Friday, August 30, 2013

Top of the Fourth ~ August 30, 2013

We drove down to SF the morning of the 20th for my TACE procedure rather than going down the night before. Let's face it SF is a noisy place, especially when the only night sounds you're used to are crickets and the occasional owl. We left about 5:15am and got to UCSF with time to spare. Rod headed home that afternoon and came back late the next morning to pick me up. TACE IV is in the books. This one was to take care of the small spot that had been seen on CT Scan in December. They weren't sure it was a tumor but were going to treat it as one. 
Elephant Handstand Pendant Necklace Vintage Circus Jewelry Pendant Elephant Pink Resin Pendant
I had no idea where this little gremlin was located but when the pain medication began to wear off I had a general idea. I love elephants and all I could think of was a little circus elephant doing a handstand in the middle of my chest. It's taken me 10 days to get back to almost normal. I'm still getting a residual twitch every once in while, but have started walking again.
Divine Jubilee 13 x 19
Devine Jubilee
The great news is that this was my last TACE, at least for the time being. We'll meet with my doctor in November. The earliest I can expect to reach the top of the liver transplant list is September 2014. As long as my liver continues to function well and Audrey II remains in check it's okay to wait.

However, if the tumor continues to grow, TACE's are not the solution. My doc
has asked us to consider a "non-ideal liver" so that I don't have to wait so long for a transplant. If I opt into the program and don't feel ready to take a higher risk at the time, I can decide to wait for another liver. Doing so will not affect my status on the waiting list. The risks and benefits of this decision may change over time if my liver gets sicker.

Off the leash for awhile and looking forward to blue highways and camping under the stars. We're planning to take off September 25th (Happy Birthday Rod) for a couple of weeks. It's time for us to wander. We've definitely earned a time out.

Thursday, August 22, 2013

A Step Forward ~ Aug 17, 2013

As I mentioned in an earlier blog, it's important to be your own advocate: to continue to ask questions, take notes, and do research. The reality is you need to watch out for your own ass.

Donkey - 3D Metal Art Sculpture - Grinning Garden Decor
Grinning Donkey
On August 12th I met with my doctor at UCSF for the first time since the initial interview in early April. It was an encouraging and informative session. I did my homework beforehand and had a list of questions for her.
We were initially lead to believe that TACE (transarterial chemoembolization) treatments were to keep the tumor under a certain size so I could remain on the liver transplant list. What we found out was that the tumor was within parameters on the pre TACE CT scan and that's the measurement they go by. The TACE treatments are to exterminate the tumor. It's not a cure, but a bridging therapy to buy time until a transplant organ is available.

Singing Hallelujah painting by Andrew Daniel
Singing Hallelujah

After looking at the latest CT and MRI she was encouraged by the progress made against the tumor (Audrey II). Because the chemo is directed at a small, targeted area, there is no cumulative toxicity.

We won't know if I'll need another TACE until after the one next Tuesday, but the Doc is optimistic we can take a break and go on a maintenance schedule of monitoring every three months.

We have the Much Ado About Sebastopol Renaissance Fair on September 14-15 and then we should be able to hit the road with Ruby and the R-POD in late September. 

Very Nice Amber Glass and Brass Adjustable Scale
Amber Glass Adjustable Scale

My liver works well, but tumors are as tenacious as junk yard dogs and will continue to try and find new sources of nourishment. The break will give us a chance to start weighing options.

Monday, August 19, 2013

Back to the Future ~ Aug 18, 2013

In my February 9, 2010 post called Wild Blue Yonder, I retold a story from one of my journals. In May, 1970 I packed up my pup Charis and headed off on an month long adventure. No promises to keep, no particular place to be. North was the general direction. Should I turn right or left was my morning mantra.

I found myself in British Columbia headed east on the Trans-Canadian Highway. At Yoho National Park I met Robert Glendenning and James Johnson. We spent a couple of weeks exploring British Columbia and Alberta together.

Camped at the base of Mt. Edith Cavell
Jasper, Alberta
A year or so ago I received a phone call from a gentleman asking if I was "the girl in the green VW bus with the black puppy he'd travelled around Canada with in 19 ought 70 something". It was Robert. Come to find he's lived in Petaluma for years.
Flash forward 43 years. I received a message that Robert and James wanted to meet for lunch at Sushi Hana in Sebastopol. Turns out we live within a 100 miles of each other. We had a great meal, caught up on our lives and swapped stories about our trip. Funny how you forget some things and remember other things differently.
James and Robert
“For my part,
I travel not to go anywhere,
but to go.
 I travel for travel’s sake.
The great affair is to move.”
Robert Louis Stevenson

Sunday, August 11, 2013

The Boys of Summer ~ August 7, 2013

Today we made our first trip to AT&T Park to see the Giants. The game wasn't until 7:15 but we took off from home around 2pm so we could amble down the back roads of Sonoma and Marin and pick up Hwy 101 near Corte Madera. There was traffic once we got on the freeway, but all in all it was pretty easy to get there and parking was right across the street.

