Map Maker, Map Maker…Make Me A Map

The map maker told me it was just routine to have patients hold identification signs with their pertinent data, but why so much interest in my tye-dye Oregon Duck shirt? Then I noticed his Washington Husky jersey!! Warning signs flashed before my eyes. What was this dawg plotting?

Over the past couple of months the level of pain in the left side of my back has gradually increased. Initially I attributed it to my ongoing battle with post polio, but the pain only got worse, to the point where excruiating pain was my reward for getting out of bed in the morning. Me and Mr. Morphine were becoming fast friends.  

I was aware that a large tumor in my left lung was invading the lung lining and nerves in and around my ribs. It appeared that a consultation with my radiation oncologist was in order. Based on our previous conversation last fall I was not optimistic. But much to my surprise, he was quite confident that he could eliminate most of the pain and do it with only a single radiation session that could be repeated if necessary. He felt the initial session would give me six to eight months of relief. When I asked him what the down side trade off would be, after initially saying “nothing,” he further pondered and said I might have a little “sun burn” effect. Wow!!! My mapping preparation shown above was done on Friday and the 30 minute radiation therapy is on Tuesday morning. I should be feeling much better by my birthday!!

As wonderful as this is, it is purely palliative. It will do nothing to stop the cancer, but will deal with pain elimination. It will improve the quality of our (Lee and mine) lives. I am still on hospice and hospice is doing a great job for us. Meet my primary hospice nurse.  Solving problems is her game, Liz is her name.

One of Liz’s solutions was a hospital bed. My initial reaction was, shall we say, less than enthusiastic. But it immediately increased my sleep from three hours to six hours per night, which should further improve after my radiation. Of course my bed is not your ordinary hospital bed. Thanks to Linda, Harmony, and Jenny it is a cocoon providing protection against the demons. Linda, a master quilter, created the beautiful and powerful Duck quilt, and the Duck Pillows came courtesy of Jenny and Harmony. They will provide a peaceful and restful refuge.

And finally please meet Sam, my latest pet portrait. Sam lives in Sacramento and is an avid biker who rides in a trailer attached to his human’s bike.  

Advertisements

V.I.P.

Jimmy’s parking

Our splurge night on last week’s road trip was Thursday evening with dinner at Jeffry’s, Moab’s finest steak house, and lodging at “Sunflower Hill, A Luxury Inn.” Sunflower Hill is a half block collection of renovated homes surrounded and infused throughout with beautiful gardens. It is a colorful, peaceful and relaxing spot staffed by a very warm and accommodating folks. I was their “test” guest last week and they passed the test with flying colors.  

Vintage inns, boutique hotels and B&Bs appeal to me. I prefer uniqueness over cookie cutter hotels. I’d choose charm over efficiency unless I am on a business trip or due to any physical “challenges” I may be encountering at the time. In the past couple of weeks I have been challenged by a lower back muscle that is severely strained. To remedy this situation I have to dial down the force my leg brace applies to my back. Unfortunately, reducing the force makes Jimmy less stable and more likely to fall. So stairs are even less friendly than normal and stairs without handrails are a big no-no. Well we thought we had addressed the hand rail issue for the stairs into the room, but what wasn’t addressed were all the stairs leading into the various buildings and lack of handrails throughout the property. Normally three or four stairs is doable even for me, but not last week. 

When we arrived there was only one room that did not have any stairs. Fortunately we were able to make the room swap and our gracious host asked another guest to move his car so that we could park closer to the building entry. I merely mentioned that we had dinner reservations and how could we insure our spot would still be available upon our return? He said he’d make a sign and he made a dandy for this VIP. You will notice that the sign is even laminated, a key feature to protect it from the elements. Thunder, lightening and monsoon rains had been following us all day and were scheduled to arrive at Sunflower Hill.

About an hour before our dinner reservations, the heavens opened up. Rivers suddenly appeared, small cars floated by. The skies were like a waterfall. How were we going to get to and from the car?  Little Lee came to the rescue with “trash bag” ponchos…..perfect attire for an upper crust dinning establishment. When I walked into the restaurant, the table closest to the door looked up. And what to their eyes should appear is perhaps a homeless man in his trash bag pulling it up over his derrière. Her eyes grew large as I smiled and exclaimed, “whew it’s wet out there, pardon me while I disrobe for dinner.”

We thoroughly enjoyed Monument Valley, unfortutely Arches was monsooning, so we skipped it. 

The weather liars had the game day forecast all wrong, what a shock! But just as well. With my brace and back issues it would have been very difficult for me to maneuver and tiring at the 7,200 elevation at Cowboy stadium. So instead we headed down to Canyon de Chelly, just outside of Chinle…another dry town!  

