You Gotta Believe ~ November 2, 2014

You can't explain it but sometimes you just know things. When I started the De-Liver Me Tour blog I chose "innings"  to mark the sequence of events. There was no particular rhyme or reason, it just felt right. 

Photo credit Christopher Chung

Santa Rosa Press Democrat

As Giants fans we began to see a light at the end of the tunnel when the playoffs started. Perhaps an improbable dream, but I knew they'd make it to the World Series. It was also going to come down to the bottom of the ninth, game seven. They'd be there for me. If they won then I would win, the Transplant City Tour would be a success. It's as simple as that. 

Dreamer of Improbable Dreams

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It was kind of like the Professional Bull Riding finals in Las Vegas in October 2013. Our guy, J. B. Mauney, was a long shot to win but we decided we had be there just in case. The championship race was so tight it came down to the last ride on the last day. He won the title. Sound familiar?

No matter what is going on in your life, make room for your dreams, crowbar them into your consciousness if necessary. Look forward and set some goals, even little ones. Become a warrior and an advocate.   

Key Hole

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We have the power, we just need to remember we also hold the key to finding it. So with that said, it's time for us to get up off our collective butts and take a walk, or dance in the kitchen, maybe pick a bouquet or fix a meal for someone. Call a friend. "Life is short and if you miss something, quite frankly Scarlet, it's your own fault". My darling Grandmother said that!

Oh Baby We've Been Floored ~ October 13, 2014

The new flooring and kitchen remodel took us about two weeks. Mayhem and laughter were the watchwords of the adventure. We discovered things we hadn't seen in years, created a vision of how we'd like to resettle and in the process got a whole bunch of exercise moving boxes and furniture out of and back into the house. 

Our home of 26 years went from Holy Crap to Stunning. We moved the last of our stuff in today, consigned the potential rotating art and furniture collection to my shed and filled up the Honda with one more round of donations. It's hard to remember how it was.

And so it begins

The Hall of Shame and Bad Carpets

Old Kitchen

New Kitchen Floor

New Chef's Central for Rod

Old carpet and collections circa 2010

 

New living room incarnation

One of the bedrooms

The other bedroom

There was method to our re-floor madness.. Those ancient carpets were a playground for who knows what. Once I have my liver transplant I will be on immunosuppressants for life and my warrior's immune system will be compromised. The house will be a lot easier to clean and thus keep me healthy. Of course, the other plus is that we created a thing of beauty to enjoy for years.

Someone once told me life is short: eat dessert first, dance in the kitchen, be spontaneous, don't look back and damn the torpedoes full speed ahead. We live that mantra. If you're thinking about taking a leap of faith, just do it. 

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. 

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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.

Devine Jubilee

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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.





More Homework ~ July 15, 2013

The morning of the 11th dawned with one message "make it up as you go". A few errands out of the way and off we went. First stop was Salvation Army thrift store complex on Lytton Springs just north of Healdsburg. It's one of our favorite haunts.

We found a couple of giant woks that will translate well into great container gardens for our growing family of succulents. We also discovered 20 bins of books next to the checkout kiosk. At bin 18 I uncovered a paperback called "Crazy, Sexy, Cancer Tips" by Kris Carr with a forward from Cheryl Crow. I read the first pages standing in the morning sun and started laughing out loud. This book definitely needed to be in my library.

Kris was diagnosed with a rare vascular cancer called epithelioid hemangio-endothelioma (EHE for short). Though our diagnoses were very different we both had the same reaction on being told we had cancer: Holy Shit! 

She documented her journey with humor and a no nonsense approach of taking charge that rang true with me. She reinforced a lot of what I was already doing: writing, creating art, taking notes and questioning authority. The book is a great road map for all glorious Cancer Babes. It opened my eyes to what more I could be doing. After all we are warriors and it's time to start training.

• Shake my ass
• Create a cancer posse ~ more on this later
• Rethink my diet ~ can you spell China Study?
• Drink more water
• Stretch more ~ Yoga
• List of 10 things you've always wanted to do ~ no jumping out of a plane isn't one of them

The body heals eight times faster with exercise: it floods the body with oxygen, helps rid it of toxins, and releases endorphins to make you feel good. What's not to like? Walking 6-8 miles a week is a start. Now it's time to start shaking my ass with abandon to one song a day on the radio. As serendipity would have this morning's random choice on XM radio was John Mellencamp's Paper in Fire. We open the doors and cranked it up.

http://youtu.be/myo9wXrNUP4

Off the Proverbial Grid ~ June 07, 2013

The actual chemoembolization or TACE procedure was the easy part. The aftermath can kind of take the wind out of your sails for a few weeks.

Pain is the most common side effect of the procedure because the blood supply to the tumor is cut off. Also, to control the potential for bleeding, I had to lay flat on my back for at least 4 hours. Due to the fact it hurt too much to move, I was basically in that position for 24 hours. Old spines speak, then scream volumes, when parked in stationary situations for inordinate amounts of time. Spines are made for movement.

Lake Dancer

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Nausea and a slight fever are to be expected. Only with you for a few days, but totally annoying. Fortunately all are readily controlled with antibiotics, anti-nausea and pain medication. And yes, Mabel, they too come with their own side effects. Oh Boy!

Why are there never any good side effects?

Just once I'd like to see a drug commercial that says

May cause extreme awesomeness.

