The Art of Giving Care ~ October 11, 2015

My husband Rod is my caregiver, chef, minister of laughter, partner in crime, world class snuggle and best friend. In spite of all that is going on in my life, he makes time to give back to the community at the Council on Aging's Meals on Wheels Program. I'm so proud he's been named October 2015's Volunteer of the Month.

I'll have an update on me after we meet with my oncologist on October 15th. Let's see if I can continue to baffle the medical community!

De-Liver Me Tour ~ Face the Music and Dance ~ August 31, 2015

Remember Plan B?

My last update, on June 15th, discussed the aforementioned Plan B for treating the two new liver tumors (Sebastian and Brunhilda). It's called Stereotactic Body Radiation Therapy (or SBRT). I've come to understand there is no simple description for anything in the medical field, hence their fondness for acronyms. 

The SBRT was to be done at Kaiser SSF. It starts with imaging to precisely map the exact position of the tumors and create a customized treatment plan. A device called a CyberKnife (conjures up all kinds of images) directs radiation beams to the tumors. 

The first order of business is at PET/CT scan. You are injected with a radioactive sucrose solution and then have to still for 30 minutes, then lie still for another 30 minutes during scan. The solution seeks out hot spots of metabolism which are indicators of inflammation and cancer activity. 

Say What?

The results from the scan were not what we were looking for but not surprising since we already knew that pancreatic cancer can be aggressive. When the doctor at Kaiser SSF called me he said  "Sorry to have to deliver the news, the pancreatic cancer has metastasized, good luck with chemotherapy". 

Straight to the Heart

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Talk about straight to the heart of the matter. I never did like things sugar coated. I don't know if the radiation for the liver tumors is still an option, but I will ask. At the moment, in spite of everything, my liver continues to function pretty well, so it might be best to leave things be for now.

The Learning Curve that Never Ends

Life is about choices and finding your own way. I do not want to do chemotherapy for any reason. I've watched too many friends suffer through the treatments for no apparent gain, other than feeling like crap the last months of their lives. For me it's about quality of life, not quantity. We've made an appointment with my oncologist to talk about other options that might be available. We also have an appointment with a doctor who is an internist with training in Geriatrics and Palliative Medicine. She'll help us navigate the road ahead: what to expect, concerns and issues. 

Metamorphosis

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There are promising studies on Cannabis extracts (oils and tinctures) that have been shown to prevent formation of blood vessels to tumors, stop metastasis of cancer to other areas of the body and inhibit the proliferation of cancer cells. With my oncologist's blessing I'm working with a local doctor.

I am a warrior and my job is to continue baffling my doctors and defying the odds. I'm still determined to outlive the expiration date on my American Express card in Fall 2017. 

Wolves

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Whatever is to come brings no fear. I have Rod, friends, family and spirit guides watching over me at all times. We never know what is ahead of us so it's time to face the music and dance.

Lighthouse Waltz

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Thank you, as always, to my fellow Etsy Artisans who are always able to help me illustrate my thoughts.

De-Liver Me Tour ~ Fashionista Update ~ June 15, 2015

O'Dark Thirty: We left home at 5:45 am to get to UCSF by 7:30. Time to take care of some unfinished business. There is a small residual hepatocellular carcinoma near one of my existing tumors, Audrey or Carmine that needs to be decommissioned with another TACE. 

Live Entertainment: After registering, you change into a fetching ensemble of mismatched pants, gown, robe and slipper socks and then get to park your butt in the waiting room until called. It's a chuckle for all patients, no matter how nervous they might be about what's ahead. This of course is my 7th rodeo so I'm leading the pack vamping it up for photos.

 

The Nerve Center: Next stop is the six bed nerve center where nurses are prepping patients for procedures or taking care of patients just returning from said procedures: resting up until they're released or moved to rooms. It's a fine tuned operation of controlled chaos with a team of nurses who keep the impossible moving smoothly. They all love what they do and it shows.

Chaos

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Stumping the Professionals: Sometimes things don't go as planned. I spent 3 hours in the procedure room with the resident intern, my doctor and then the head of the Interventional Radiology Department. They were a determined trio, but the location of the small tumor prevented them from reaching their destination to do the TACE. Time was called and I returned to the "nerve center" where I started out this morning. Standard protocol is that you have to spend 6 hours flat on your back to make sure the incision in in your groin doesn't bleed. Once given some pain medication for my shoulder (often a side effect of liver exploration) I could relax and take it all in. It was at times noisy, entertaining, poignant and uplifting. They finally let me up to dress around 5 pm so I could be released.

