Jimmy Has A New Hat!

Yesterday I got a surprise package in the mail from my friend Harmony. Oh boy! Inside the box was an Oregon Duck cowboy hat.  Yippie-Ki-Yay I say! It just so happened that I had a presentation of my book and CAPE philosophy scheduled for this morning and the new hat was a fantastic addition to my presentation outfit. Perfect timing Harmony, thank you!

duck hat

The presentation was for the Forum Club of Green Valley. They have a speaker every Wednesday morning. The club president had attended one of my earlier talks and he thought I would be an ideal speaker for his group. This made me feel good. While we are on the subject of feeling good about myself, my insurance company assigns case mangers to their cancer patients. In a conversation with my case manager she mentioned that I certainly seem to know a lot more about cancer and treatment than most of her clients. I replied that I had written a book about how to deal with crappy diseases. She purchased it and told me how wonderful it was, and that she and other case managers are now using my CAPE philosophy with some of their clients. This made my day. My goal is to help people and this extends my reach beyond what I can personally do. It also makes me feel good about my brilliant writing skills. In addition, my book has been selected to be added to the Arizona Talking Books Library. Now my book will be available free of charge to those who do not have the ability to read.

Fortunately, my new hat is adjustable should my head swell too much.

Well, you’re probably wondering how my treatment is going, and so are we. We have no idea if it is working, but I’m feeling fine. My last infusion of Opdivo was boring…I mean 12 hours of boredom. But that is a good thing. Unlike the previous infusions, nothing exciting happened (medical excitement is usually bad) until the very end. The vampire was making the last blood draw of the day and he had a student with him.  I think he must had been showing him what NOT to do and blew the vein leaving me with a 3″x 2″ bruise. He then switched arms and showed the student the right way to do it. I had no “day after” side effects from the Opdivo, although I still have my annoying cough which makes it difficult to sneak up on people.

I will have another set of CT scans in late June so we should know more then.

My most recent infusion was on our 18th wedding anniversary. It wasn’t a particularly romantic day this time, but a day without any adverse health crises, and a day that will hopefully enable us to enjoy our 19th wedding anniversary. Our friends Ralph and Mary thought, rightfully so, that I’d be too worn out to take my bride to dinner and my bride would be too pooped to cook, so they brought us a wonderful anniversary dinner to our home, complete with flowers and a card.

mary ralph

The balance of this week and all of next week I am a free man with no doctor appointments. My back feels better which means I can catch up on my painting. Below is my latest effort. Tillie is a Nova Scotia Duck Tolling Retriever puppy. She has her very first duck and, based on that determined look in her eyes, it’s hers to keep!

tillie

This was a very hard painting for me to do because it represents a dawg having its way with a duck and brings back nightmares of the last game my Oregon Ducks played against the dirty dawgs of Washington. They destroyed us 70-29. Oh the horror!

 

 

Flying Blind

I have been grounded on my clinical trial since May 1st due to a “Significant Adverse Event” from my last infusion of the oncolytic virus. That infusion resulted in me spending a lovely overnight in the ER at Banner University Hospital. The infusion reaction combined with my chronic cough caused Dr. M to call a “time out” for Jimmy. The break meant I had to miss my second round of the immunotherapy drug, Opdivo, which is not good.

During the time out we also received my first CT scans since I started the trial. These showed about a 15% increase in tumor size with some new baby tumors in my lungs. Bad news again. I also saw a pulmonologist and had a bronchoscopy on Wednesday. The bronchoscopy reduced my cough, but I will probably always have some degree of chronic cough. The coughing is most likely a result of chemo treatment that caused multiple lung infections. Ah chemo, the gift that keeps on giving.

So these past two weeks we had lots of time to ponder. Would they drop me from the trial? If there is too much disease progression that’s what usually happens. Would they drop me from the trial because of concerns about my lungs? Opdivo can cause lung damage. Was the condition of my lungs too risky to remain on the trial?

Fortunately for us, our neighbors Barb and Joe, brought us a Maeki-neko, a “Beckoning Cat,” back from their cruise around the world. This Beckoning Cat hails from Japan and brings good fortune. It seems to be working for all of us, including our fuzzy feline Cotty who is battling lymphoma. Today, we finally got some good news. FullSizeRender (11)

Lee and I had a meeting with Dr. M this morning and the trial is a GO again. My next Opdivo infusion is scheduled for Tuesday, which just happens to be our wedding anniversary. Pretty romantic, don’t ya think? I am going to pull out all the stops and buy Lee a latte from the cafe and a “cancer sucks” T-shirt from the cancer center gift shop.

We still don’t know if there is actual disease progression. Dr. M thinks it is pseudo disease progression. This occurs when the immune system is attacking the tumors making them look larger on CT than they actually are. Only time will tell. We don’t know if the Opdivo will further inhibit my lung  function. Only time will tell. We haven’t received the results of the last lung biopsy which we hope will reveal how the oncolytic virus affected it. I do know that other than a cough, I feel great.

