warm, cozy experiences have surrounded me of late, and I am again reminded how sweet life is.

Three years ago, just after I was diagnosed, I met with a feng shui master, an elderly Chinese man about as tall as my ribcage. We spent hours together, and we are friends to this day. He brought me, among other things, a plant intended to bring me good energy. The plant lives simply in water, and in the days since I took over its care, it has thrived, easily doubling its height. However, in the time since we've moved to our new house, it was somehow left in a back corner. Then, for a month while we remodeled the kitchen, it lived in that frigid room. Just a week ago, Neil and I found it. We both gasped at its condition. The once abundant green leaves had turned crisp, yellow, and spotty. We moved the plant to our bedroom, and just tonight we pruned off the deadness. I noticed a lone shoot at the top, healthy and tall, just peeking out. Recovering. Bouncing back. I know it's crazy, but we both consider that plant to be a tabletop manifestation of my health. It's taken a kick in the shorts lately. But we're both coming back.

I honestly think this scan is going to bring good news.

Wednesday, February 20, 2013

Broken Wing

Ack! I broke my arm over the weekend. Yes. Yes. That happened. So.

Stupid ice skating crash, 0% of the fault being mine. If that counts for anything. So I am typing with one hand (INTOLERABLE), and this post shall be short. and full of typos.

Other things happening here this week: kids off school all week. i can't dress myself, open jars or doors, bathe normally, or... do much. but it turns out, i'm nonetheless using my gimpy arm as much as possible. also, i have an ulcer, which really sucks at times. Badly. Trust me on that one. my husband is sick with flu. got a friend recently diagnosed w/cancer. and--chemo tomorrow.

when it rains, it pours.

also, i have a scan next week.

looking at my recent track record, you could either say i'm doomed to get the suckiest results i've ever had,
i'm due for the best friggin news Swedish Hospital's PET/CT department has ever given a patient.

off to bed now, in my brand new king-sized bed.

Monday, January 7, 2013

"Worst patient, ever"

I am an overachiever! A winner! Here's how:

Thursday, when we met with my doctor before I started the new course of chemo, I asked him, "Will this chemo be easier on me than my old kind?"

He replied, "It couldn't be worse."

So I said, "True, that was rough. I had some pretty bad reactions, didn't I?"

He shot back, "Shelly, in my 40 years of doing this, I have never had a patient react worse than you."

This silenced me. I stared at him, trying to digest this. "What do you mean?"

He continued, "I've never, ever had to hospitalize anyone else for oxalliplatnin. I've never seen anyone sicker than you would get."

I stared at him longer, contemplating this bit of information. My oncologist, one of Seattle's finest, with his bulging client list, seeing hundreds of people a week for forty years, and I'm the WORST REACTOR HE'S EVER SEEN?

Huh. So... you're telling me... IT REALLY DID SUCK, WHAT I WENT THROUGH.  Disbelief, peppered with a strange sort of validation.

He said, "You can close your mouth now." 

Wanting to be perfectly clear, I asked, "So, compared with other people, in terms of how bad it was for me..."

He cut me off, "Shelly, on a scale of 1-10, you were a 31."

Well, now. Look at the big balls on Shelly. All those times I felt like a prisoner of war, strung up by the arms in a dark concrete room (Ok, yes! Dramatic. But I truly sometimes experienced visions of torture scenes while I'd be experiencing this stuff. I've seen the show "24". I know what a North Korean prison looks like.) And it turns out, I was right. It was really, in fact, THAT BAD. Not that I ever doubted it. But it sure is nice, when you've been dealing with something brutal for a year and a half, to have someone "in the know" acknowledge it. In a world where we never celebrate (or even really acknowledge) toughness or endurance (not because he's unsupportive, but more because, it's expected of you, it comes with the territory, it's not a "bonus, extra quality"-- it's essential)-- anyway, in this sort of world, I feel like I received an exotic, bright (if fleeting) piece of news. It was like an opal-rumped tanager or a Swainson's Lorikeet, or even a purple-headed glossy starling, came flying through the room, then left.

He also told me he loved me. So I have that going for me, as well. 

Even the chemo nurses told me they would shudder when they saw me on the day's schedule. Turns out I'm a neat person to know!