Rod's Story: For Rod the whole day was a waiting game. He did get a three mile walk in, treated himself to a good lunch, took a nap, did some reading and listened the Giants game. Trooper Boy. 

Lost in Translation: When he returned at 5:15 to pick me up he told the front desk that he knew where I was (he'd met with my doctor and seen me when I came back from the procedure). However, the reception desk's records said I'd been moved up to the new overnight accommodations on the sixth floor. They weren't about to let him wander down the hall until they'd confirmed my whereabouts. He said the supervisor was getting really frustrated because no one was answering upstairs and some of numbers on their call sheet were incorrect. Amused at the confusion he just kept quiet and watched it play out until one of the recovery room nurses came down the hall to fetch him. A small comedy of errors that I reckon has been set straight by now. 

Never leave the City during the Commute: We get on the road about 5:45 never the time to be heading north out of San Francisco. It was a freaking zoo, I cannot believe humans do this everyday. After almost getting caught up in a potential accident we got smart and stopped at the Wild Fox Restaurant near Novato for a bite to eat and watch the beginning of the NBA playoffs. By the time we hit the road again, there was no traffic and we were home in time for the second half of the game to watch the Warriors spank the Cavaliers. 

Plan B: Acronym of the Day: My docs decided that Plan B would be Stereotactic Body Radiation Therapy or SBRT. There are two facilities that provide the service, Kaiser South San Francisco and UCSF. My docs at UCSF want me to continue to be treated there and are already working with my local Kaiser to get the approvals. We have plans for August in Canada and I want to get this party started.

I'm just learning about the treatment but it means that a specially designed coordinate-system is used for the detecting the exact location of the tumor in the liver and it's then treated with a limited but highly precise single dose of radiation. Non invasive, few side effects. More on this as I get better informed. 

Post Script: We got home to find a small bag hanging on the front door. In it was ceramic spirit bear made by my neighbor Khysie. There are no words for the circle of friends who surround and support us. He resides in a special place to watch over us.

De-Liver Me Tour ~ A Little Magic ~ June 15, 2015

We just returned from a couple of weeks of free range exploration in Northern California and Oregon, a well deserved time out before we head to UCSF tomorrow for my 7th TACE treatment. Journals and photos to come in the next couple of weeks. For now I'm taking you on a little side trip.

On the way home, June 9th, we headed south from Bandon to McKinleyville to spend the night with friends Tom and Linda. One of the prettiest sections of the journey on Highway 101 is from Crescent City to Eureka through the redwoods. As we started down the ridge towards Eureka we spotted a juvenile Black Bear at the treeline. In the many decades we've traveled this road this was our first sighting. This had to be some sort of sign. When we got home I looked up Bear Medicine. Clear as a bell. 

California Black Bear

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When you invoke the power of the bear totem, reflect on the qualities of inner strength, fearlessness, and confidence in yourself and how you can project them in your world. Since the bear is often associated with shamans in many traditions, this spirit animal can symbolize healing abilities and stepping into the role of the healer. Standing against adversity; taking action and leadership.The essence of Bear teaches us how to dream what is desired into physical reality. 

Post Script: The doctor doing my procedure tomorrow called this morning to introduce himself and remind me when to be there, to fast after midnight, and that I would, as before, be there overnight. I told him I had a very important question and he "sure anything". What I wanted to know was if the televisions in the recovery section (at each bedside with headphones) got the local station that will be televising the NBA finals (I am not normally a basketball fan, but we all have the fever this time around). He said "I think so, but as a back up plan bring your iPad. They have WiFi and you can probably stream the game". How's that for patient support and customer service? Off to San Francisco at o'dark thirty. 

De-Liver Me Tour ~ The Fog is Lifting ~ May 17, 2015

The State of Kerfuffle has started to sort itself out. I will be able to have my next TACE done at Interventional Radiology at UCSF. It appears one of my hepatocellular carcinomas, Audrey or Carmine, has attempted a breakout and we need to shut down the escape route. This will be TACE number seven, which also happens to be my favorite number. I've never really looked up its attributes but decided to do a little research.

