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.