Jimmy Keeps His Nose!

You may recall that three weeks ago I shared the news that several of my chemo drugs had nearly destroyed the mucous lining of my nose. If left unchecked it would result in a perforated septum which would cause the cartilage to dry out leading to the collapse of my nose. I immediately discontinued using the offending chemo drugs and began a four times a day topical treatment. However, the last ten days or so I noticed a burning sensation in my left nostril. Was this the beginning of a perforation? The other day we saw the ENT doc and he was very pleased with my progress and doesn’t need to see me for six weeks. The burning sensation was just some minor irritation and nothing to worry about.  Jimmy gets to keep his nose and doesn’t have to go plastic surgeon shopping!!  Lee and I decided to celebrate and dined at a James Beard award winning restaurant, Pizzeria Bianco.  Oh…was it gooooood.

Jimmy is excited! He gets great Italian food and gets to keep his nose, and what a fine nose it is.

It’s been nearly a month since I have had any chemo and I feel great. Can’t have that, so it is time for more chemo. Today I started my TAS-102 (clinical trial name), the brand name is Lonsurf.  This drug has only been available for 9 months, so no one really knows how it will affect me or if it will kill the tumors. There are educated guesses for sure, but guesses nonetheless. With TAS-102 the guesses are less educated since there is less data from which to make their guess. There are the common chemo side effects, but the big one is the assault on the immune system. Risk of infections are high because it impacts the production of white blood cells.  Transfusions, as well as excessive bleeding, are another common side effect since TAS-102 often has a drastically adverse effect on the platelet count. I have alerted my awesome immune system of the impending attack.  As of yesterday my white blood cell count was a solid 8,100 and my platelet count was a battle ready 497. Interestingly my CEA cancer marker dropped again down to a NORMAL level with no chemo for over three weeks.  Hmmmmm….maybe I should just stop this chemo nonsense and see what happens?  Of course the CEA marker is not a definitive indicator, just like a PSA for prostate cancer is not a reliable indicator.  It’s all guesses, I guess I’ll just try TAS and see.  At least I’ll provide some data for future guessers to use.
One of my artist friends, Mike Spanopoulos, suggested that the Tasmanian Devil we posted be Jimmyizied. Good idea Mike!  Below is the Jimmy TAS. Instead of brown, he is a more powerful green and yellow combination infused with Oregon Duck magic.  Instead of a regular dust trail, it is Zinfandel dust.  He holds a bottle of “Die Cancer” poison to get the job done and a bottle of “Jimmy’s Good Stuff” for nutrition…he must stay strong for the fight!

Go get ’em TAZ, take no prisoners!

And now for a different topic. I sincerely apologize for my last post if I alarmed or distressed anyone by using the “H” word. The “H” word being “hospice.” As Ricky Ricardo would say, “Let me splain.”  From the beginning of this blog I vowed not to chase rainbows and to keep it real. Hospice has been part of the plan from the beginning. Studies show that the quality of life is better and the QUANTITY of life is longer if hospice is begun sooner rather than later. My goal is to live life to its fullest as long as I can. The plan is to begin hospice when there is no longer a good option for treatment, by that I mean treatment that will do more good than harm. No chemo will cure me, at best it is a way to buy time. Bad chemo can kill me before the cancer can, so prudent choices are in order.

I have not given up. I am hopeful that Lonsurf will work and extend my life. If it’s not working, then I can extend my life by discontinuing the poison and move onto hospice care.  I can change my mind and go off hospice if a better offer comes along, like a good clinical trial.

In the meantime we will continue to look for immunotherapy trials. We have recently come across several new and exciting developments in immunotherapy for colon cancer. We are hopeful for  opportunities before the end of the year. 

My greatest fear, dear reader, is that my legions of supporters may think of me as a dead man walking and avoid me because they don’t know what to say, or feel that I am too ill to have any fun. Not true! All comments, questions, thoughts and feelings are welcome. I have no secrets and both Lee and I are doing okay. Jimmy is still the same goofy Jimmy. 

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24 thoughts on “Jimmy Keeps His Nose!

    1. Love the attitude and the newsletters! Hang in there. You too Lee. Appreciate the situation. We are doing well. L has had 3 chemos with 3 to go. So far, so good. Except no evening cocktail or wine. Should be free in mid August.
      Stay in touch. C and L

      Liked by 1 person

  1. That Tas is the El Mucho Hombre and a wonderful painting. Glad to hear the report & that you have a plan of living a quality life to the fullest. That is not the half empty and certainly not half full , but the incredible Goofy Jimmy A. that we love & adore. The Dust Devil just blew some of that Zinfandel Dust over this way. Mucho Gracious Lee and
    Jimmy A. for being you.

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  2. Good luck with the new regimen, jim. We will hopefully be home from our marathon vacation tomorrow night and hope to see you and lee soon!

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  3. I would have gotten a fright from the H word if lee hadn’t sent me a good article to read months ago. it doesn’t have the same dejection my old concept of hospice carried. lots of good news in this blog will be uplifting for all your buddies. who customized taz? you or lee or mike? love it. I want to come for a visit when convenient during monsoon season. peculiar but I want to see the downpour. want to see the rain gauge overflow out there in the desert. ๐Ÿ™‚

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  4. You continue to rock it, jim, with blood scores to die for–and a CEA number that is the dream of any cancer patient or even any smoker. You’ve got a lot to celebrate–and I toast your good devils.

    Good luck with the Lonsurf. Tomorrow is Y90 day for me. For ten days I won’t need a night light. After that, I might be “surfing” with you, so take notes.

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      1. I did, Jim. Very exciting. My oncologist is attending the conference now in Chicago. I hope it turns him on as much as it does me. His response that these are not ready for use yet are met with my observation that 28 are already using it. I guess somewhere down the line I may have to seek out a clinical trial.

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  5. It is such a nice nose!! Am glad you can keep it for good looks but mostly for smellin’ the “REDS”! Fingers crossed for the TAZ treatment. Let that whirl wind begin. Thinking of you daily.

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  6. I guess I wasn’t the only one that didn’t know what to say after your last post, but glad you’re able to speak frankly about the good, bad and scary. Hang in there, and hopefully some immunotherapy will come your way. Offer your best wine to the scientists! ๐Ÿ™‚

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  7. Hi Jim and Lee,

    Loved this latest blog, Jim, especially your painting of Jimmy TAS. Hopefully the TAS-102 Lonsurf will do its job and give you many more good years. Good news about the nose!

    I leave tomorrow for WA state and will be back sometime in late August. I expect to hear then that you are doing better and better. Hope all’s going well with you as well, Lee.

    See you in September.

    Kathy

    ________________________________

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  8. Jimmy, as you say, you continue to demonstrate the importance of humor while fighting tuff situations. If Marie can get permission to fly, we would like to drop in around the first week of August when the weather gets a little warmer!

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    1. I heard you Italians were smart. “Let’s go to desert at the peak of the heat season!” Brilliant as always! Actually we like August, we love the monsoons and it would be great to see you. Come on down!

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