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. And 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?
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.
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.
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?
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.
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.
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!!
We’ve been very busy here at colon cancer central this past week!
It seems like forever since I had my liver biopsy, but Dr. M (my research oncologist) finally received the report of my tumor’s biomarkers and genetic mutations. They tested 592 genes. In comparing this report with the previous report in December, he hoped to find changes in the genetic makeup of the tumors that would facilitate new ways to treat them.
Although there were no major changes in the tumor makeup, there were some changes that he thinks supports targeted therapy. One mutation my tumor previously had was PTEN, but it is now gone. Poof. He wants to use a type of drug called a PARP inhibitor by the name of Olaparib. Tumors without PTEN have shown success with PARP inhibitors. Olaparib is approved by the FDA for ovarian cancer. So he will gather his data and apply for “off label” use of this drug to attack my tumors based on the lack of PTEN. He will also do this based on other mutations with a drug approved for use in metastatic melanoma called Trametinib. This off-label request to the big pharma companies usually takes a month or two for a response. Insurance does not cover any of the cost associated with off-label drug use. He is confident that he will obtain approval.
Although this targeted treatment is not a cure, it is in the “buying time” category. I’m all for buying time so long as it is quality time. With the lack of compelling clinical trials in Arizona right now, Dr. M thinks this is the way to go for me at this time. Lee and I could relocate to another part of the country in pursuit of some more interesting trials, and I have contemplated such action now that my kitties are gone. But the stress and risk of a trial, combined with the relocation stress, along with lack of the support from our wonderful friends, make it unappealing. So we will stay put and see what choices unfold.
My last post, “Cough Be Gone” was unfortunately premature. What works for a cancer patient five months ago, doesn’t necessarily predict on-going success. In January and February, 40 mg of prednisone shut down my cough. I am now on 60 mg and still have a grade 2 cough. Of course that is much better than what was closer to a grade 3 cough previously, but a cough nonetheless. The cough scale is 0 to 3. The prednisone is doing its job of shutting down inflammation. Before prednisone I was running a 2-degree above normal fever. Yes, my darling tumors are like little internal heaters. Makes me all warm and bubbly inside, which I hate. I like my bubbly to be chilled, thank you. Without prednisone I had to alternate between Tylenol and Ibuprofen throughout the day to keep my temp down. My temp is now normal. So why the continued cough? Well, my larger lung tumors secret gunk (sorry for the technical term) which irritates my lungs, causing a cough. OK, so a grade 2 cough and normal temperature is much better than a grade 3 with constant fever. Thank you prednisone.
We had another fun cancer adventure this week. We interviewed four Hospice organizations. There are about twenty that serve our area. You may recall that we interviewed one last year just to get a better understanding of services, limitations, etc.
This time we are selecting a Hospice to utilize. I do not want to die in the ICU hooked up to blaring and blinking machines with tubes running in and out of me and nurses poking me with needles. Hospice is the best way to protect me from such misery. I would much rather pass looking out my window at the Santa Rita mountains with Lee and my friends around.
Right now I am not in active treatment so it would be off to hospital land in the event of a serious health problem. We will sign up with Hospice in the near future, perhaps as soon as next month’s medical testing is complete. This is primarily to establish a care relationship so that during the time I am not in treatment, I can manage my health in the manner I want. That will happen even if I am fully capable of functioning, walking, talking, and drinking fine red wine. I can be actively looking for trials, or while I am waiting for Dr. M to get off-label approval from the pharmaceutical companies, I can be on Hospice. They send out a nurse every other week to check on me. If something happens, no trip to the ER for Jimmy. They come to me. If an appealing treatment option appears, I revoke Hospice and proceed with the treatment. If it doesn’t work out, I reactivate my Hospice service, even while looking for new trials, if I so desire. I think it is a win win scenario. Keeping options and flexibility open while protecting me from my worst fear.
Going on Hospice early is the smart thing to do but very few patients do this. Studies have proven going on Hospice early helps people with life-threatening illnesses live both longer and better. It sure as hell does NOT mean I am ready to croak or have given up.
