Good News is Bad News

Yes, we went to Stanford today for a regular follow up with the surgeon, the good Dr. Visser. On the other hand, we were loaded for bear to get something going for the back pain or the narcotic fog.

We were in the examination room and the singleton rambling resident came in for the standard preliminary questions. You know you have been spending too much time with residents when you know the answers to the questions before he asks them. And, then you inform him of what he forgot to ask...

Properly adjusted, the singleton disappears. A moment later, a figure appears in the doorway and it isn't the expected Dr. Visser. Instead, its our Oncologist, Dr. Fisher, whom we are scheduled to see on Monday. He apologies for crashing the party, but he saw that Mary was in and he wanted to see her given everything going on with pain. A moment later, Dr. Visser shows up and we can play a hand of bridge!

The good news is that every test run since last October (multiple MRI, multiple CT Scans, the PET/CT combination scan, the bone scan, the x-ray) all point to the same conclusion. There is NO cancer present in Mary's abdomen and spine and from her armpits to her pelvic bone she is clean as a whistle. They even explained they had carefully done "then and now" analysis to seek differences. Why? Cancer is fast growing (out of control) cells so comparing November images to February images should quickly identify items that have grown larger during the four months. Again, more good news--absolutely nothing in any of her images shows growth from then to now. And the blood test, including good old CA-19-9 also indicate no cancer. As an aside, all of these tests have confirmed that Mary's liver is absolutely A-OK, fully functional, good as new. Obviously, this is very and I mean very good news. Back to our statistics, out of the 3,000 cases of cholangiocarcinoma diagnosed in the USA each year, about 100 patients are alive one year later. March 22, 2008 was the day Mary presented the symptoms. It is pretty clear Mary will make her first anniversary and beyond.

But this good news is also the bad news. The source of the pain remains a mystery. It is amazing to see Dr. Visser who last year was so assuring while discussing the risks and odds of removing 80% of Mary's liver now sitting in front of us with a flummoxed look on his face admitting they really could not pinpoint any cause for her pain. And so the Oncology team had no plan and no idea for a plan. And Dr. Fisher contributing to this part of the discussion with "If we could find something, then we could do something whether it be surgery or radiation therapy or whatever."

We discussed the recommendation of the pain specialist and the scheduled Medial Branch Nerve Block procedure on March 3. They both agreed that was the most logical next step and were sorry Mary had to wait so long for the procedure.

I asked about neurontin for pain as suggested by Dr. Coleman, the pain specialist. Dr. Fisher said that it could be added to Mary's pain meds because it does not interact with narcotics. After a bit more give and take, Dr. Fisher left the room and Dr. Visser stayed a bit longer.

Dr. V further explained the "then and now" analysis on the images and his frustration along with Dr. Fisher's frustration with Mary's condition. It was very clear to him that there are two really significant problems. One is the pain. The other is the effect of the narcotics on Mary. He said that when he walked into the examination room, he saw that Mary was not nearly as alert and healthy looking as she has been on previous follow up visits and clearly the pain killers are the source of that condition.

I asked him about initiating Neurontin. He explained that neurontin is a bit of a wild card in its effect on the body. It has to be prescribed and then carefully monitored because too little causes one nasty condition while too much causes a totally different really nasty condition--and, each person reacts differently so its very "touchy" to prescribe the correct dose. A very nice and thorough way to explain that he wasn't going to write that script!

Monday's appointment with Dr. Fisher will focus on how we can attempt the recommendation from the pain specialist for using the neurontin.

As for this week's saga of pain management, after I made the decision to stop the Oxy and go back to liquid morphine sulfate on Thursday morning, they recommended Mary switch from the fentanyl trans-dermal patch to MSContin, a morphine based long-term pain relief medication for her baseline pain. We started that last night and we should complete the transition by late Sunday and we'll see if that helps Mary a bit more than where we are now.

All in all, Mary had a pretty good day today. She ranged from totally clear to woozy and droopy but didn't go as far as "30 minutes after sunset" so maybe we are on the right track.

Finally, I must profusely thank both MaryR and Ingrid for their assistance this week. Until we changed Mary's meds to MS Contin, I felt I could not leave Mary alone and both Ingrid and MaryR jumped in to help so I could head off to key events at work. Thank you, thank you.

And, it looks like Reenie will come back for a visit spanning my cataract surgery so that can go forward. They require I have adult supervision for 36 hours or so Reenie gets to play adult! My surgery is March 17...St. Pat's Day!