Back to the liver

It's been so difficult, I'm not going to pretend it hasn't been. Thank you to anyone who's helped out or sent food, a card, a quick message, or a text. I realize I'm not getting back to everyone, but sometimes it's just really tough; I hope you understand and please don't be upset.

By now most of you know the results of my original biopsy: cancer. I want to update you all on where we are at today, but I'll keep it short because it's still hard to talk about.

All the way back on July 17, the day our lives forever changed, we got the news. My biopsy from my abdomen suggested adenocarcinoma of the ovary, so we were whisked off to a gynocologic oncologist—which is a mouthful. He did an exam, took a biopsy from the endometrium, and I came back the next day for exploratory surgery to find out where this cancer is coming from, what is the primary source. That all went well, and I was back home that night.

Last week, on Tuesday, we finally got the results back from the things he biopsied from that. The biopsy from my endometrium came back negative (benign)—so that's good—but the rest of it was a mixed bag. My tubes were negative, other endometrial tissue was negative, but the right ovary had a few cancer cells on the surface, and another area did too. These were suggestive for hepatobiliary or breast cancer.

Breast cancer is very unlikely at this point; nothing on any of my scans has shown anything going on in the breasts. But, all of the scans have shown the mass in my liver. Most likely we are dealing with intrahepatic cholangiocarcinoma, which is basically what all of my imaging (the CT, the MRI, and the PET) have been pointing to. So back to the liver we go.

To break down that medical term: "intra-" meaning "inside", "hepatic-" meaning liver, "cholangiocarcinoma" meaning "bile duct cancer." So basically, this is likely a cancer that started inside the bile ducts inside my liver.

But to confirm this, we have one final hurdle, which is a liver biopsy. And that's where we're at: trying to get me set up with a liver guru to get this done asap. My doctor also referred me to Siteman Cancer Center at Wash U to see if they have any clinical trials that might apply to me.

If there are no clinical trials for me, and as soon as we get the biopsy results, we will start chemo. It sounds like it might be rough, but really what I've learned is that chemo is kind of unpredictable and affects everyone differently. Some people sail right through it, others have more side effects. No one knows until they try.

Yesterday was a really tough day, though. My doctor's appointment brought back up so many emotions and it was a day full of tears.

Daily, sometimes hourly, I waver between being terrified and then having faith that God will continue to take care of me.

So please keep those prayers going. Pray we can make this go away. I don't know if it's possible, but in times when I'm feeling hopeful I keep remembering how I've defied the odds before. By all intents and purposes, I shouldn't be here right now. When I was born, I wasn't supposed to live much past 18 years old. And 5 years ago, when my lung function dropped so much, conventional medical wisdom would tell you my lungs should have kept going downhill and I would have had a transplant within 1-2 years. But that didn't happen. Not even close. My former doctor, Dr. Kouba, once told me I was "an odd bird" in how much I've been able to keep going like I have. My only hope is that the chemo will work and I can keep on being odd. :)