We selected a Hospice that has more nurses locally, instead of in Tucson, and that offers more medical services such as PCA pain pumps and IV using my chemo port. More options to keep Jimmy home and comfortable if necessary. As an added bonus, the Hospice representative fell in love with one of Lee’s paintings and is purchasing it. It is one of my favorites.
Life as a currently incurable cancer patient is unsettling to say the least, but there can be wonderful moments as well. As most of you are aware I write a monthly column for the local newspaper, the Green Valley News. I am so grateful to the newspaper for providing me this forum to enlighten people and perhaps make a difference in their lives, hopefully for the better. This past week three people provided me with an affirmation. One sent me an email thanking me for writing the column, another shared in person her journey and the help my column provided them, and the third person sent me an email asking me for help in navigating the shock and horror of diagnosis, how to do research, the questions to ask, etc. Lee and I went to their home to work with them. The Hospice representative we chose, took my book and plans to use it as an inspirational vehicle for some of their patients. These four events invigorated me with renewed purpose.
Which brings me to living life to its fullest! Next week Lee and I are heading to central Oregon to visit our friends Paul and Linda. They have a lovely home on the banks of the Crooked River, with all sorts of wildlife. Otters, beavers, deer and, my favorite: DUCKS!
Fortunately Paul has a well stocked wine cellar that will allow us to sip fine wine while we enjoy the river, the critters and our amigos.
Every since November I have been bothered by a cough. Not a little polite or “clear your throat” kind of cough but a full-on loud cough. If I happen to have a fever, I get the enjoyment of coughing spasms. It has made it hard to hold a conversation, to paint and….to sip a glass of wine!
In November it was determined that one of my lung tumors might be impeding my airway, so we tried some low-dose radiation to shrink the offending tumor. Ahhhh. My cough was finally gone…for about a week. Then the thought was that there was likely some irritation to the lung lining due to the radiation. The solution was a limited treatment with steroids and they worked marvelously, if I kept them at 40mg. The problem with that is that steroids make one susceptible to infection so they had to wean me off them. The last thing I wanted was a lung infection resulting in pneumonia. Pneumonia could literally be my last thing.
Since I am currently not on treatment, and will soon be heading off on our first vacation in about a year, Dr. P is addressing my ever worsening cough with a big container of 40 mg prednisone to stifle that obnoxious cough. It will be so nice to not cough loudly all the time. To fend off infections he has given me three different drugs to take prophylactically. Woo Hoo, I haven’t used prophylactics since before I was married. This could be a wild vacation!
We are still waiting for news on the bio-markers from the biopsy of June 30 of my liver. Dr. M should have those results soon and then we can see what possibilities are presented by the data. But until then, I’m not coughing!
For today’s painting we have Bella, who resided in Oregon. She liked to hide in the bushes and ferns, but her big golden eyes and white chin, gave her away every time.
Our friend Jack Jiampetti took the above picture at sunset of the first storm of this year’s monsoon season. After the hottest June in 130 years, this is a major cause for celebration in these parts. The desert comes alive after these rains and the storms are great fun to watch as they are forming, followed by thunder and amazing lightning shows. We love the monsoon season.
For nearly two weeks I have been fighting fevers reminiscent of those days when I was undergoing treatment with the Enad experimental oncolytic virus. My normal temperature is in the 97 range. When it gets to 99 my cough really begins to increase in intensity and frequency. If I reach 100 I get chills and have coughing spasms. So we have been aggressively using Tylenol and Ibuprofen to fight it. Between the fever and the coughing, I have felt rather exhausted. In fact I pulled some muscles from the intensity of the coughing.
