What to do, what to do?

If my life wasn’t on the line, this could be a fun game. Perhaps I will try to keep that thought in my mind as I roll the dice with each medical decision I make. That’s the best idea I’ve had today, although my selection of chicken enchiladas for lunch was a close second.

Throughout the last 14 months of my chemo adventure, my immune system as been “immune” to the assault on my white cell blood count, neutrophils and platelet count. I have been very pleased with this situation. But the game is a little different with my current chemo agent, Lonsurf. My crack research team, consisting of Little Lee and Cotty the cat, discovered from reading Lonsurf’s trial data that those patients that exhibited severe neutropenia got the best results in extension of life. Neutropenia is low white cell and neutrophil count. Just as with the levels of cancer, there are four stages of neutropenia. Stage IV is the worst with regard to susceptibility to life-threatening infections, but stage IV neutropenia is the best condition for effectiveness of Lonsurf’s ability to extend life. There are shots (Zarxio for the curious) they give to patients with stage IV neutropenia to protect against infections and yes, I will start those tomorrow if the stupid insurance company gets off their ass and approves it in time.

So…before Lonsurf I had no neutropenia. Once I began Lonsurf I developed a low-level stage II neutropenia and it stayed that way for two months, no movement at all in my bi-weekly blood tests. So as I approached my PET scan and visit with Dr. P today, Lee and I were anticipating less than great news. We were hoping for stable disease with little or no growth in the tumors. What we got was robust growth and activity in most tumors with shrinkage in a few. But here is the kicker. Six days ago my blood test showed stage II neutropenia. The draw I took yesterday showed level IV neutropenia. Keep in mind that there hasn’t been any chemo for two weeks and the low point of the cycle should have been last week’s blood test. I don’t get it.  The good news is that there are no new areas of cancer activity. It is still isolated to lungs and liver. So things could be worse, but the big picture remains the same. For those who may be new to this blog, my estimated life span was two years or less from diagnosis and I am at sixteen months.  Lonsurf could potentially give me another five or six months.  Time is a precious commodity as immunotherapy ( a potential cure) is still in the trial stage for colon cancer.

Lonsurf is a new drug, out for less than a year, and it takes time for the medical machine to figure out how it really works on regular folks as well as special people like me. What a fun game! Now that I have had disease progression, the first instinct is that Lonsurf is not working. But I’m thinking maybe that’s because I only had stage II neutropenia. Now that I have stage IV neutropenia are we are going to get some action out of the drug? Dr. P thinks that theory might be right if the disease was stable over the past two months of treatment, but not likely in this case since the tumors have been thriving during treatment. But he doesn’t know because there is no data that supports either theory. So, let’s roll the dice and see what happens. From my view, I’m playing with the house money at this point.

The current plan is to continue Lonsurf for a while. Instead of a monthly CEA (cancer marker) blood draw, have a weekly CEA with a CT scan in a month. Meanwhile he is also referring me to the University of Arizona Cancer Center to see if there are any suitable clinical trials. Other than clinical trials, there are no treatments that make sense for my particular cancer situation. Who knows, maybe this visit to the U of A specialists has the potential to turning me into an Arizona Wildcat fan!!!

So not a lot of good medical news today, but I do feel and look good. I’m sleeping well, eating well and, of course,  drinking very well 🍷. Lee and I are painting up a storm, having fun with friends and looking forward to visits from friends and family from afar.  In other words, we are living life to the fullest. Thank you all for your support, it has and continues to make a world of difference to Lee and I.

And now, please meet Gus.

“What a Nice Normal Nose”

You may recall that about three months ago I discovered that my first chemo regimen (5-FU & Avastin) was destroying the mucous lining of my nose. I was very close to having a destroyed nose, the type normally reserved for those heavy “blow” users. At that time, after just a peek up my nostrils, the doctor proclaimed “we have a serious problem.” Today, after three months of treatment, he declared “what a nice normal nose.”  So Jimmy has one less problem to deal with and an excuse to open an expensive bottle of wine tonight in celebration, a double dip day for me!
Yesterday I completed my second round of Lonsurf (TAS-102).  My red Aunt Jemima recipe  box will get a rest for a couple of weeks before I replace the two vials of the vile poison for a third round. This round went just like the first round, very minimal side effects. For having stage IV cancer, I feel pretty damn good. In two weeks, after another PET scan, we will meet with Dr. P to evauluate its effectiveness.

