De-Liver Me Tour Segue ~ The Visitor ~ January 6, 2015

The results of the endoscopic ultrasound on December 16th confirmed that the mass on the tail of my pancreas is indeed an adenocarcinoma. On December 26th I had a PET Scan to see if the tumor was stable or had metastasized. The good news is that there was no evidence of metastatic disease. 

We went to see Dr. Bolinger, my specialist at Kaiser SF yesterday, and unbeknownst to me she had already set up the surgery appointment for Wednesday, the 7th.  Holy Crap: no time to fret, worry, or think about it. So off we go to San Francisco at o'dark thirty. 

She hopes to remove the tail of the pancreas and my spleen with a combination of laparoscope and robotics (brave new world). Best case scenario I'll be there for 3 days. If it turns into regular surgery, worst case scenario is that I'll be there a week. We're focused on the short term incarceration, even if that means we have go over the Bay Bridge  and Richmond San Rafael Bridge to get home. The Golden Gate Bridge will be closed for modifications from midnight Friday to dawn on Monday. 

I have always believed in signs and the power of animals totem. While I was at my volunteer job this morning Rod happened to look out the window and see a Great Blue Heron glide down the driveway and land on our neighbor's play set (lower left corner of photo). We have never seen one up here in the 27 years we've called this place home. Rod came in and decided to do some research. This is the message that Blue Heron brings, from Animals Speak by T.Andrews

"According to North American Native tradition, the Blue Heron brings messages of self-determination and self-reliance. They have the innate wisdom of being able to maneuver through life and co-create their own circumstances. 

Blue Herons reflect a need for those with this totem to follow their own unique wisdom and path of self-determination. These individuals know what is best for themselves and need to follow their hearts rather than the promptings of others. And, when they follow the promptings of the heart, they are one of the most magnificent when they choose to soar." 

Our Great Blue is here for a reason, it's symbolic attributes weave the tale:

Calm, Grace, Patience, Longevity, Versatility, Tranquility, Intelligence, Determination, Independence and Resourcefulness. 

Once home and secure I update you the rest of the story. 

Top of the Sixth ~ Life Takes a 180 or Maybe Not ~ Sept 9, 2014

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

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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

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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.

Bull Rider
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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

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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. 

On Turning Sixty Nine ~ March 17, 2014

Here's a little something to put things is perspective and garner some respect for shear perseverance: 69 years = 25,185 days = 604,440 hours.

I think most of us in our sixties are amazed we survived our youth. I mean really: our parents smoked, the paint on our cribs was lead based, and cars didn't have seat belts. We fell out of trees, never rode bikes with a helmet, and drank water from the hose. My girlfriends and I were always outside playing in the woods of Mt. Tamalpais or building things from scrap lumber, old wagons, and roller skates. 

Every decade brought new challenges in the stupid human category. There is something to be said for trial and error: what were we thinking, it seemed like a good idea at the time, I meant to do that, oops and of course, oh well. Now in our prime, there is less tendency towards being stupid but we still continue to learn on the fly, fall down, get up, and dust ourselves off. 

Three seventeen twenty fourteen ~ make it up as you go day.

First stop after breakfast is the Salvation Army complex north of Healdsburg. We love digging through the old book bins and today we hit the Jackpot with 18 paperbacks and a blank journal for $12. From there we headed up to Geyserville to document Coyote, an incredible metal sculpture from Bryan Tedrick. You can climb up his leg and sit in his belly, his ears are like windmill blades and his head turns with the wind. 

We were also on a mission to find wild mustard and poppies, but decided to eat first. Our neighbor suggested we try Diavola in downtown (all three blocks) Geyserville: excellent pizza and Rod was delighted to find one of his favorite beers called Death and Taxes. When we crossed over the river and turned south on Highway 128 towards Healdsburg we hit the mother lode of Spring color.

Decided it might be a good idea to walk off some of the Pizza so next stop was Riverfront Park just west of Windsor. Hardly a soul there, so we had the place pretty much to ourselves, sunny and 69 degrees. We watch the herons for awhile, starting to gather at their favorite nesting trees.

River Front Pond

2.3 miles and a Selfie

Time to head home and fix dinner. Walked up on the porch and the front door is blocked by bouquets ~ this birthday just keeps getting better.

Pleasantly exhausted we curl up in our easy chairs to read (TV broke yesterday and won't be fixed for two weeks ~ no doubt a message from the gods). Wait, a light bulb goes on, we have desert. Our neighbor Susi brought down this incredible, decadent cake the night before. We showed amazing restraint to not get into until today. A little bit goes a long way.

Top of the Second ~ June 23-25, 2013

Early Sunday afternoon and off to San Francisco for TACE II and a return visit to the flat we rented in May. It turned out to be a rainy day so instead of a 2 mile walk, we spent the afternoon curled up reading with a couple of breaks for sustenance. Two doors up we discovered Say Cheese and picked up some scrumptious goodies for an indoor picnic.

