De-Liver Me Tour ~ November 26, 2014

Thanksgiving is upon us and I have so much to be thankful for. The universe continues to amaze and reveal itself in curious ways.

When Starships Collide

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Update: I've been on the drug combo of Ribivarin and Sovaldi for Hepatitis C since October 17th. As reported before, there have been no side effects. What I wasn't prepared for was the swiftness of quantifiable results. I had baseline tests done on October 15th and my viral load was 135,825. At the end of the first week it was at 88 and has continued to drop. My liver inflammation indicators: AST, ALT and ALP are within the normal range for the first time in 20 plus years. Say What? I had my quarterly CT scan and MELD blood tests this week. What's next depends on the CT scan being clear and Hep C being undetectable in my blood. I should hear back from my doc next week.

One more thing off the list and a full circle tour: Headed to San Francisco on November 17th to get reacquainted with a couple we met through our friend Maureen Lomasney. Alice and John have generously offered Rod their spare bedroom while I'm captive a UCSF. After a short visit we headed to Mill Valley and on a whim stopped at Grilly's Mexican Food down near Tam High School for lunch. Great choice, excellent meal. Up and over Mt. Tam to Stinson Beach for a 2 mile walk and to check on the yard and house plants at my cousin's cabin. The day was absolutely gorgeous, we got home before dark and totally refreshed. 

Omne Trium Perfectum: In the last 5 days we've had friends visit from here and beyond, quite literally. One of my oldest pals, Tom Gross and his friend Suzanne, came by for a couple of hours on Saturday on their way back to New Hampshire. He's moving back home to Sebastopol in January after having been gone 7 years. Sunday and Monday, my college roommate, Maggie Rose and her husband came all the way from Cedro Woolley, WA for a two day visit. We hadn't seem them in 5 or 6 years. Last night my late friend Trisha showed up in my dreams with a hug and a smile. The clans and my spirit guides are gathering to walk with me on the journey, you may know them as you know me:

Crow: Questioner of Authority

Crow

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Wolf: Stamina and Strength

Wolf

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Swan: Beneath my serenity lies a fighting spirit

Swan

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Be thankful for family, friends and all the little things. Life is short so get off your butt and on with the journey.  Thanks once again to Etsy artisans who never fail at illustrating my thoughts and musings. 

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?

Breast Cancer Journey ~ 1st and Goal

My 20 day radiation schedule has gone quickly, only 2 marbles left in the out box! Monday was the last day of traditional radiation which targeted the whole breast. The last four days target the area of the original tumor and incision, it's called a "boost" and is site specific.

My "A" team of fellow travellers at the cancer center have all been a part of the journey and we sometimes have a chance to visit while awaiting sessions. On Friday we got off on a tangent talking about the ailments du jour. Suddenly everyone got really quiet and then we burst out laughing, aghast at the idea we were becoming our mothers. One said her grandmother used to call it "organ recitals" and they were banned from family gatherings and dinner conversation. A conciousness raising moment for sure.

 

Spirit Horse

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As for the decorative sunburn and random rash I was blessed (too bad there's not a font for sarcasm) with just the rash. It looks like someone placed a pancake over my breast as protective gear and then dusted the surrounding treatment area with buckshot. I don't have kids but I'll bet it's akin to diaper rash and it itches like poison oak. I quickly found a solution to that little inconvenience: Mama Meryl's Healing Salve. It's made here in Sonoma County and available at Sebastopol Hardware. We've been using it for years for everything from cuts to scratches and burns to stings. One of the main ingredients is calendula which is in a number of recommended potions in the "dealing with it primer" for radiation patients so you may be able to find something akin to it closer to home.

Not feeling the predicted fatigue or I've just been too busy with life to notice it. The serendipitous timing of our four craft fairs following each week of the radiation sessions is perhaps no coincidence, but a handy coping tool nonetheless. I will say that during the last week or so, when 4pm roles around the barcalounger, a tall glass of water and a couple of chapters of an NCIS marathon are a pleasant diversion.

Once I graduate on Friday I'm going to take December off and give my body a rest. The next step in this journey will be five years on an estrogen inhibitor called Anastrozole which of course has a host of potentially nasty side effects.

I've always be one to question authority so I'm doing some homework. First I'm looking into an alternative to ingesting medication orally by talking with a compounding pharmacist who can use my prescription to make a topical cream. We also have local MD who believes in incorporating alternative therapies into her practice and some of those may mitigate potential side effects of the medication. Her specialties cover my gambit of concerns: women's health, oncology and hepatology. Both are willing to work with my oncologist at Kaiser so once I have more information I'll contact him to discuss possibilities.

Apologies for the football analogy in my title today, but our beloved SF 49ers have come back to life after what seems like decades. It just goes to show you should never give up hope ~ ever!