Introducing my husband & his cc diagnosis

My husband’s primary care physician retired and it took 18 months to locate a dr. that would take him as a new patient. Rod had just turned 66, and has a 40+ year old ileostomy which was because of ulcerative colitis. At his initial consultation with new doc, in Sept 2014 the doc’s final comments were “It looks like you have a long healthy life ahead of you. We’ll just wait for the blood work to come back.” Well, the blood work showed problems with liver enzymes.

Rod was pre-diabetic, but controlled it with diet, exercise and supplements. Had been loosing a little weight, but attributed that and his fatigue to a heavy work and travel schedule. The following week the CT scan technician was certain what he was seeing was cancer, and further testing culminated in biopsy confirmation in mid-Oct. of a 5-6 cm tumor of bile duct. At consultation with liver specialist/surgeon first week of Nov., in Wichita, a 4 hour drive from home, we were told that because the (intrahepatic) cancer involved both lobes and was centrally located around the portal vein and high in the bile ducts, surgery was not an option, unless Rod was lucky enough that chemo would shrink it to one side. We heard then for the first time that ulcerative colitis was a high risk factor for this cancer.

Port installed 2 days before Thanksgiving. Chemo delayed until Dec 5 because of family & work commitments. I had to be out of town with our daughter for college scholarship competition, so Rod was on his own – even drove home by himself – about 2 miles in town. Felt no effects, other than being so sleepy he didn’t hear my first 2 calls home to check on him. Second treatment was scheduled for the following week, but his bilirubin level was at 12, so they scehduled him for placement of a stent on the following day, in Wichita.

The intervention radiologist had a difficult time getting the stent through the hard tumor, and Rod felt like they had been shooting progressively larger bullets into him. He was given 2 pain pills before they wheeled him out to our van. He lost everything to the barf bag before I pulled away from the hospital. Fortunately, we still had pain meds at home left from the port installation, but it was a very long and painful 4 hour drive home. Next day called oncologist for stronger pain meds because the oxycodone wasn’t cutting the pain. The following Monday’s blood work showed bili still going up, so we were sent back to Wichita for stent in left lobe. Because of the difficulty of the first time, he was admitted and they inserted a stent in left lobe, plus one in periphery of right lobe to drain fluid built up there. Released on Friday before Christmas, but this time we did not drive home, but stayed at hotel.

Monday’s tests showed Rod was dehydrated so cancer center provided intravenous fluids for the 3 days before Christmas. Day after Christmas, Rod started with fever and chills and shaking. We ended up calling 911. Turned out he had a major infection in blood. He spent 3 nights in ICU, not expected to live. My son turned 21 that weekend. Following ICU where the nursers were excellent, he spent 10 days on regular floor, training nurses about catheter and ileostomy care. ICU nurses were great, regular floor nurses also, but less familiar with all the tubes, etc. that Rod had. We had lots of people praying for us.

When Rod was discharged in early Jan, it was to hospice care, and chemo was no longer considered an option, because they didn’t think Rod’s system would tolerate it. Actually we were pleased that we could have him home and he could sleep as long as he needed to, and not be awakened in the early morning when he sleeps best. And we could prepare foods he could eat. Rod’s sister is a Naturopath practioner and has been working with us.

Hospice care was great, but did not allow us to stay with it and go in for catheter replacement. So we rescinded their care and I have been doing all the nursing care, preparing meals, etc. We have gone back to Wichita several times, for “catheter maintenance.” Our original liver specialist retired at the end of Jan, and we met his replacement once, for a few minutes, after one of the replacement procedures. The intervention radiologist can change every time. We have gone back to oncologist, not for chemo, but for what I call enhanced pallative care, in that they will order the labs, pain meds & antibiotics if necessary, and call Wichita to schedule any catheter maintenance. Problem is, they are not very knowledgeable about this cancer, and treatments. We’ve gotten good info from a friend who has been fighting it for 4-5 years, but hers was much smaller when found.

I’ve also learned from reading other posts in the last 2-3 months before I registered. Thanks for listening.