With its tall red canyon walls, some with cliff dwellings, contrasting with the vivid green of the cottonwood, it was beautiful.  We took a private 4 wheel drive tour to explore the canyon from a life long resident, who had many interesting stories.  Although they weren’t quite as interesting the third time we heard them.  

From Chinle we drove back to Quail Creek where our neighbor Bob had a nice Cabernet Sauvignon for us to suck down as we gnawed on BBQ ribs and another Duck victory.  

On the cancer front, in addition to my strain, I have had trouble sleeping at night due to moderate back pain. Me and my buddie morphine seem to have it handled now, but unfortunately it was disruptive on our little trip. My palliative care nurse recommended a nurse who practices various relaxation and healing techniques such as Acupressure, Reiki, Healing Touch and other techniques. I had my first session today. Next week I will meet with my Radiology Oncologist to see if there are any logical palliative options to do a bit of shrinkage and still working on the targeted therapy.  

Adaptation

Today is the first day of our latest little travel adventure. Our pursuit is to maximize enjoyment of life in this “in between” time. We are spending this evening in Tuba City, AZ. Not exactly the gourmet capital of the world. Denny’s is the top rated restaurant. It gets worse. This is  a dry town. Fortunately, we have a portable wine cellar in tow and I anticipate take out pizza is tonight’s fare. 

Approaching Tuba City, the painted hills are striking.

You may recall that our snowbird friends from Steamboat Springs invited us to visit them at their alpine hometown, enjoy some fine wine, great company, the golden Aspens, and then travel to Wyoming to root our Ducks on to a, so far, undefeated season. A great plan! Lee even improved it by planning couple of days upfront to explore Monument Valley  and Arches National Park on our way to Steamboat…most excellent. Many plans were made including the purchase of DUCK tye-dye vintage logo shirts.

However the weather gods decided to literally piss on our parade. The forecast for game day on Saturday was constant rain in the low 50’s at kickoff, and down to the mid 30’s overnight. Sounds like fun if you are dumb and in your 20’s, not so much if you are pushing 70 with cancer and a suppressed immune system. I really didn’t want this to be my last Duck game. So, Monday afternoon an executive decision was made to sell our Duck tickets on line. We sold two tickets Monday night and the other two Tuesday. Lee got on the computer and changed our return through Canyon de Chelly, with a three hour jeep exploration trip. Should be a great adventure and we hope to watch the Duck victory on TV. Not what was originally planned, but adapting to the situation while keeping the goal of enjoying life front and center is what we do.

Our previous mini trip was to Capistrano Beach, CA. The sight and sound of the ocean inspired Lee to create the painting below and she is working on another from that trip.

Capistrano Beach

Jimmy has been catching up on pet portraits with a memorial to Zunie, a rescue puppy who lived a long, full and adored life. As you can see an elderly Zunnie just returned from the puppy parlor after getting her fur all done up, complete with pretty bows.

Zunie

Macho Man

Yesterday morning over breakfast Lee reminded me of a project that we needed to get on the calendar, a project neither of us relished. The project had been on my mental calendar for a couple of months and I have found that as a master of procrastination, placing an undesired task on the calendar is of little value other than codification of something to put off. In olden days, if you wanted to delay an undertaking on the calendar, you had to erase it…rarely successfully, as you could see the shadow of the project as a reminder of your failing as a human being. But today with electronic calendars, there is no evidence of procrastination. However, yesterday I needed no stinking calendar, I was a man of action! As soon as I had read the details of Saturday’s glorious DUCK 77-21 victory for the fifth time, I sprung immediately into action.

The little woman of the house was not prepared for such bold action. She was not expecting me, nor wanting me to do the project myself. She reminded me that we had many friends and neighbors that would be glad to lend a hand. Silly girl, she obviously knows little about MACHO MAN!

Most of you are aware of my challenges of nearly seven decades. But I do not want or readily accept excuses. Obstacles are to be overcome. Even with my life of physical limitations I have usually found “workarounds” to accomplish the task at hand and that results in enormous personal gratification. So what if I am now facing muscle wasting from the combination of cancer, prednisone, and post polio. I laugh at it, ha! But even with my normal predisposition to tackle the task head on, my mental state was amplified beyond belief last week during our California vacation when my friend Max rolled out his Harley Sidewinder, the macho man of all bikes. Look at my macho transformation: hat on backwards, no helmet and a bone-chilling snarl!

harley snarl 2.JPG

I completed the Sunday project with only one bad muscle strain. I had budgeted for much more pain because I am MACHO MAN! All kidding aside, so far I am more than holding my own with the muscle wasting. I put a program in place and feel stronger than I did two months ago. But I know it will be an ongoing battle.