There is a lot I don’t know at the moment. I’m flying blind…..but at least I’m flying!

Green Valley News Column May 14

Happy Mother’s Day to all of you readers who qualify! I hope you had a wonderful day.

Below is my column that appeared in the Green Valley News today. You can also read it on line, gvnews.com. At the end the column I mention that I will see Dr. M, the clinical director, tomorrow with the hope of getting some answers to my questions and determine my course of action. However, since I wrote the column a bronchoscopy has been scheduled for this Wednesday. Dr. K will run his little camera down my lungs and have a looksee to see what is going on in there. He will also be prepared to freeze, fry or stent in order free up my airway. Oh how I long for some deep breathing! As a result of the new procedure Dr. M changed my appointment until Friday and we will review all the scans, biopsy and bronchoscopy results.

I have finally had more time lately to get back to my palette and brushes. Below is Rusty, a fun loving Havanese with a strong gaze. This was a custom pet portrait that I donated to the Relay For Life auction in April. Rusty came over with his owner to pick up the painting over the weekend. He sniffed it, then licked it, then licked me! An obvious approval!FullSizeRender

GVN column May 14 2017

 

Wondering

Lee and I have just arrived home from the hospital after my third lung biopsy in about the last four months. I’m getting pretty good at this lung biopsy business. Maybe I should write a “how to” book, Lung Biopsies for Dummies.

That last infusion of the oncolytic virus Enad certainly kicked my butt and I didn’t fully recover until Sunday. You will recall it was determined that I should have no further infusions of Enad since I had reached my MTD. Question: I wonder how much difference there is between the Maximum Tolerated Dose vs. the Minimum Terminal Dose? Just wondering. But it does not appear there was any permanent damage to little Jimmy. The worst symptom after the firestorm on infusion day was the swelling of my lower extremities, especially my polio-impacted left foot. Since I have very poor circulation in my left leg and foot, I am susceptible to edema. I found myself icing down and massaging my fat, puffy left foot and lower leg multiple times a day. Getting my left leg out of my brace was like removing a sausage from its casing. But by Sunday it was much better and I was ready to do battle again.

Monday I had my normal “day before infusion” blood draw and physical with Dr. M. This is typically a routine and uneventful few hours, so Lee elected to stay home to visit with the Air Conditioning man. I’m glad she did, it was triple digits today! However, this particular meeting was anything but routine. Evidently Dr. M had been cogitating about my nagging cough. He was now deviating from his prior pronouncement of last Wednesday when he informed us that we would go forward on the trial as scheduled with an Opdivo infusion on May 2. Now he wanted to hold off Opdivo until he had a better understanding of that cough of mine. At my ER visit they took some X-rays of my lungs, and he saw something he found suspicious. A valid concern since one of the more serious side effects of Opdivo are lung issues. He arranged for me to have a CT scan of my lungs as soon as I left his office and, after looking at the scan, called me later that afternoon with reaffirmed concerns. I wondered if Dr. M was gonna drop me from the trial. But he is not a lung expert so he had me see the head pulmonologist at the Cancer Center on Thursday.

Dr. K is the program director of Interventional Pulmonary at the University of Arizona School of Medicine. His major flaw is that he graduated from the Ohio State University. I have horrible memories of the NCAA football championship game a couple of years ago when his Buckeyes threw my cherished Ducks around the stadium like they were, well, like they were toy ducks! But he seemed like a nice guy and after reviewing the CT scan and examining me, he was confident that he can help me with my cough. He gave me prescriptions for a more powerful inhaler and some magic nasal spray. In addition he will perform a bronchoscopy to see if anything is blocking or collapsing my airway. If there is blockage he will remove it, if there is outside pressure he can put in a stent to keep the air flowing. He also felt that I should be able to continue on the trial, but that is not his call. While in his office, we asked if he could send us the CT scan report, which details tumor status. Much to our dismay there was growth in the tumors along with some new “baby” tumors since my last scan on March 1. We are now wondering if Dr. M (or the trial sponsor) will drop us because of disease progression. On Monday I have another CT scan of my abdomen and pelvis to see what is going on in the liver and other gut areas. Cancer can pop up anywhere at any time for a Stage IV Colon Cancer patient.

Although there has been significant tumor growth since March 1 in my lungs, my first and only dose of Opdivo was just three weeks ago. When did the growth occur? I wonder if maybe the growth was before Opdivo? There is also the phenomenon of “pseudo-progression” when dealing with immunotherapy. I wonder if it is a case of pseudo-progression? Sometimes it looks like progression on a CT scan, but it isn’t, and may precede a good and prolonged positive response. Isn’t cancer fun? No one knows for sure most of the time. We are not the only people wondering. So are the oncologists.

In any case, this will all sort itself out soon enough. I have a lot of wondering goin’ on, but I have no wondering about what I will be wearing and drinking tonight. I’m wearing my favorite new wine shirt (thanks Carl and Gerrie) and drinking arguably one of the finest Chardonnays in the world (double thanks, Max).

Live Life to its Fullest!!!FullSizeRender (14)