Morning Fog

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In numerology the #7 is the seeker and not just a lucky number: spiritual, intelligent, focused, intuitive, persevering, contemplative and gracious. In other disciplines #7 represents a natural healer, psychic abilities, inner peace, endurance, wisdom, ability to bear hardships, independent, quick-wit, non-conformist, and writer. I may know her. The number seven is lucky for Cancer and Pisces. Couldn't help but see the irony in this one: I'm a Pisces.

Healing Dream

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Time Out ~ Before the return trip to UCSF we're taking one of our infamous "Do We Turn Right or Left" road trips. We're taking off May 26th, the 34th (3+4=7) anniversary of our meeting at the Fort Ross Volunteer Fire Department Picnic in Cazadero, and will return around June 12th. The only promises to keep are a visit to my 96 year old Aunt in Durham May 26-27 and to be in Canby, OR by June 5-6 to visit family and celebrate our grand niece's graduation.

One stop we want to make on the way north is Oregon Caves National Monument near Cave Junction. The last time we were there in 1998 Rod couldn't explore the caves because he was using a cane. We did however spend an eventful night in the haunted suite on the 3rd floor of the Chateau. Looking forward to another experience and a hike in the caverns. 

Vintage Travel Poster 

Found on Pinterest

Otherwise we are playing it pretty much by ear. Rod wants to do some fishing so that may include the Trinity, Klammath and Smith Rivers.  We have friends to see in Hillsboro and time to toddle south down the Oregon and California coast on the way home. If it's warm enough in Gold Beach we'll do Jerry's Jet Boat trip up the Rogue River to Agnes for the day. An adventure not to be missed.

Hillsboro Heaven

Back to Reality ~ My TACE appointment at UCSF is June 16-17. Our friends Alice and John have graciously offered to let Rod stay in their guest room while I enjoy another overnight at the infamous UCSF Recovery Spa: bad food, a slamming door, alarms and a cranky ice machine. However, the doctors, nurses and staff are the best. A couple of weeks recovery and I should be ready for the Annual 4th of July Pancake Breakfast That Lasts All Day gathering at our place. More from the road once we return.

The De-Liver Me Tour ~ State of Kerfuffle ~ April 28, 2015

Heavens to Murgatroyd, my last De-Liver Me Tour update, The Game Changer, was on February 5th. My apologies for the delay, but by the time you finish this you'll totally get why. 

Reclaimed wood sign

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First off I'm totally recovered from the early January surgery to remove my spleen and the tumor on the tail of my pancreas. We're back walking 1-4 miles a day, gardening, spending time with friends and neighbors and planning road trips for summer and fall. Now, on with the chapter at hand.

Can you spell Kerfuffle? How appropriate that this descriptive word originated with my Scottish ancestors: 

• Confusion, disorder, chaos, or fuss
• A minor disturbance
• Smaller than a contretemps, larger than a snag
• Involving more people than a SNAFU or a stink
• A social imbroglio or brouhaha

01/06/15 ~ Received notice from UCSF that I had been removed from the liver transplant list, no mention that the authorization for continuing care was cancelled by Kaiser. 

02/02/15 ~ Received Letter of Authorization from Kaiser extending coverage of medical care at UCSF Liver Transplant Department through 02/27/16. Say What?

02/10/15 ~ Appointment with my doctors at UCSF, at request of Kaiser to review continuation of Hep C medication. Original order was to treat only until transplant, not through full cycle of 24 weeks. Kaiser was questioning whether treatments should continue. UCSF told Kaiser it was in my best interests to continue the regimen for full 24 weeks (through April). It won't change any outcomes with the cancer, but will take some of the burden off my compromised liver. UCSF received approval to finish Hep C regimen. 

03/10/15 ~ Quarterly MRI done at Kaiser, verbally requested by my doctors at UCSF and Kaiser. We're talking stem to stern, top to bottom, the organ parade. 

03/18/15 ~ Received a summary of MRI assessment from my gastroenterologist at Kaiser. All the news was good except for an undecipherable comment about my liver. My first response was WTF does this mean? 