We had a great trip to California. Anita and Max live on the cliff overlooking the Pacific Ocean. It is gorgeous, inspiring and peaceful. Just what the doctor ordered after two-and-a-half years of stress. The ocean feeds all of your senses. It is cathartic. Lee was enthralled and is currently working on a painting from our seaside adventure.ocean.JPG

But the ocean is not the only elixir for stress. I have found fine red wine to be quite effective as well. As luck would have it, Jimmy’s quest for rare treasure was once again rewarded when I spotted a Shafer 1985 Hillside Select Cabernet Sauvignon tucked away along with Marcassin, Colgin, and other liquid loot in Max’s cellar.wine cellar.JPG

We had a fabulous dinner at Selanne Steak Tavern in Laguna Beach (a definite must try) where we enjoyed the Hillside Select and a 2005 Colgin Tychson Hill.dinner.JPG

Then we were off to a world class art show at the Festival of the Arts along with the Pageant of the Masters. The Pageant of the Masters is a unique and amazing multimedia presentation that has been a sold-out staple in Laguna Beach for eighty years. It runs for six weeks each summer.  pagent.jpg

The next morning we headed to a rather unusual neighborhood wine shop called Bob’s. Cheap everyday wine along with OMG rare wine and a really large selection of ordinary candy bars. If you want a vertical of Mouton, Bob’s has it. If you want a Cup of Gold candy bar, Bob has it. Ordinary candy bars and the rarest of wine? It is a strange and unique shop. Bob sits in his Barcolounger chair as you meander about. I inquired about a vertical of Heitz Bella Oaks Cabernet. The Bella Oaks vineyard from the 70’s and 80’s was known for luscious fruit and soft smooth tannins. He had some, but not a vertical…not that I would have purchased it anyway. But he did have an obscure wine, “Chercher Trouver” 2009 Blackwood Vineyard Napa Valley, that he claimed was of the Bella Oaks style and flavor profile.  I purchased one and boy was he was spot on. Delicious.bobs.JPG

After nearly destroying Max’s new mail box as I backed out of the driveway, we said our good byes to Max, Anita, and the cool ocean breezes to head back to the desert to visit Oregon friends, Ken and Susan, who have transplanted themselves in Palm Desert. It was a 35-degree jump in temperature in the two-hour drive from the coast. It was beautiful in Palm Desert as well, at least from INSIDE the house. Yikes was it hot. But it was great to see old friends, toot around Palm Springs and Palm Desert, listen to Frank Sinatra, and reminisce. ken susan.JPG

It has been a while since I have completed a painting. But that is changing. I’m back in business. The editor of the Green Valley News, who has been very supportive of my mission to help people faced with terminal illness, commissioned a painting with two conditions: 1. A blue background 2. No painting of a Duck. A graduate of the University of Arizona, he is definitely NOT a duck fan. So, I painted him “A Very Wild Cat.” Lee and I got all Ducked out and presented it to him last Friday.

P.S. it says “GO Ducks” on the back.  Great fun!gvn wildcat

If you get the feeling from this post that we are having fun, you are correct.  I am on hospice, this is what early hospice is about, living life to its fullest. I am still in contact with my research oncologist, but until something materializes, I will remain on hospice. Next week Lee and I embark on our next adventure to Monument Valley, Arches National Park, visiting friends in Steamboat Springs, CO and then attending the Oregon Duck game in Laramie, Wyoming. Hospice is taking good care of me as I travel. They will be providing oxygen several days before we leave should I need it for the higher altitude. But I may lend the oxygen to the DUCK mascot to help him with all the push ups he has to do for every point the DUCKS score.

Party on dudes and dudettes!

 

The Butterfly Palace

In the Spring of 1997 my then boyfriend Jim Asbell, planned a romantic weekend getaway to a place I had always wanted to visit. The wine country of Napa Valley, CA. The valley was an old friend for him and he delighted in plotting all the wineries and fabulous restaurants he wanted to visit with me.

In the days before the internet and smart phones we picked a secluded B&B, sight unseen and crazy expensive, tucked in the hills. We never met the proprietress. Her minion escorted us to our suite. Every inch of the bedroom, sitting area and bathroom were covered in butterflies. OK, so maybe the toilet did not have a butterfly seat, but just about everything else was draped, festooned, or piled with butterfly trinkets. The effect was frightening, and so were the under-cooked Costco mini quiches that constituted breakfast.

While the Butterfly Palace as it came to be known, was heinous, the trip was a delightful mix of food, wine, and romance that included a mud bath for two. That spa treatment turned out to be two tubs filled with hot water, gritty sand, and excessive aroma therapy. We laughed our heads off.

Two years later we were back in that same valley to get married at Storybook Mountain Vineyards so I guess the whole weekend turned out to be something very special.

