De-Liver Me ~ March 20, 2014

It's occurred to me I'm seriously overdue with an update on the Liver Times. To set the stage, there is a scene in the movie "Dave" with a docent leading a tour through the White House. She's walking backwards, motioning with her hands like she's directing a plane on the tarmac, and repeating the phrase "we're walking, we're walking". The segue mantra here is "we're waiting, we're waiting" but I know a lot more now than I did six months ago.

Bridging Therapy ~ The four TACE (transarterial chemoembolization) treatments done last summer have accomplished their goal. December and February CT scans show that my tumors, Audrey II and Carmine, are stable and not growing. 

Something new on the Horizon ~ The long term effects of Hepatitis C and hemachromatosis are the likely cause of the hepatocellular carcinomas. I have an appointment in late May with the Viral Hepatitis Clinic at UCSF to get information on a 1-2 month regimen of the new drug combo of Ribivarin and Sofosbuvir. It's been effective in making the Hep-C viral load undetectable in the blood. The longer it is suppressed the less likely it is to return after transplant. Treatments will start this summer.

The Waiting Game ~ The transplant list is a numbers game, played by the book, and driven by something called a MELD score: an acronym for Model for End-stage Liver Disease (most transplant patients would really like to see a name change). A combination of three blood tests are done quarterly and then points are added to your existing MELD score. 

Patiently Waiting

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My actual MELD is a 6, but with the diagnosis of cancer it was automatically kick started to a 22 in April 2013. Quoth my transplant nurse: "Your liver is functioning fine, you just have a couple of F#%*?$G tumors." My current score is a 29. I'll earn 2 more points in May, 2 in August and 1 in October which will bring me to 34. You normally reach the top of the transplant list when your numbers reach the mid 30's, but the number may vary, up or down, depending on availability of organs. 

The Irony of It All ~ Iron overload girl is now anemic with a ferritin level of 14. No one has been able to figure out why. My gastroenterologist had suggested taking ferrous gluconate, but the ingredients read like car wax and cleaning products so I declined that dance partner. My UCSF doc suggested only a low dose supplement so I'm taking all natural Floradix. The drug regimen mentioned above to deal with the Hep C will also lower ferritin levels so it's important for me to stay on top of this.

Warrior Angel and Eagle Mount

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Challenges ~ We all face challenges of one kind or another. The key is to embrace them with grace, humor and a warrior attitude. Choose to be fearless, be your own advocate, and question authority. Don't waste any hour of a day and keep your creative side engaged at all times. 

"Challenges make you discover 

things about yourself 

that you never really knew". 

Cecily Tyson

Just a Thought Series ~ June 19, 1975

What is true

Is that when you get down to why

You are doing something

~

Not for the money or ego satisfaction

Not for the expectations 

Or the promises

~

But for the sheer love of what you are doing

There exist no droughts

No dried up wells

~

Awareness of the everyday

Is an endless sourcebook

Rattlesnake Grass, Kortum Trail

Sonoma County Coast

Breast Cancer Journey - Off Season Training

I usually avoid traveling to the east side of Hwy 101 into Santa Rosa or Rohnert Park like the plague. I save up errands and appointments so I only have to go in every week or two. This week was an anomaly for sure, but all for a good cause ~ my future health!

I met with my Oncologist on Monday ~ reports are good, the tumor removed was about half the size they anticipated. I have positive estrogen receptors so it has been suggested that I start a regimen of Anastrozole to help lower estrogen levels ~ as if menopause wasn't enough! One of the possible side effect is hot flashes ~ Geeze Louise, I made it all the way through menopause with one night sweat and no hot flashes, so I'm hoping that whatever my body knew then it remembers now! Due to a long list of other potential side effects I've asked if I can start when I'm done with radiation. I should hear back in a couple of days. I don't want to hammer my body with too much all at once. Tuesday was a follow up mammogram to see if there were any residual calcifications. Report back from radiologist was that films were clean and clear. Oh Yeah!

Wednesday off to the Rohnert Park Cancer Center (RPCC) to meet with my Radiation Therapist and discuss preliminary treatment plan: five days a week for four weeks. We've got it worked out so I'll be done about a week before we take off on our 25th wedding anniversary adventure (destination pending ~ we keep getting new ideas).  

I got Thursday off and didn't leave the property except to attend a concert at Studio E with singers/songwriters Tom Russell and Thad Beckman. It was an amazing evening full of laughter and outstanding music dedicated to my late friend Trisha and shared with family and friends.

Friday took me back to RPCC for a CT scan, to document my treatment plan, design positioning devices to keep me in same position for each session and tattoo my skin for positioning accuracy (we're talking four blue freckles here, nothing major). I met with nursing staff for patient education and got more homework. On Nov 9th they'll do a Sim Verification or dry run and perhaps my first treatment.

Trisha's Bobcat ~ Cherry Camp Vineyard 2009

For anyone who knows me, Bobcats hold a special place in my life. As I walked into my Radiation Therapist's office and sat down I looked up at the calendar on the wall ~ there looking back at me was a Bobcat and the words of William Wordsworth "Let nature be your teacher". I no longer question these experiences, I just know my husband, friends and spirit guides have my back and are with me for the duration of this journey.

Just Listen

Tuesday is errand day. The list is sometimes long since I try to make a run only once a week. There's great satisfaction in crossing items off the list as I make the trek. With gas over $4 a gallon one approaches these kinds of simple chores with a new perspective ~ full circle, no backtracking allowed.

I had to make a stop in Santa Rosa and while I was waiting for my appointment I decided to grab a bite at Panda Express. I brought the fortune cookie home to share with my husband and cracked it open while he was fixing dinner. I read the fortune, burst out laughing and handed it to him. In light of all the aha moments we've experienced and shared with a group friends over the last couple of months neither of us was at all surprised.

"Counting time is not so important as making time count"

  

There seems to be an unseen force afoot here, guiding us all along a new path of awareness about priorities and what's truly important in our lives. I think most of us would agree that the force at work here is a gift from a friend who watches over all of us and isn't shy about providing the occasional cosmic kick in the butt to keep us on this path to enlightenment ~ the important thing is that we just listen.

"Listen"

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Every day is a gift, choose your attitude and remember how fortunate you are. Make time for yourself, make time for your family, make time to give back to your community. Everyone wins!