"Vague, nebulous enhancement is detected immediately caudal to treated lesion in the posterior aspect of right hepatic dome as demonstrated on image 19 of series 8. No discrete, early arterially enhancing lesion with rapid washout is seen within liver." 

Daily walks around Sebastopol: perfect Kerfuffle antidote. 

Ragle Park

03/19/15 ~ Contacted my Kaiser gastroenterologist and requested a translation to plain English, but even she didn't know what to make of it. 

• Emailed my Kaiser/UCSF Coordinator (based in Oakland) and ask her to make sure MRI and assessment got to my UCSF doctors since they had been treating me since 2013. 
• She explained I no longer had a coordinator since I was off the transplant list and she couldn't help me. She said my Kaiser doctor would have to request an authorization, but not how to do it. Argh!

03/24/15 ~ Emailed my backup doctor at UCSF (primary doc on maternity leave) about MRI. She said she'd request further information from Kaiser and would get back to me.

04/01/15 ~ Hello anyone home? Still no word from Kaiser or UCSF. I emailed my Kaiser gastroenterologist again. She had been able to reach UCSF doctor who said she'd ask for MRI images and that a verbal authorization is enough for them for now. Not sure that would fly, she placed a written request for authorization as well. 

04/02/15 ~ Received a written authorization for medical care through 09/30/15 and it requested I make an appointment with my UCSF doctor. I set it up for May 11th. The same day I received a call from UCSF that the authorization hadn't been received, even though it had been faxed twice by Kaiser to number given by UCSF. Really?

04/09/15 ~ Received call from scheduling at UCSF who wanted clarification on Authorization and what it was for and ask that I fax her a copy. Seriously, she's asking me? She also said authorizations are usually only for one visit, not multiple visits through end date. My guess is that the authorization only covered review of my MRI. 

04/17/15 ~ Got word that the UCSF Tumor Board had met and recommended another TACE on an area previously treated, there may be a small residual tumor there. Sounds like one of my pet hepatocarcinomas, Audrey or Carmine, has busted a seam and stepped out of bounds. Since I'm no longer on transplant list the TACE requested may be performed at Kaiser San Rafael, but even that isn't clear at the moment. Still haven't heard from them. 

UCSF has not been at all clear on this transition and hasn't communicated what they need from Kaiser departments, doctors or me for that matter. On the other side of the coin, UCSF says Kaiser is not very cooperative about protocol and picky about what they'll approve.

"So what we have here is failure to communicate"

Strother Martin ~ Cool Hand Luke

"The single biggest problem in communication 
is the illusion that it has taken place."

George Bernard Shaw

Oxymoron of the week

"Sounds like Congress in Action"

I said that

My primary doctor at Kaiser is prepared to start rattling cages by the end of the week if this isn't resolved. I found out last night that my primary doc at UCSF returns on May 5th. She sent me a message to give her a call. Perhaps we can finally get this train out of the station.

Train

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De-Liver Me Tour ~ Game Changer ~ February 5, 2015

A "Game Changer" is a newly introduced element or factor that changes an existing situation or activity in a significant way. The adenocarcinoma on my pancreas is a different cancer than Audrey and Carmine, the hepatocellular carcinomas on my liver. What this translates to is that I am off the liver transplant list for now. I will have to remain clear of pancreatic cancer for 3-5 years before I can be reconsidered. I totally understand logic, especially with so few livers to go around. Truth be told I am actually a bit relieved. The prospect of major transplant surgery, being out of sorts for several months and on steroids and immunosuppressents is a little hard to fathom right now.

Storm Clouds and Sunbeams

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Small blessings ~ Sometimes the least expected is a blessing in disguise. I was close to the top of the transplant list when the pancreatic tumor was discovered with a CT scan and biopsy late last Fall. Had it not been discovered early, and before the liver transplant, the immunosuppressents and steroids dictated by a transplant would have prompted the pancreatic cancer to run wild. 

We met with my oncologist today and as he walked in the door he smiled at me and said "Survived another one, eh?" Here is what we learned. 

Staging ~ The staging of cancers is a complicated process, but here is the country girl's guide to short and simple. 