Around dusk we toddled a little further up Cole Street to Zazie's for dinner. It's amazing to have so many choices within walking distance. I'm beginning to understand why some folks like living in the City.

Monday was going to start early so we hit the hay about 9:30. I don't know if I mentioned it but the flat is over a restaurant. We had expectations for a certain amount of noise at closing time but we definitely weren't expecting construction, breaking glass and furniture being moved between 10pm and 2am. So much for a good night's rest!

A little aha moment at UCSF heading up in the elevator Monday morning. A gentleman with a dolly holding 3 boxes got on the elevator and someone at the rear asked what was in the boxes. He told us two kidneys and a liver. Three people were going to get a new lease on life today.

Window Lit Flowers

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Second TACE went much better, no nausea or pain this time. At my doc's suggestion I brought my own jammies and was able to dodge a second episode of the RASH. Shoulder pain and semi-sleepless nights seem the worst of it.

The irony of hospitals is that they are supposed to be quiet. There are signs on all the doors that say "Shhh" but each one has an automatic closer that slams it shut. Go figure!

Shhh

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The recovery room is like a 16 bed dorm with curtains separating patients. There are alarms, announcements, medical staff and cleaning crews working day and night. Nurses dutifully wake you up every three hours to check on one thing or another. There are dramas and laughter, conversations in animated tones and different languages. It's like you've been dropped into parallel universe for 24 hours: educational, thought provoking and at times entertaining. Sleep is not really an option, but reading and cat napping will get you through the proverbial night.

Quimby Cat Napping

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The drive home Tuesday was delightful, the world washed from two days of rain. We got back to the cross street just below our driveway and found a fire truck parked across the road. We were told we couldn't go through because there was a tree down on Lynch Road. We told him we could see our driveway and there was no tree down between here and there. No matter, he had his orders. This doesn't make my day. We head for the grocery store to pick up some supplies and head back. There is another truck blocking the road this time. I told Rod to pull the "my wife just got out of the hospital card" and sure enough the young man let us through. Home at last.

I'll need to return to UCSF for a third TACE on July 23rd. Certainly hope that's the last one. Seems like life has been on hold since January.

On Being an Advocate ~ June 21, 2013

One thing this little excursion into the health care system has taught me is that it's critical to be your own advocate. Kaiser and UCSF are world class institutions but that doesn't mean that things can't get lost in translation, transition, or Timbuktu. I have an awesome medical team, but regardless of the expertise represented, you need to find your voice and speak up. Telling me no or I don't know is not an option.

We Can Do It

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It's akin to herding cats or cattle, to make sure everyone is on the same page, headed in the same direction. As Will Rogers once said "If you're ridin' ahead of the herd, take a look back every now and then to make sure it's still there".

Long Shot

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So whether you're looking after yourself, a friend, or family take the bull by the horns, do some research and educate yourself. If you're not satisfied with an answer take it up the chain of command. 

What I find most amusing is that the watchwords and catch phrases of my youth have come full circle and make as much sense now as they did then: assume nothing, ask questions, take notes, question authority, be a squeaky wheel and persevere. Who knew?

A Journey of Another Kind

The day before we left on our Oregon adventure in July, I had my annual mammogram done. When we got back there was a message that my radiologist wanted an additional one. I went in Aug 8th and waited while she went over the new films. 

She discovered some minuscule calcifications in my left breast and suggested that I have a Stereotactic Biopsy. They had an opening that afternoon so I decided to just do it before I had time to over think it. The procedure is a minimally invasive one that uses computerized three dimensional imaging to pinpoint suspicious areas and allow samples to be taken with a needle. Much to my surprise and relief it was not uncomfortable. By Thursday I had results and an appointment with my Breast Care Coordinator to discuss results and talk about options for treatment.

"Don't Panic" from Hitchhikers Guide to the Galaxy

What I have is called Invasive Ductal Carcinoma - most in situ (in the duct) and some outside the duct, hence the "invasive" moniker. The area is quite small and thought to be Stage I at this point. Early detection may well play a role in my future. If it's been awhile since your last mammogram I have three words for you "JUST DO IT".

Ladies with Attitude

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My girlfriends are women with attitude and several are breast cancer survivors. All have embraced me with love, knowledge, humor, and offers of the occasional kick in the butt as needed. The most important message thus far is "be your own advocate and don't hesitate to ask questions or get a second opinion".

Leaning on a Friend

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Needless to say, I'm calling all my spirit guides back from their reveries, retirement and galactic roadtrips.

The Appearance ~ Guardian Angel

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Time to cowgirl up! It is what it is and I intend to face it with my usual optimism and the love and strength of my knight/chef and friends. Writing is good medicine for me so I have decided to blog about the journey.

Perseverance

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Thought for the Day: Quit sitting around waiting for life to happen and start chasing your dreams. Just breathe deep and jump!