jeff_in_pittsburgh

Hello everyone,

My name is Jeff, and I was diagnosed with a Klatskin tumor in November of 2015. It all started with the pruritis (itching) that a lot of us have experienced, and I went from itching and slight jaundice on a Saturday to a (primary care) doctor’s appointment on Monday, an abdominal ultrasound Tuesday, an MRI Wednesday (the day before thanksgiving), an ERCP and stent placement Friday, and a CT Saturday. They did a second ERCP a little more than a week later (one of the stents wasn’t placed correctly) along with a biopsy, and just like that, I went from a healthy 43-year-old to having cancer.

In January of 2016, I went to Mayo for a liver transplant evaluation, but they discovered the CCA had metastasized to regional lymph nodes, making me ineligible for their protocol. It was crushing news, but that allowed my team in Pittsburgh to get started with treatment. In March 2016, I started 5 cycles of Cis/Gem, in May I had a portal vein embolization in preparation for a liver resection, and in late June two surgeons removed 3/4 of my liver (along with my gall bladder and most of the affected lymph nodes) to get all of the affected bile ducts. For those familiar with resections, the only “good” segments of the liver were 6 and 7, so this “left extended triseg” was pretty rare. Margins in the liver were negative, but there were still positive lymph nodes. That led to chemo-radiation (Xeloda) in September.

Things were looking okay until a pseudo-aneurysm in my duodenum nearly caused me to bleed out in November. The radiation had (unbeknownst to my medical team) caused several ulcers, and I went from feeling fine, to passing out and falling down a couple stairs almost instantly as a blood vessel ruptured and started emptying into my GI tract. I lost 2 liters of blood in minutes, and it was only due to my family being home to call 911, a short ambulance trip to the hospital, and a brilliant trauma team and interventional radiologist who stopped the bleed that I’m even here today, that and 12 units of blood and a week in ICU with some fabulous medical staff.

A planned return in the spring of 2017 to systemic Cis/Gem was hit and miss because my marrow was pretty beaten up resulting in very low blood counts (neutrophils, H&H, and platelets) to the point where I couldn’t get treatment for weeks at a time. Eventually, my medical oncologist had me get another staging PET/CT, and I got the best news anyone affected by CCA could hope for, no evidence of disease. The liver was still clear, and the radiation and chemo seems to have taken care of the regional lymph nodes. Distant lymph nodes and other organs also appeared clear.

I’m still dealing with some complications of the surgery. A recent endoscopy and PET/CT showed I have portal hypertension. The portal vein isn’t flowing through the liver remnant (which isn’t as big as they expected it to be by now, more than a year post-surgery) causing blood to back up into the spleen. The spleen is enlarged and is apparently partially to blame for my low red and white counts, so I have an upcoming appointment with a hepatologist to see what is going on there.

Like a lot of people affected by CCA, the initial reading I did about mortality rates was truly terrifying. I was less concerned about myself than with missing out on my kids’ (now 12 and 16) growing up and growing old with my wife. Thankfully, I was very fortunate at many steps along the way. I have a very supportive workplace (no questions asked for a half-dozen hospitalizations) and colleagues, fabulous insurance, and a brilliant and caring team of medical professionals. Friends and family have supported my immediate family in ways that reaffirmed what wonderful people I have in my life, and of course it doesn’t hurt that despite the setbacks, I’ve caught a medical break now and then.

I lurked on the forums here for a while immediately after my diagnosis and as I looked up information about each phase of treatment, but I didn’t feel compelled to post my story. After joining a Facebook CCA support group, I saw a post asking for volunteers to talk to folks who were newly diagnosed, so I decided to get more involved and try to “pay it forward.” So this is one of my first steps in that process.

Thanks for bearing with my lengthy introduction, and thanks to many of you for providing models of bravery and support in the face of a truly horrific disease. I know there’s been some discussion recently about whether “fighting” is the best metaphor for how we deal with cancer, and I’ve already gone on too long here to even address that, but one of the guiding principles that has led me since my diagnosis is what Stuart Scott said as he was battling his own cancer: “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”