1 ~ tumor is 2 mm or smaller and hasn't spread to lymph nodes
2 ~ tumor is over 2 mm and hasn't spread to lymph nodes or body
3 ~ tumor has involved lymph nodes but hasn't spread to other parts of body
4 ~ tumor has spread to other parts of the body

I rank as a Stage 3: My surgeon removed six lymph nodes, though only one of the six was was involved. A generalized rule is that patients at Stage 3 have a 60% risk of recurrence of cancer returning or showing up someplace else. 

Normally, in this scenario, chemo would be offered as a preventative measure to keep cancer from returning to my pancreas. However, at this point the cancer is gone and chemo could facilitate the growth of the liver cancer because of compromised immune system from removal of my spleen. It might also cause a flareup of the Hep C which has almost reached "cured" status. Can you spell NO THANK YOU? I swore years ago that I would not do systemic chemotherapy. I've watched too many friends endure hell for no apparent benefit. It's all about the quality not the quantity. 

Under the microscope - Starting today I'll be doing a quarterly blood test called CA19-9 which helps detect early recurrence of cancer. At surgery the marker registered 294. Today's blood test will establish a new baseline, hopefully with a much lower one. I will touch bases with my oncologist again in May. Also, the letter from Kaiser that approves an additional year of medical care from the Liver Transplant Unit at UCSF just arrived in the mail. This is all good news. My orders are to continue to take care of myself: exercise, eat healthy and travel at will. We can do that!

Life Expectancy ~ I had to ask the question ~ There is no one answer, only averages from large trials and large patient data bases and it is only a rough guideline. In a worse case scenario, if the cancer comes back or spreads and cannot be removed surgically, life expectancy is about two years. We are all different though so you cannot read much into that. Considering the odds and bullets I've dodged so far, things are looking brighter than expected. I may indeed outlive the October 2017 expiration date on my American Express Card and see my mid seventies. 

On the Horizon ~ Damn the torpedoes, full speed ahead! We have friends to visit, seasons to experience, and blue highways to explore. Alberta is calling, we've never seen the east coast in the fall, the aurora borealis, or the poppies in Antelope Valley. The possibilities are endless. 

Alberta 1997

Northern Lights

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Horse Bridge Pawtuckaway State Park

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De-Liver Me Tour ~ Sisterhood of Traveling Body Parts

January 7th: Oh boy surgery day. The game plan was to remove the tail of my pancreas (home of said adenocarcinoma) and my spleen with a combination of a laparoscope, robotics and the capable hands of my doctor. The surgery took about 6 hours. I was, of course, on another planet and haven't a clue as to what was going on. Since the doc was in the neighborhood she also checked on my liver and found a small hepatocellular tumor and with Rod's permission removed it. 

January 8th - 9th: Me and Mr. Wheels my best buddy and travelling companion for 3 days. Patients are encouraged to get up and walk as soon as possible, as it helps get your digestion system moving again. You are also encouraged to make good use of the patient regulated pain medication day and night. It's easier for your body to heal if you're not dealing with pain. Sounded reasonable to me. And who knew a catheter could be such an asset when the simple act of getting out of bed was to much to contemplate. 

Day 2

Clear liquid and liquid diets suck big time. I realize it's necessary, but where's the nutrition? They kept trying to push soy milk, fruit juices, vanilla pudding and bouillon, holy blood sugar Bat Girl. The one positive note is that I developed a new fondness for Cream of Wheat. Once I graduated to real food on Day 4 the menu was a lot better. 

I can't say enough about the doctors, nurses and staff at Kaiser SF. Some of them were working long shifts, but always made sure their patients were their first priority. They were professional, caring, supportive, and full of fun. Laughter is, after all, the best medicine.

Got unplugged day 4 and graduated to a walker and free range of the corridors. Also got to take a shower. I had a little private bathroom with a hand held shower head. The stuff they gave me for shampoo (I use the term loosely) was the consistency of snot and didn't soap up. It made my hands slick and it was hard to control hand held. I ended up spraying down my nurse, the towels and my gown. We both about collapsed in a fit of laughter. 

You know those little things in life you often take for granted? Well surgery brought the concept to a whole new level. Farting, pooping and walking were manna from heaven in my book. Whining, being cranky and cursing like a sailor are part of the healing process, so attitude is encouraged. 

