Tuesday, June 10, 2014

Top of the Fifth ~ June 08, 2014

Wild PitchAh, the battle of the titans: Best Laid Plans vs. The Monkey Wrench Gang. We thought we might have most of June and July to hit the road, but avast mateys we've hit a wee snag.


Razzafratz ~ On May 28th I had my quarterly CT scan to check on resident tumors, Audrey and Carmine. Well, it seems Audrey found a way to escape her chemotherapeutic bondage wrap, picture muffin top over the bikini bottom. There is an area about .50 cm wide (that's about a 20th of an inch) that is lighting up on the scan. My doc called after talking to UCSF Interventional Radiology. The spot is easy to reach and the recommendation is that I return for another TACE. My appointment date is June 27th. Not at all happy about this development but it is what it is and keeping my tumors in check until Fall surgery date is a priority. 

Hot off the PressI met with the Hepatitis C Clinical Pharmacist on June 6th to get more information about the drug therapy I'll be starting sometime in August. It is a combo of Ribivarin and Sofosbuvir (now known as Sovaldi, the new warm and fuzzy name that patients can spell and pronounce). There is a good chance this dynamic duo can rid my system of Hep C before the transplant, but until we find out how I tolerate the medications we'll probably stay close to home. The other good news is that my insurance will cover the costs other than my normal copays. This is a huge load off our minds. 

We're Outta Here (Thank you Duane Kuiper) ~ We have a window of opportunity the next few weeks before the proverbial shit hits the fan so we be outta here.  On Wednesday we're taking off on one of our infamous Shall We Turn Right or Left Tours: back roads and blue highways. We'll probably be off the grid for most of the time, but will take good notes and lots of photos so stay tuned. 

Wednesday, June 4, 2014

De-Liver Me ~ The Update ~ May 27, 2014

Off to the City to meet with the Viral Hepatitis Team at UCSF. We have an opportunity, not available until last Fall,  to rid my system of the Hep C virus. The new drug combo of Ribivarin and Sovaldi (formerly the unpronounceable Sofosbuvir) will be the key. The goal is to have the virus undetectable in my blood for the four weeks prior to surgery. 

It's difficult to predict the exact date of a transplant, but based on the quarterly award of points (April number at 31, end of July to 33, end of October to 34) I should be near the top of the list in October. One needs to remember the "top of the list" may vary with the number of organs available at any given time. With that in mind they want me to start me on a 2-3 month course of this drug combo in August. The potential side effects are mild by most accounts: fatigue, headache, nausea, rash, insomnia and irritability. I just spoke with an acquaintance who experienced non of the "potentials" during treatment so I'll run with that. 

Speaking of irritability, we attended a class In October to prepare us for what to expect from the time we get the phone call to head for UCSF because a liver is waiting until we return home after surgery. After the transplant I will be on immunosuppressant drugs for the rest of my life. There will be no convincing my body that the new liver belongs there. The list of "potential side effects" reads like menopause on steroids: mood changes, irritability, acne, increased facial hair growth, increased appetite, decreased metabolic rate, and hallucinations to name a few. Oh Baby! I did waltz though menopause with one night sweat so maybe I can do it again.

Clown Figurine, By House Global Art
Lennie the Lion Tamer

That night I had a dream that woke me up laughing. There was an old fashioned jail house door in place of my bedroom door, the kind with the pass through to set a plate on at meal time. Rod had leather gauntlets on both hands, my breakfast plate in one hand, and a whip in the other "Get Back" he said "I have your breakfast". I must have been in a mood!

We are hopeful I can be off the proverbial leash in June and July so we can take a road trip or two. Stay tuned.