Wednesday we headed out to the university at lunch time, since our Hepatologist had requested a consult.  We took the train, and then a bus, cutting our cost per trip from $68 with Taxis down to only $26 for the two of us.  Unfortunately, I had pulled the bell and we got off the bus early which meant an extra .5 mile walk up a steep hill to get to the transplant center.  Going painfully slow, my hubby was worn out and out of breath by the time we got there.  We picked up lab paperwork, and walked down to the lab for blood to be drawn and tested.  After we made it back to the transplant office, we were rewarded for our efforts by a 40 minute face-to-face case review with the doctor.

My husband gave a speech about having so much to live for, and wanting to see his daughter graduate college and grandkids someday.  He asked the team be agressive as possible, he's willing to do whatever it takes.

At the end of the day, what we discussed included:

1. Pancreatitis is often caused by gallstones, however there have been cases reported with use of the drug Nexavar. The gastroenterologist has recommended a few times to have the gallbladder removed, and this would remove the largest variable thus reducing the risk of the pancreatitis happening again should we decide to start the medecine again.   
2. IF the TACE treatments left a small area of question, the team could consider localized radiofrequency "burning" to kill viable tumor tissue and remove the gallblader via laproscopic procedure at the same time.
3. Hepatic encephalopathy doesn't have a direct correllation with the ammonia blood levels, so regular monitoring has limited value, however once these symptoms are present it is important to keep on the daily dose even if 'feeling better'.  A patient should be evaluated in behavior and body function before titrating (adjusting) the level of medication to take to treat symptoms.  With the Lactulose, its essentially a couple sugars bound together that the human body doesn't digest, so you can take more without cause for concern other than distance to the bathroom when you experience it's explosive results.
4. Anyone showing symptoms for hepatic encephalopathy shouldn't be driving, and at the very least have an alert passenger if there is any concern, as they could inadvertantly drift or be too slow to react to situations putting lives at risk. 
5. Our hepatologist would no longer be coordinating our case, it would be transitioned to another member of the team, however we would continue with current care & course with the university.
6. Last and most important, we were on for Friday's TACE treatment.

Friday morning came quickly and the process had changed just a bit since this procedure would be done under a general anesthesia.  We were shuffled around with hospital admitting interviews, vitals, and an extensive screening for current medical history for the anesthesiologist followed the wait in pre-op that seemed to take forever.  As they started to wheel my husband away on the gurney, I was told he wouldn't be coming back to the same place he had before, and they recommended I wait downstairs in the surgery waiting center where there was cell reception for any updates.

After waiting the 90 minutes estimated for surgery, I started asking the attendent to call for status, and kept calling every 30 minutes until I was told I could come up to post-op.  There I found him in the closest bed to the door, surrounded by curtains that had been clamped together for privacy; my first impression was he was completely naked except the bundled up blanket and towels on his groin, BP cuff, IV and monitors for heart rate.  His lower legs and feet were exposed with his toes holding up a pair of hospital socks so they could quickly check his distal pulse.  He still had an hour to be still, so I found a chair and scooted it between him and the wall so I could be close.  He told me about a doctor who told him they didn't find a 2nd tumor after all, but wasn't sure, he could have been dreaming.

Right on schedule at 6:00pm, 11 hours after arrival they moved us down to the overnight stay unit.  The staff was as friendly as could be again and the nurses from last time welcomed us back.  Since it was a Friday night the unit was about half full, and very quiet.  There were no complications, blood pressure was only slightly elevated and he slept well.  I crashed on an empty bed next to him with the blanket the nurse had given me.  Quietly through the night they checked on him, sometimes I would open my eyes and watch, comfortable with his care there was no need to get up or fuss around. 

The next morning, as I left for coffee the doctor that performed the TACE came in to see our patient.  Not knowing he was there I took my time stopping by the film library to get the hard copy of the results and pick up the CD I'd sent over from the other hospital.  Excited to have results in hand I showed up bedside to get the news I'd missed the doctor.  Both were confirming that there had been no cancer blush in the left lobe when they'd explored that area.  There was a small blood vessel connecting the right hepatic artery to the original tumor site, so TACE #2 was focused on the big lesion again. 

Could it possibly be?  I checked the narrative from the proedure again to see "No additional lesions were identified in the remainder of the liver including suspected lesions in the left lobe.  the patient will follw-up with a CT examination within 1 month". 

Wow.  Really?  Wow.  Not wanting to get our hopes up we talked on the long drive home, if there is only one viable tumor, and its less than 5cm, he's within the Milan standard for transplant.  Well, we'll just have to see.

The rest of Saturday was a sleep day, followed by church on Sunday morning.  In the afternoon he rested while I did some of my honey-do list to prepare for Thanksgiving and drove over to my Dad's for a sanity break.  But late Sunday afternoon my husband was in quite a bit of pain and was hot to the touch.  I confirmed a 101 degree fever and quickly paged the on-call from IR. No worries, I was assured, some fever is normal as a side affect.  Give him 2 Advil and monitor, give a call back if conditions get any worse or do not improve. Panic over, I take a deep breath and start preparing for the week ahead.

So this weeks post is a bit long, as I've not taken the time to do my updates. I look back at the past several weeks in awe.  There are so many paths that we've considered and planned for, that now we wait again for the next step on Tuesday: Tumor Board review.  What will happen next?  What will they see?  Will it be CT or TACE, will that happen before or after meeting with the surgeon for the gallbladder removal? 

I looked up a verse from the Thanksgiving message in church today, that I highlighted thinking it appropriate
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight (PB 3:5-6). 

However, it was the next verse that kept drawing my eyes to the page
Do not be wise in your own eyes;  fear the Lord and shun evil.  This will bring health to your body and nurishment to your bones. 

With this Book of hope in hand, I head off to join my hubby on the couch.