Rod busted me out of the hospital on the afternoon of the 12th. Evidently one of the side effects of surgery and being on your back for 5 days is inflamed joints. I walked out of the hospital unassisted but Holy Knees Louise I could hardly walk the next day. I went to see my primary doc at Kaiser SR and had to have a wheel chair. She came in, gave me a smile and said "You are human, this is the first time I've seen you even look slightly tired during this entire journey. You must be related to the Energizer Bunny." 

Show me the exit

Things are pretty much back to normal and then some. We're back to walking 1.5 to 2.5 miles a day. My belly still looks like I walked into a load of buckshot: four holes for the laparoscope and drains and one incision with five or six stitches. All were closed with Steri-Strips that were supposed to fall off in two weeks. Mine seem to be related to NASCAR 200 mph duct tape, 19 days and they were still holding fast. Got permission to gently pull them off. Oh Yeah!

WTF moments: Since the surgery my platelet count is adequate for the first time in 2 years and I'm not bruising at my insulin injection sites. The answer is no spleen, platelets can once again roam at will. I'm sleeping better, my acid reflex has abated, the sporadic leg cramps have ceased and my alligator skin has improved. You just never know.

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. 

De-Liver Me Tour, Top of the 7th, Rain Delay Part II ~ Dec 15, 2014

Update ~ It was raining cats and dogs on the way to San Francisco. We were expecting the worst, but much to our surprise drivers were being sane, courteous and careful. Decoding the parking map for Kaiser was a bit of a challenge but we prevailed and got a bit of a walk in.

Raining Cats and Dogs
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My doc told me ahead of time that he was going to do a biopsy so we could get a definitive answer as to what we were looking at. Cystic masses are quite common on organs of the body, but this one appeared denser than anticipated which was the cause for concern. We should have the results in 7-10 days. I'll remain on the Liver Transplant "pink list" accruing points, but not eligible for transplant, for the time being. 

All went as planned, and it only took about two hours. The crew was great from admissions, to the procedure room, to the "park her here until she lands back in this world" recovery area. There is something to be said for conscious sedation. I don't remember a thing, even the post procedure conversation with my doctor. Good thing Rod was there. 

Rays of sun peaking through the clouds

Watching the sunset of nature's splendor 

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Just heard from my Team Pharmacist ~ There is no longer any evidence of the Hep C virus detectable in my blood: zip, zero, squat. I'll remain on the Ribivarin and Sofosbuvir drug regimen to keep it so until the transplant. 

Time to Celebrate

 December 21, 1986

Gold Hill Hotel in Gold Hill, NV

But Seriously Folks

with our witnesses Barbara and Steve Novacek

Our 28th wedding anniversary is on Winter Solstice, December 21st. Since I am on medical hold at the moment and off my leash, we've decided a little adventure would be an great way to celebrate. We're going to spend a couple of days at the Timber Cove Inn north of Jenner. Foul weather means fireplace, reading, King's Cribbage and great food. Good weather means exploring the neighborhood, coastal walks and great food. We're talking win win here. 

De-Liver Me Tour ~ Top of the 7th, Rain Delay

Update

I got a phone call from my doc at UCSF, the Tumor Board reviewed my most recent CT scan. Audrey and Carmine are still there of course, but the good news is that there are no new tumors. The Hep C virus is still detectable, but at such low levels the lab can't assess how much, only that it is unquantifiable. We are headed in the right direction.  

Rain Storm
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Rain delay due to elements beyond our control

The CT scan also revealed a small cystic mass on the tail of my pancreas. It is not a typical location for liver cancer to spread, but it does raise concerns. This development puts me back on the pink list for the moment, inactive, but still accruing points. I'm not quite at the top of the list yet, but if I was and a liver became available it would go to the next person waiting. This may seem harsh, but it makes total sense. 

The next step is a trip to Kaiser San Francisco for an endoscopic ultrasound. If a sample of the mass is needed to determine its nature, the doctor will do a fine needle aspiration while I'm there. I will be in the "twilight zone" and feeling no discomfort. The first appointment available was 3:30 pm on December 15th. It is of course Trisha's birthday, so I'm taking that as a good sign. The biggest pain is going to be surviving 15 hours of no solid food other than jello, bouillon or fruit juice before 9 am. I'll be chewing on my arm by the time we get released in the late afternoon.

If is it only a cyst I should be able to return to active status on the Transplant List. If the lesion on my pancreas is cancerous, the next step will no doubt be surgery to remove it, but we'll cross that bridge IF we come to it.