Yesterday was also the world premier of the “Living Well With Terminal Illness and Other Crappy Diseases” power point presentation at the Quail Creek clubhouse. To make this premier special and build demand before we take it to the mass market, we decided to limit the audience to under 20 people. Fortunately this turned out to be a very easy task. I enjoyed giving the presentation and the audience seem to have a good time as well. The wine seemed to help in that endeavor.  Just kidding about the wine. The president of Polio Epic, a polio survivors support group, drove down from Tucson for my presentation and invited me to give the presentation in Tucson.  So things are progressing in my goal of sharing my philosophy of dealing with life’s curves. 

Thanks to all those who came out to support my endeavor and double thanks to those who gave feedback to help make the presentation better next time. 

The crowd buzzes with excitement in anticipation of the world premier!

In between presentations of my book, I continue to enjoy putting pets on canvas.  Below are my latest.

Best Buddies!
Stewie likes his red collar.

July 4th Part II

It seems that WordPress did not post my entire recent posting. They failed to post my recent paintings.  Are they censoring art work?  Perhaps they are afraid of flying cats.  In any case I’ll give it another try and see if I can sneak this past the censors.

Here are my latest custom pet portraits for your enjoyment or dismay, as the case may be.

Although Palomito left this earth in May, he is still floating among the stars over the desert with his angel wings, fluffy tail and pink nose.

Did you notice that Palomito has green eyes?

The two doggies below, Bond and Lexi, live in the Pacific NW and like to herd sheep in the rain.  But mostly they just love to be spoiled. 

Happy 4th of July!

This is my second July 4th since my stage IV cancer diagnosis.  Hooray, anyone want to join me for a third?   These days each anniversary of a holiday is cause for celebration.  Funny how your perspective can change. The significance of my next birthday in October is not that I’ll be 69. The cause for celebration is that it will be my second birthday since diagnosis, which is fitting since Lee claims that I often act like a two year old.  

Although my war against cancer is still raging, there is no big news from the battlefront.  We met with my oncologist a few days ago and I just started my second round of Lonsurf (TAS-102).  We won’t know how effective Lonsurf is until the next PET scan late this month.  However there’s good news, I am happy to announce that I feel better* than any time since I started Chemo.  I survived the first round of Lonsurf with only very minor side effects.  Lonsurf is known for assaulting the immune system, often resulting in dangerously low white blood cell and platelet counts, leaving the patient vulnerable to severe infections. Although I did experience drops in both white cell and platelet count, the drops were relatively minor.  My platelet count is still within the normal range.  Although my white cell count is slightly below normal, my neutrophils are still normal, so infections are not a big concern.  My oncolgist said all of my blood work has been so consistently good over the last 16 months of treatment, regardless of what they throw at me, that I can forgo go the weekly blood draw and switch to a monthly draw if I wish. I decided that I’ll meet him halfway and get a blood draw every other week. I really like to know how my body is doing and (don’t tell Lee) but the vampire that draws my blood is kinda cute.  *Cancer/chemo wise I feel great.  But my right knee, hamstring and hip have been quite troublesome as of late.  Hopefully things will settle down in time for the Sumer Olympics as I plan to compete in the 200 meter high hurdles.  

I am happy to report that sales of my book, Live Well With Terminal Illness and Other Crappy Diseases, are off to a good start.  If you haven’t yet grabbed yourself a virtual or paperback version from Amazon, “whatta  matter wif you?” If you have purchased from Amazon, I’d appreciate a review on their site.  My goal with this book is to help as many people as possible to learn to be able to enjoy life despite facing dire straits.  By the way, “Money For Nothing,” is a favorite song of mine. Ah, but I regress….  Now that I have the book in circulation, I want to speak to groups.  I gave a brief talk to our art club and I am now working with a local church and cancer support group on scheduling a talk.  I am hopeful I can add speaking engagements to my resume along with artist and author.  My goal is to be interviewed by Stephen Cobert.  

Now that I finished the book, I can get back to painting.  Below are my four latest custom pet portraits.

Although Palimito left this earth in May, he is still floating over the desert with his angel wings, fluffy tail and pink nose

Palomito has green eyes, in case you didnt notice.

The following doggies, Bond and Lexi,  live in the Pacific NW and love to herd sheep in the rain.  But mostly they just like to be spoiled!