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.
It has been a hot and stressful week here at Hacienda Del Asbell. When I was in Tucson getting my CT scan, the outside thermometer in my car read 118. Tucson set a record for three consecutive days of 115 degrees or above, Tuesday thru Thursday. Even as I am writing this blog it is 110 here in cool Green Valley. Oh how I long for a day when the high temperature stops at 100!
A lot of cancer patients find getting scans very stressful. There is even a word for that: scanxiety. Fortunately I don’t suffer from scanxiety. But I don’t look forward to them either, especially when I have to drive two hours in that heat. With this most recent scan I assumed it would show tumor growth, so when I got the results on Friday, it was either going to be as expected or a happy surprise. Not a lot of stress there.
My greatest stress this week came Wednesday and Thursday concerning my cancer buddy and master of our house, Cotty, who is on kitty hospice with lymphoma. Cotty had an Adverse Medical Event. When he was diagnosed three months ago, he was put on medication that nurse Lee administers twice each day. The doctor told us that the medication could work or not, he could last a few days or a few months. Wednesday night and Thursday morning Cotty had massive bloody diarrhea and vomitting. Both Lee and I thought this was it and with heavy hearts we scheduled an appointment with the intention of putting him to sleep. Upon examination, the doctor felt that this could be an isolated incident. She gave him several injections with additional medications for nurse Lee to administer. The doctor said we should know in a couple of days. Although Cotty has shown some improvement he is very lethargic, with very little activity. It is obvious he does not feel well. I am very worried that I may soon lose my very best buddy. This comes just two months after losing our beautiful Miss Bubble.
Friday afternoon we met with Dr. M at the Cancer Center. Unfortunately, the results were not a surprise. I have steady disease progression. My cancer is not exploding, but it is growing. There were 24 new tiny tumors in my lungs that were too small to see on CT previously. He offered me the option to continue on the trial or withdraw. After a discussion we agreed that withdrawing was best. I came prepared for this news with the details on trials currently available in Arizona for his input. After looking them over, he felt that none of them were right for me. He said I should wait, as new trials pop up all the time. In the meantime he wants to biopsy the tumor to see how the oncolytic virus changed the tumor makeup with the purpose of identifying possible new targets. So that’s what we are doing. I am still officially on the trial until a blood draw on July 5. This is not what I hoped for when I started the trial, but at least I had the opportunity. The information I generated with this study will help PsiOxus in future studies and with future patients in treatment.
In about two weeks I will meet with my pulmonologist to deal with the agitating and irritating cough. But the consolation prize I received yesterday from Dr. M was a prescription for some steroids (taboo with an immunotherapy trial) that will soothe the irritation in my right lower lung that is causing the cough. It is a temporary solution, but I already am coughing less! 🎉🎉🎉
Despite my coughing I have been able to paint. Below is my painting of Panzer who loved to run at top speed with her ears and tongue flapping in the breeze. Panzer lived in Corvallis, Oregon which is Oregon State Beaver country. However, I have a reliable source who informed me she was an Oregon Duck fan. Ducks are much more fun to chase than beavers. Go Ducks!
Happy Father’s Day to all you fathers out there. Below is my favorite photo of my stepfather, the man who raised me. He is at the wheel of his 1951 Riley, a car from England noted for its style, sportiness, and unreliability. It was my dad’s second love, my mom being his first.
Things are pretty much status quo here in the desert. My pulmonologist is gone this month, I have a followup appointment from my mid-May bronchoscopy with him on July 10. Hopefully he will have some tricks to curb my annoying cough, he was certain he would, but needed to wait for some cultures that take over a month. I had my third Opdivo infusion on Tuesday and things went very smoothly. Other than that I’m not having any bad side effects. We still have no idea as to whether this drug combo is actually working or not. That will change next week. I have a CT scan on Monday and next Friday we have a meeting with Dr. M to review the scan.
My gut feeling is that the trial is not working for me. The vast majority of Phase I trails fail. Of course, I understand that my “gut feeling” is nothing more than my anxiety mixed with impatience. At my monthly meeting with my regular oncologist Dr. P, I shared my concerns and asked his opinion if this trial fails should I find another trial? He was unequivocal that I should pursue another trial, as I am in good shape. In the past we have discussed all options in my treatment. He is a proponent that early hospice will extend life rather than fighting to the end, so I value his enthusiastic opinion I should do another trial if this one isn’t working.
My plan is to select several trials and, should Dr. M determine that this trial is not working, get his input on these other trials. There are currently a whopping 765 trials featuring immunotherapy, quite a few to sort through. Some of these trials will have over 100 trial locations scattered all over the globe, while others will only have a few locations. My current trial has only 5 locations, all in the U.S.
So let the sorting begin. If I restrict the trials only to Arizona there are 30. However, many trials will not accept a patient who has previously been treated with immunotherapy, and that be me. Applying that filter, the number of available trials is only 12, one in Tucson and the rest in the Phoenix area.
Hmmm, perhaps I’m thinking too small. Perhaps I should search globally. There are a lot of trials in Barcelona. I’ve never been there. We would have to rent a place near the trial location for six months. We would also have to budget in trips to all the various wine regions, maybe include France and Italy. It would be expensive. I suggested a “Go Fund Me” to Lee. She was less than enthusiastic. Oh well, Scottsdale is nice.
I am looking forward to next Friday. Jimmy no like limbo land. It will be good to move forward. It will also be good to celebrate our 18th wedding anniversary. It was actually May 23rd, but that was an all day infusion day for us. So we have our meeting with Dr. M late Friday afternoon, then we immediately depart to Hacienda Del Sol, a resort nestled up against the Catalina moutain range for a night of luxury.
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!
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.
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!
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!
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.
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!
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!