The Warrior Queen

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For now I remain the fearless warrior: we have our sites set on Alberta next summer and perhaps a trip to the Northeast and the Maritime states for autumn color. Taking the year off from our usual craft fair circuit was a good choice. We've been able to relax and work around the Rancho. Rod is Santa this weekend at the Garlock Tree Farm in Sebastopol. He's so totally in his element with the kids. Just call me Mrs. Claus. 

The Little Things in Life ~ December 7, 2014

You can have an impact on a stranger's day or life with a simple act of kindness. Toss a small pebble into a quiet pond and watch it's energy move outward in infinite rings. We all have the power to make a difference.

Pond Ripples

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I was at Kaiser Friday morning for my weekly blood tests. When I came out of the building entrance, I noticed a little lady with a cane standing on the opposite curb across the driveway. Without thinking I walked up and asked it she might like a hand stepping down. She looked up, gave me a big smile and reached for my hand. She asked if any cars were coming and I signaled to a red Jeep starting to pull into the lane. The driver gave a thumbs up that she'd wait. I walked with her across the road to the sidewalk. We said goodbye and she was on her way. 

As I turned back to cross the driveway the Jeep driver pulled up next to me and rolled down her window. She was smiling and had tears running down her face. All she said was "That was the sweetest thing I've ever seen."

I was floored and pretty much spent the rest of the day grinning. No matter what is going on in your life, there is always room to give a little: a smile, some assistance, or maybe just a thank you. Pay it Forward.

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. 

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!

Bottom of the Sixth ~ October 28, 2014

I had no idea when I started the baseball analogy for the De-Liver Me Tour that our San Francisco Giants would be in the World Series. Parallels abound. You just gotta BELIEVE and no one knows that better than I do. 

I Believe 

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I'm on the transplant list at UCSF because of liver cancer. My tumors, Audrey and Carmine, have been kept in check with the six TACE treatments I received at UCSF between May 2013 and August 2014. The next step is to take care of some existing conditions to prepare for the journey to Transplantville.  

I have adult onset diabetes. I don't have the body type but I do have the genes. The HbA1c blood test provides an average of your blood sugar for the previous couple of months and shows how well your diabetes is being controlled. My HbA1c has been on the climb since March 2013. The ideal level is less than 6.0 and mine was hovering at 8.1 range the last time it was checked. There are a number factors that may contribute to the ascent: genetics, age, a tired pancreas, the TACE treatments from Hell or my compromised liver.  I had been able to keep my numbers down with just an oral medication, but that train has left the station.  

Cowgirl Up

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Damn, it's time to Cowgirl Up and take the reins. You know: pay attention, be responsible, take charge. The bottom line is that uncontrolled diabetes can increase your risk for infection and slow your ability to heal after transplant surgery. I'm working with a clinical pharmacist at Kaiser to find a long term solution. I've started doing insulin once a day. I've always had a dislike of needles, but it's a simple and painless ritual. We are also adjusting current oral medications.

I also have Hepatitis C. It's important to have the Hep C virus undetectable in my blood at the time of transplant. On October 17th I started the Ribivarin and Sofosbuvir drug combo. To my delight I am experiencing none of the dreaded or expected side effects and my health plan is covering a majority of the cost. I will be on the combo until the transplant. Having my blood clear of the virus decreases the risk of exposing the new liver to Hep C. We're looking for longevity here, there are still a good number of things on my To Do List. 

So there are definitely some new routines in my life. I've got a system and a schedule set up so I remember what to do when and to track notes and progress. It's a tedious little job, but a small price to pay for long term results. 

I've licked Breast Cancer and I am a Warrior in Pink. Now I'm down to liver cancer, diabetes and Hepatitis C. For some this would seem to be a three strikes situation, but I look at it as only a small part of who I am. Bottom of the sixth, score tied, two out, bases loaded and I need a miracle. Call me Mo'ne Davis in an elder suit. Play like a girl, fight like a girl!

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Following my train of thought to the next station I decided to find out what the ribbon color is for liver cancer. Come to find it's emerald green, which seems somehow appropriate for a girl born on St. Patrick's day. I just ordered myself a black zip up hoodie sweatshirt with this logo. Time to wear it proud and encourage others to fight.

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.