And how did my new chemo go? The act of getting it was a breeze. No IV morphine required, for a change. I felt well that night, too. Then, out of the blue, I barfed rather violently. Friday was spent in a chair, not eating a morsel, watching TV, trying not to puke. Feeling sick in the gut. I watched "Footloose" for the first time ever. And several episodes of "Snapped". Etc.  Saturday I felt much better. But alas, I have to do it again this week. My new schedule is Thursday on, Thursday on, Thursday off. Thursday on, Thursday on, Thursday off. So it's more frequent than my old regimen, but probably less days overall where I'm totally out of commission.

I asked him how long I could expect to be on chemo, knowing he can't answer at this point, and he told me that 9 months might be a place to set our expectations. 9 months plus the 15 I just completed. And! I probably will NOT lose my hair, so we have that going for us as well.  I can do this.

Wednesday, January 2, 2013

The kids are alright

My daughter is 6. We've talked about cancer and chemo with her before, although as she grows, we find ourselves having to go over things again with her. And with each revised conversation, there are more questions, as one would expect from a child with a quick, ever-developing mind.

You never know when your favorite person in the world is going to blindside you with a hard-hitting, gut-wrenching question. And your answer is as vitally important as the question itself. So you have to be ready, at all times. The way I navigate that minefield is by simply offering her the truth.

The truth, wrapped in a soft cozy blanket.

Today, as we were driving home from swim lessons, she asked me if we could wake up early tomorrow, just the two of us, so we could play together before school. Aww. A request as sweet and benign as that made the reply a bit tougher to muster. "Well, hon, we could get up really early to play for a little bit, but Mommy DOES have to leave early because I have chemo tomorrow."

Her response was passionate. "What? NO! WHY? NOT AGAIN! I THOUGHT YOU WERE TAKING A BREAK FROM CHEMO! I HATE CHEMO! PLEASE DON'T GO TO CHEMO, I HATE IT SO MUCH! IT MAKES YOU SO TIRED!" Insult to injury. I told her that I hated it, too, and it was no fun, but it was what my doctor said I needed to do now. She grimaced and complained some more. Then a smirk spread across her face, and she asked, "What if your doctor told you that you had to get a new TV? Would you do that?" We both laughed. I told her I probably would. The car got quiet. Then she asked, "Wait...WHY do you have to do chemo again, anyway?" Ugh, not this one again. So I told her, "Well, it's medicine, remember how we talked about this? It's for that thing mommy has, that thing called 'cancer', remember? Cancer is a kind of sick. Chemo helps keep the cancer from making me get sick. It's stupid, I know, that I have to take medicine for THIS LONG, but that's the way it goes." She thought about this for a second, then said, "Mommy! Did you remember to pack my ponies in your bag?" Ok. Cancer conversation complete, I guess.

So she's up to speed. And she seems ok with it. Her biggest concern is my fatigue. She isn't aware of the big picture yet. I'm grateful for that.

And yet, I think she senses there's a fragility to me, almost as if she feels I'm a precious gift she doesn't want to take for granted. Toweling off after her bath tonight, she told me, "Do you know how I spell 'love'? It's 'M-O-M-M-Y.'"

I will never stop fighting.

The worst in-law, ever

Tomorrow is January 3, and I will begin a new type of chemo. It's called Irinotecan.

No more FOLFOX, the chemotherapy with which I've become intimately familiar over the past 3 years.

It's really peculiar, the whole "getting used to" a specific type of chemo. It's a forced relationship with a really bad apple. It's like learning how to deal with a particularly offensive in-law: Against your will or better judgement, you must spend hour upon hour of otherwise productive time in their annoying company. You learn to navigate through their quirks and how to steel yourself against their many unpleasant attributes.  In the case of chemo, it means you learn massive amounts about puking and forced fasting. And pain. You learn to pack Kleenex with you for the times your nose starts bleeding in public. You learn to stiffen your upper lip while you're being injected with a wasp-sting shot in your stomach. (Why complain? What good will it do?) This and so much more, you learn.

I just did a quick search on the side effects of Irinotecan. They sound pretty abysmal. The one I'm least excited about is probably the hair loss. Alopecia. It looks like my hair will likely thin, and I could even lose it. For all the BS I've endured thus far, I haven't lost my hair. I always took comfort in that. Losing hair from chemo makes you stick out like a sore thumb, and you then have to deal with people's unstable reactions, 24/7. For a person like me who spends too much time considering others' states of mind, that would be a real burden. An unproductive, bad use of my energy. Just writing about hair loss is making me depressed.

On a less superficial level, there can be other, more serious side effects, though I won't know what they are til they happen. It's not the most settling way to enter the new year, wondering if the poison you're going to be getting will be a little "too poisonous".

Anyway. Not the most uplifting post, but there you have it.