Sorry about the dearth of updates on the the De-Liver Me tour. I was shocked to see my last update was Top of the Fifth dated June 8th. Most of June we were on the Great Northwest Tour, but July and August, that's another story. I didn't feel much like writing and I wanted to wait until I had the whole story before I committed anything to paper. Call it the Summer Smack Down, Sparing with Ali or Who Wrote this Script Anyway?
July 8th ~ TACE #5 I won't say it was the Comedy of Errors, but the day's journey left me scratching my head more than a few times. This wasn't my first Hospital Rodeo, so to speak, but a new patient going through this procedure for the first time might have been taken aback.
Cowboy Kitty
When you change from street clothes to hospital gear you get a stylish set that includes a mismatched set of draw string pants, a top and a light robe. Part of the fashion package should include a pair of skid proof socks. They were out of hospital issue so I had to walk around in my own socks. Good thing I didn't wear sandals that day.
I walked down to the procedure room with my nurse and hopped up on the table. Oh darn, the mechanical and modified computer interface isn't working. I'm listening to the two guys, squatting under the table, discussing options. Might have to change rooms, but they're pretty sure they can get it fixed. Seriously? Kudos to said geek squad they got things up and running in no time.
The nurse who is setting up for the procedure and a soon to be sterile environment was grousing to someone in the background that the supplies hadn't been restocked. The person who usually takes care of these details is on vacation. Really, no one to fill in? This so instills confidence.
The procedure goes well and I'm moved to the outpatient recovery dorm. I'm at the opposite end of the room from the feral ice machine and the self closing door that slams. There is a goddess after all, or so I thought. About 4 am a woman arrives from the Emergency Room, she too has been sentenced to an overnight for observation and is in the bed next to me. As she's being set up with monitoring equipment all possible alarms are going off. The irony of a poster on the wall that says "Shhhh, Healing in Progress" is not lost on any of the other inmates, I mean patients.
Not whining just observations, I can find humor and silver linings in most every situation. The staff, doctors and nurses are outstanding: efficient, friendly and supportive. It just seems like they are sometimes working in less than optimum conditions. It was just one of those days, no harm no foul and some blog fodder to boot.
I left UCSF on the 9th feeling a little under the weather, but that's nothing unusual. These treatments are all in my best interests, but it doesn't mean I have to like it. It only took me a couple of weeks to recover and I'm thinking I'm a pretty tough cookie.
One Tough Cookie
July 31st ~ I had a follow up MRI scan and that revealed "numerous additional foci of enhancement". In English that means nine, yes nine, little points of light that may be additional hepatocellular carcinomas. Shit oh dear, not what I wanted to hear.
August 5th ~ TACE#6 The plan was to be very aggressive with these newcomers. At the time I wasn't sure how that would translate, but all I can say is No Shit Sherlock, it's taken me five weeks to recover. One of the recurrent and amusing side effects of the TACE treatments is that you suddenly have the attention span of a six year old and reading or writing aren't really an option. However, a three week regimen of sleeping and of daytime television will force you out of the barcalounger and on with life, no matter how much it hurts. It was definitely time to cowboy up, dust myself off and move on. In case you didn't know were fans of Professional Bull Riding.
The UCSF Tumor Board recommended follow up CT scan in early September. There was a concern that these were new tumors and if so there was a chance I would no longer be eligible to be on the transplant list. They coded me as "pink" for the month of August, which meant was that if a liver offer came up I would not be eligible. As hard as that sounds they must weigh the benefits and risks and my number is only at a 33, not yet high enough to qualify. I have the most common blood type "O" and transplant numbers often need to be between 35 and 38 before you're at the top of the list.
I was supposed to start Hep C medication in late August. Since the Code Pink took me out of the running for a month I asked my doc if I could delay the Hep C meds until late September. That would give me time to recover from TACE #6 and get in a few adventures while I was feeling good. She said absolutely. Ah, a breather and further evidence that (1) it never hurts to ask and (2) always be your own advocate.
September 3rd ~ The follow up CT scan and THE WAIT until the 9th when the Tumor Board meets.
September 9th ~ Got a phone call from my doc in the late afternoon. The CT was clear, no evidence of my posse of lights. I'm to have another CT scan in December. She said she hoped I would have my liver transplant by then. Yeah Team! It could be mid December if the numbers work out. If that's the case I'm thinking Trisha's birthday on December 15th. I'm just going to put that out there and see what happens.
Jump for Joy
What's next:
Time Out ~ Three days at Emandal Farm outside of Willits for Not Just Cowboy Poetry and the annual Apple Pie Smackdown (must taste many pies and vote on winner) and then to the family cabin at Stinson Beach for a few days. More on these adventures to come.
Clear the Decks ~ Once I have the transplant I'll be on immunosuppressents for life. The things that now wouldn't normally be of concern now because of my healthy immune system will become an issue. Our carpets are 40 years old and the linoleum we installed in 19 ought 90 needs to be buried. In late September we move everything out of the house for a few days while a local company installs the flooring. We box up the books and small stuff they move the big stuff. My first major post TACE workout and maybe a good time to thin out our stuff.
Getting back to normal ~ The hard part of the TACEs and recovery is being so out of shape. I'm back at my high school weight, which is fine with me, but my muscles are following me around like pets instead of actually working with me. Back to walking 1-2 miles a day, but need to look into creating some upper body strength over the next few months. Damn, it's the no excuses tour!
On the medical side ~ In early October I'll start the new drug regimen of Ribivarin and Sovaldi to make the Hepatitis C virus undetectable in my blood. This will continue until the transplant so that the new liver won't have to contend with the virus.
Food for Thought ~ I've learned a lot about myself and those around me: family, friends, doctors, nurses, acquaintances and even strangers with whom I've had brief conversations. All have had something positive to share including prayers. Though I am not a religious person I truly believe the universe watches over me.