Anonymous

The potential side effects of the procedure, listed on the UCSF and other websites, are totally generic with no hint of the possibilities. I guess they don't want to scare you. However, anyone going through chemotherapy or TACE treatments is already facing a life threatening situation. We are already warriors in our own right so I don't think a few more details are going to scare any of us. 

 

 Valkyrie

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What else can we expect besides the usual suspects? What about the vice clamped on my right shoulder the first week and the hive like rash on my back? Are there naturopathic or other remedies for some of these? It's the little things that can make a difference.

Sleep is one of the keys to healing. I've mastered the art of the cat nap and drop in my tracks whenever I feel the need.



While She Slept

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One of the most important aspects of healing is the power of positive thought. Rod is my rock and I cannot say enough about our posse of friends and neighbors. They have sent energy, humor, flowers, food and thoughts. We've partnered up with one of our neighbors to share the work and the bounty of our large vegetable garden, a win-win for both families.  

I'm back to sleeping through the night and getting stronger everyday. It's taken a couple of weeks to approach normal. I've learned to be patient with myself. The rash on my back is healing, but still looks a little like I got hit with buckshot. My doc thinks it may have been a reaction to the detergent used to wash hospital linens. On her advice I'm bringing a T-shirt and my own sheet for the next session on June 24th. We went to the movies yesterday and for a mile walk today. After two weeks of inactivity, I had to start from scratch, that's been the really hard part.

Amusing aside ~ I seem to have the attention span of a six year old. I'm hoping it's temporary.

Bright note ~ I'm at my high school cheerleading weight of 125 ~ Do you serve belts with those pants?

Once again thanks to Etsy Artisans who create the pictures that speak my words.  

Breast Cancer Journey ~ Bottom of the Ninth ~ Grand Slam

D Day Part Deux, Thursday October 6th

We awoke to thunder, lightening, rain, then sun and the news that one of our gang of "Usual Suspects" is moving home from out East. It was gonna be a good day, even with surgery scheduled around 3pm.

After reading the initial pathology report my surgeon suggested that we create a larger margin of clear tissue where the tumor was removed from my left breast. Just a little added insurance. There were no "wasp on steroids stings" (radio tracer injection) or wire guidelines this time. She had been down this trail just last week so it was a pretty simple procedure.

It's kept cool in the admittance room where you wait to get wheeled into surgery. They have you put on a huge, double layered soft paper gown/tent that ties in back and has a series of strange little vent holes in it. Much to my delight I learned there is a heat pump and hose that hooks into one of the vents and blows hot air into the gown to keep you toasty. I need one of these for watching TV in this winter! I was home by late afternoon with an appetite (18 hours with no food) and very little discomfort.

Friday I was supposed to relax and take it easy. Needless to say, sitting still is not one of my strong suits unless I'm totally enthralled in a book or at a music venue. Rod has gotten really creative, short of tying me down, with keeping me put. After breakfast he emptied our overstuffed piggy bank on the counter and said "sit, sort and count ~ right arm only". That kept me out of trouble for a little while.

He's pretty sweet for a tough guy. He's been fixing me fabulous meals and doing the dishes. How often is that going to happen? This morning he made us designer pancakes. I got a pony and a redwood tree and he made himself a dinosaur.

Just in, hot off the wire:

We've hit a grand slam out of the park ~ I just talked to my Breast Care Coordinator about an hour ago and the news is that my margins are clean. Game 1 is in the win column, but it's important to not lose sight of the fact this is an ongoing series, kind of like the playoffs. Once I talk to my oncologist on October 24th I'll find out more about my post-season training schedule of radiation therapy. 

That said: just a reminder to never lose your sense of humor, always question authority, dance in the kitchen and walk in the rain. Let your mind out for a run around the block.

Rain Couple

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Today

Today is not for

I should be

I'm supposed to

I need to

Today is for

Saying thank you to those who serve

Hometown Heros

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Opening a door for someone

Smiling at a stranger

Taking a walk outside

Calling a friend

Planting a tree

Dancing in your living room or

Making a child giggle

Remembering

Those no longer with us

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Never Forgetting

How precious life is and

How lucky we are

Life is too short to sit around and let happen: follow your heart, chase your dreams, and do what makes you happy. Rain or shine step outside for a few hours. It's amazing what awaits you on the other side of the door!

29 Years Ago Today

So have you ever thought about the serendipitous chain of events that led you to your partner in life? My husband Rod and I met 29 years ago today at a music festival in Cazadero, CA but the path started long before that.

Rod and Hazel May 1981

In 1967, my senior year at UCSB, I shared a cabin with a friend named Deanne. Through a friend of hers I met John Madison, an occasional travelling partner and gentle soul wise beyond his years. He taught me alot about myself in the time we shared.

We were on a road trip in the mid 70's and spent a couple of days with a friend of his in Crested Butte, CO. Sharon had grown up in Berkeley and when she found out I was from Sonoma County she told me I had to check out the Fort Ross Volunteer Fire Department Picnic in Cazadero. I filed the information in the back of my brain and didn't give it a second thought until 5 years later when my neighbors in Sebastopol mentioned the gathering was the following week. On a whim I decided to go.

The music and weather were amazing. I didn't know anyone there so I just decided to get up and dance by myself. The next thing you know there is this handsome, ponytailed hippie boy dancing next to me. Three hours later we were still dancing, and 29 years later we continue to dance.

The funny thing is we always remembered the date as being May 26th and celebrated that date for 25 years until I found my ticket to the event a few years ago. So now we celebrate the 23rd and the 26th!

Life is short, don't hesitate when adventures call.