We watch the games on TV all the time but nothing prepares you for actually being there: the view from the promenade, the sounds, the sun on your back, the food aromas wafting along the walkways. People get all keyed up in traffic and their everyday lives and worries. The minute they walk into the Willie Mays entrance at the stadium you see the weights drop away, scowls turn smiles, inward to outward, silence to chatter. Grown ups out of their boxes, children in their element.

We were way early so we checked out where our seats were located. Our friend at Jeff's 4X4 gave us two of his season tickets: awesome seats about 25 rows back and just to the right of home plate. Oh Baby!

Stadium food is not health food, it's a day off from being good kids. It was hard to decide, but we settled on garlic fries, a brisket sandwich and a coke. Brown rice and salads for the rest of the week to recover our dignity.

Time for a few laps around the Promenade to check out the vendors and the view during batting practice. We have a Kaiser iPhone app called Everybody Walk that lets us track time and mileage with a map. Two laps around the promenade was a little under a mile. We were leaning on the railing looking down to where the ferry parks and checking out boats and kayakers. All of a sudden we hear the crack of a bat and someone yells "heads up".

A fly ball arced over our heads and plopped in the water about 15 ft. from the pier. A kayaker was stroking hard to get to it, but a man on the pier cast a small, weighted dip net out beyond the ball and gathered it in. My understanding is that he's there all the time, but the fans never get tired of the competition.

Before we left home we'd been briefed about dressing for night ball, what you could bring in and where to park. Right nice to have someone blaze the proverbial trail for you. We brought water and snacks, cushions and extra shirts. Plenty warm for evening fog and a breeze.

We've heard Kruk and Kuip talk about the seagulls during broadcasts but never really understood their comments until we experienced ritual. Unfortunately the Giants lost their grip in the 8th. A number of fans left and we started seeing seagulls circling the park and perching on the roof line like ornaments. In the 9th more fans left and the number of seagulls doubled. When the game was over we walked up the stairs to the landing and looked back. We were astounded to see hundreds of gulls on the field and in the bleachers. It appears they are the first wave of the cleanup crew. Humans are a messy bunch and sea gulls are opportunists ~ a match made in heaven!
Parking $30
Got have Hats $64
Food $35
Gift of Admission ~ Priceless
Thank you Jeff and Kathy for the tickets, the tutorial, and a grand adventure. 

Tuesday, August 6, 2013

Bottom of the Third ~ July 23, 2013

Could the third time be the charm? Only time will tell. We're off to SF once again and back to our little aerie on Cole Street.

Steampunk Spiral Time Clock
Steam Punk Spiral Time Clock
It's kind of a damp and blustery day, otherwise known as summer in the Bay Area. Our hosts gave us a suggestion for a place to eat so we took off on a late afternoon reconnaissance mission to the Haight-Ashbury to find Magnolia. Unfortunately it's crowded, loud and just pub food ~ so not what we're looking for today. We did get a mile and half walk in and enjoyed people watching, window shopping and the street art. Conclusion was that it's a perfect afternoon to be curled up with a good book.
The City from the Marin Headlands 
Decided to dine in and went next door (literally) to Say Cheese to pick up goodies for an indoor picnic. We had hot apple pie for dessert ~ brought one of Rod's to share. Oh Baby!

TACE  III went well, my usual overnight in recovery was quite comfortable except for the fact my bed was a stones throw from the ice machine and one of the self closing, I can be loud if I want to, slamming doors. Oh well, my night nurse wakes me up every two hours to check vitals so it's really a non issue.
Dog is slamming the refrigerator door closed leaving half a cat sticking out.  Vintage JJ cat brooch.
Vintage JJ Cat Broach
I asked the attending physician to come talk to me before I was released on the 24th. I'd had my first MRI a few days before this TACE and felt it might be a good time ask some questions about progress. A good portion of the tumor is dead, but tumors are tenacious and will try and get other arteries to feed them so they can grow and not die. Think Audrey II from Little Shop of Horrors.

He said "the whole process is akin to that kid's game called Whack-a-Mole". I hadn't heard those words in 30 years. I just burst out laughing, talk about lightening a load a bit, I get it now. 
I do need to return to UCSF for TACE IV on August 20th: for a follow up look at Audrey II and to go after a small abnormality first seen in January. It may not be another tumor but it's prudent to proceed as if it was. 
Aside: So I'm at the Post Office this morning to mail a package (August 6th) and start chatting with the lady in front of me in line. There was a really large and strange piece of equipment visible through the walk up window. I said "I wondered what that is?" and she replied "Must be a Whack-a-Mole". I rest my serendipitous case! 

Things are good, I'm back in the pink once again after TACE III. We've been making apple sauce, canning pears, and gardening. I'm spending a lot of time in my studio. Not off on any camping trips yet, but we have an invitation to spend a few days at Emandal Farm outside of Willits near the end of the month and we have a date for the Giants tomorrow. Think we'll take the Ferry out of Larkspur for a new adventure.

Friday, August 2, 2013

Over the Back Fence II ~ Aug 2, 2013

Let me introduce you to Calvin Headlamp. He's as big as a dinner plate and when he comes to visit he gets his own vase.