We assumed that I had an infection, but at our meeting on Monday, Dr M. felt it might be tumor fever generated by my liver tumors which have been growing. My left lung didn’t sound bad, but not quite right so he gave us a prescription for antibiotics just in case. After taking them for two days, my temps remain too high but the chills have gone and I feel a tad better. The primary reason for the appointment was to close out the clinical trial, but also to go over the recent blood biopsy and the biopsy of my liver. Unfortunately the data from the liver biopsy hadn’t arrived yet, but the blood biopsy did reveal some interesting changes from the blood biopsy taken in December. Dr. P, my primary oncologist, and Dr. M, my research oncologist, were residents together and have remained friends over the years. They recently discussed my case and the plan is to develop treatment based on the results of the biopsies.
We also met with my pulmonologist on Monday. He changed my lung medication for my cough and it seems to be more effective, but I’ve only used it for a day at this point in time.
This past week has seen a plethora of insurance bullshit including:
1. Banner, a large hospital chain based in Phoenix that purchased the University of Arizona medical facilities (including the cancer center), likes to charge a “facility fee” of $150 just because they want to, not for any services rendered. This is similar to the days when car dealers charged “additional dealer profit” or high end hotels who charge a “resort fee.” The net result is that my co-pay is $112.48 for a blood draw. In a trial there can be 10 draws a month. After hours of talking to my insurance and Banner to no avail, I am in process of appealing to Medicare. This is bullshit, I say.
2. Most of the best clinical trials in AZ are in Scottsdale at Honor Health, Virginia Piper Cancer Center, and Pinnacle Oncology. All three accepted my Cigna insurance. In fact I had signed up in March for a trial at Pinnacle, but changed to the trial at the U of A Cancer Center. Cigna didn’t like that they weren’t given sufficient written notice of the merger so they cancelled their contract. For me, that means my options for new clinical trials within AZ just shrank by about 80%. More bullshit.
3. Yesterday Lee drove an hour to see her doctor only to be told she had no coverage due to failure to pay. Well that’s odd since it is on auto pay. Upon research, when I set it up this January for the new amount I was off by 6 cents. My payment ended in a “2”, it should have been an “8.” This meant that each month was increasing in the underpaid amount. By July the amount of underpayment had reached an outrageous 42 cents. They are actually in process of terminating Lee’s insurance. Keep in mind there was no notice given to us, no warning at all. I was on the phone to them for an hour and Lee was also on the phone when she got home. Lee filed a grievance and we should hear back in a few days. Outrageous bullshit.
So among all this gloomy business of no known treatment on the horizon, no kitties in the house, and no health insurance for Lee, we do have some good news. We are looking forward to this weekend with a visit from Lee’s sister and family. They will arrive on Bastille Day and we have plenty of French wine and cheese in need of consumption. Laissez la fete commencer! That is my bullshit French for “let the party begin.”
Also, our neighbors John and Sandy just dropped a loaf of my favorite olive bread, fresh from the oven at Barrio Bread in Tucson. Mmmmmm. No bullshit, just seriously outstanding bread. Thank you, amigos.
Below is my latest column from the Green Valley News, which can also be ready online at http://www.gvnews.com/opinion/asbell-ignorance-not-bliss-with-cancer/article_750f785e-63f3-11e7-af80-1b3ece239ab8.html
After a valiant struggle with lymphoma, Cotty was put to rest this morning. He left behind a gaping hole in the Asbell family, but his suffering had to end. As with many cancer victims, he left this world way too early.
With his big softball head, huge golden eyes and luscious plush fur he was, indeed, a very handsome boy. Simply stroking his fur and hearing his loud purr helped Lee and I cope with our own struggles.
Cotty was always there for us, always greeting us when we came home. Knowing that it was difficult for me to bend down, he would jump on the end table for a proper “welcome home” by allowing me to provide a few strokes or a head scratch before jumping back down. After helping Lee get up in the morning by sitting on her head at 5:00 am, he would greet me when I stumbled out of the bedroom an hour later. He would assist Lee with putting away groceries and supervise her housework. He always helped me get dressed for the day. He loved computer work was was always ready to lend a paw, leg, or tail when we were on the computer. Cotty was a lovable goofball in many other ways and brought us tremendous joy. He was a key asset in our fight with my disease.