Today, on my 56th birthday, James surprised me with this beautiful necklace. He commissioned our very talented friend, Marj Berra, to make this copper and turquoise butterfly necklace to remind me of that wonderful time in our lives together. Butterfly necklaceAnd just for your viewing enjoyment, here is a younger version of my guy, snoozing away in the famous bedroom of the Butterfly Palace. Somehow he had accidentally bought black and white film for his camera, so your eyes will be spared the full blinding effect. Am I a lucky girl, or what?butterfly palace

 

Today’s Green Valley News Column

I just got back from my barber.  He is a pretty cool barber who, in his earlier years, was a barber for movie stars in Hollywood. Upon retirement he set up a barber shop (complete with vintage chairs, barber polls and autographed photos of stars) in his golf cart garage. Golf cart garages are very versatile, we turned ours into a wine cellar.

Along with chatting about vacations and such, we discussed today’s column about my early entry into hospice.  It had not occurred to him to interview hospice companies, especially at such an early time.  He was blown away that there were so many hospice companies serving Green Valley.  I explained  that choosing hospice is like going to a restaurant and choosing something from the menu as opposed to just getting the leftovers.  Other than Lee’s fantastic leftovers (I almost blew that one) leftovers are generally uninspiring.  If you wait until a health crisis you take want is put in front of you instead of making a choice.  That made sense to him.

The first week of hospice was busy, many hospice staff to meet and it certainly has good for business, Lee’s art business.   She sold two paintings.  The first painting was a Buddha a couple of weeks ago and the second painting is the barrel cactus below.

barrel catus blooms
Barrel Cactus Blooms

Even though I do not consider myself currently “in need” of hospice services, I was pleasantly surprised that I can already benefit from some of them.  I miscalculated a medication and would have run out on our upcoming trip to California, my hospice nurse Liz got on the phone and I had the medication delivered to my door that afternoon!  Liz was a pulmonary therapist prior to becoming an RN and she was certain that I will benefit from oxygen on our September trip the Rockies and the DUCK game in Wyoming with altitudes in the 7,000 ft range.  So she arranged for a portable tank to be delivered two days before our trip so I could get used to it before the trip.  Its all about maximizing quality of life.

liz.jpg
My RN Liz to the rescue!
GVN 8-23-17
Green Valley News 8-23-17 Column

Bottle Shock!

In 1976 a wine merchant in Paris organized a competitive wine tasting between the best Bordeaux wines and select Cabernet wines from the Napa Valley in California. The identity of the wines were concealed and all of the judges were French with impeccable professional credentials. At that time the French considered Napa Valley wines substantially inferior. Guess who won the tasting?stags leap

This tasting established Napa Valley as world class wine. Guess what wine Lee and I shared courtesy of our friend Paul? The actual wine at the tasting was a 1973 vintage, the 1974 vintage we enjoyed was actually higher rated than the 1973 that won the tasting. This 43-year old bottle of wine was incredibly fresh and vibrant. It was truly amazing.

server.JPG
The sommelier opened our treasure flawlessly and was rewarded with glass of wine which he whisked away to his office, dancing the whole way.

We enjoyed many wine treasures last week. It seems that Paul has an endless supply! I was determined not to buy any wine on our little side trip to Walla Walla wine country and even asked Lee to kick me if I wavered. Fortunately Lee kicked my left leg, which is protected by my brace, so I didn’t feel a thing. I joined two wine clubs and purchased wine at a third winery. Jimmy was having fun!

Beyond our incredible wine adventure we explored the Oregon’s Painted Hills, the John Day Fossil Beds and the lakes in the Cascade mountain range around Mt. Bachelor. Lee and I had a fabulous time and a much needed break with our friends Paul and Linda.

hills.jpg
The Painted Hills in the background
lake.jpg
Enjoying a beautiful day at Cultus Lake

Today we visited with Dr. P to review my CT scan from yesterday and to plot and plan our next step. Overall there has been disease progression since the last scan seven weeks ago. Some tumors did not grow but most had modest growth. What we previously thought to be a lymph node under my collar bone, turned out to be a metastasis on the top bone of my rib cage. The good news is that I feel great. My cough is under control, no temperature, sleeping well, no fatigue and a healthy appetite. I am working out at the gym five days a week and tomorrow I will resume working on a painting.

This afternoon I made an appointment for Tuesday to sign up on Hospice as I discussed in my last blog. Since I have this “no treatment” window, this gives us a perfect opportunity to get acquainted without a crisis environment. We anticipate that our research oncologist, Dr. M, will contact us in the next month or so regarding the “off label” treatment options and I continue to review clinical trials. Should I wish to pursue any treatment I will simply revoke Hospice.

In the meantime I believe it is approaching the cocktail hour.  Live life to its fullest!!