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.

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35 thoughts on “What to do, what to do?

  1. Gus proves one thing for sure! You are not only living life to the fullest & enjoying great vino, but you are really painting great Pet Portrait’s. Gus is super on so many levels. The eyes have it, the neckerchief perfect & the texture so pet able! Your enjoyment & your Zest have made us better understand how to Live Well With Terminal Illness. When we say Thank You & we Love you Jimmy A it is more than support. Jimmy A & Lee you are our Heartline.

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  2. I am seeing a lot of hope in the statement “there is no data that supports either theory” and am hoping/betting there will be “some action” from the drug. Sort of like some football games for the Ducks, you have to wait for the action and then they win. Go Ducks! (I really like Gus). Marj

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  3. Damn it!!! We were SO hoping for different news, but you don’t follow the normal protocol and haven’t from the beginning, so here’s to doing what you have been doing so well.

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  4. Well damn- your paintings are getting better each time you produce one of them!!!!🤗 Am gonna have to dig out a picture of my of our old little shih’s for a group painting. As for other news well the road runner really messed up your neuts! So another option on the table. What to do? Go after those little bastards!!!!! Then enjoy a nice red. I came thru surg just fine. Only bad thing is no wine tonight. Talk soon.

    Liked by 1 person

    1. WHAT….no wine tonight!?! Is there no justice? Great news about your surgery, but now we are going to have to be more careful when we are talking about you behind your back. 😄

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    1. Thank you Kathy. We both have the same goal, to help people live life to the fullest even in the face of terminal illness. Anything you can do to help me reach folks with my CAPE message will be appreciated. Not only am I a brilliant author and painter, I am also a pretty good public speaker. 😄

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  5. where is the U of A? phoenix? would the clinical trials have to be at that center or would you possibly go elsewhere in the country? so much to know and so much to think about. Lee, of course, has had almost 20 years experience keeping up with all the cancer news. see you soon, dear family.

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    1. U of A is just up the road in Tucson. But there are other possibilities in other cities, time will tell. Looking forward to looking at the rain gage with you 😄

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  6. Gus is wonderful…keep painting and don’t go too far with the U of Arizona since once a Duck fan always a Duck! You and I are both on borrowed time and I also know what makes me happy I love this house because it feels like a stationary houseboat and I am happiest by the water in a hot tub or exercising in the QC pool on a warm day. High of 72 since I have been here and tonight we have gale winds so no fishing boats today or tomorrow. Lily makes my life complete and I am buying lottery tickets so I can buy a van or tiny camper so lily and I can go on day or overnight trips since I need a nap every 4 hours…neve r without a dream! Thursday I will spend a few more hours filing a appeal with the VA trying to get him care and attendance that he needs and should get…VA rules have corrected in last 6 months. He won’t wear Depends so lots of furniture and floor clean up and too much for me or occasional caregiver so basically he is unhappy and just taking up space. Lily and I love our daily walks along the boats or sand du nes thereforeI am so blessed with this cool weather but I keep her on leash because she would waddle up a huge sand dunes and then expect me to carry her down Don’t waste a day and I vow to only drink my favorite champagne or sparkling wine using China and crystal, treat ourselves well Carolyn

    Sent from my iPad

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    1. The Oregon coast is a beautiful place. 72 degrees for a high on a sunny day is wonderful. I sent you 20 flyers and my book signed by skinny jimmy and a duck. Give Lilly a tummy rub for us and a head scratchy too!

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  7. Jim, Hoping that bad news turns into positive action that university has some ideas. We are beside you as you enjoy each and every day. See you Friday and your friends.hugs,me

    Sent from my iPad

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  8. Life is so full of ups & downs & you only make it more open for us to realize how blessed we are everyday to see the sun rise & set & to be able to wave to our neighbors & friends. Along with your improved painting ability we know the gods are smiling.

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  9. Hi Jim
    I hope things go BETTER for you at the U of A Cancer Center. You and Lee are in my prayers. Please don’t tell anyone at U of A though that you’re an OREGON DUCKS FAN. Smiley face.

    Liked by 1 person

  10. Hi Jim,
    You don’t just send posts; you send lessons. For me it’s what a goofy damn unpredictable colon cancer is like. My sense from reading this let lessons and the few before, is that you still have some resilience evident in your blood tests and you have years of wait time for immunology trials–which are coming hot on your heels. I know that the Seattle Cancer Care Alliance is hot after colon cancer. They have beaucoup bucks and really talented researchers. They are my resource if and when my options begin to diminish. As you know I have had good luck with Y90 treatment (embolization) with chemo-free weeks yielding lower CEAs.

    My message to you is the same as always. You totally, totally rock. Hang in there!
    John

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    1. It is a bit discouraging, even though I know this is what colon cancer does. So I will continue to fight while exploring options and I will not lose focus on enjoying life.

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  11. Hi Jim,

    Your words speak volumes, your positive attitude is amazing and your strength in such hard times is something to behold and admire. You are still my hero!

    Gus looks like a very charming, well behaved companion. You did well my friend.

    Rex

    Liked by 1 person

  12. Hi Jim, I just checked with my hubby’s oncologist for Lonsurf. It is not yet available in Singapore. I am so thankful to have your valuable information for the treatment that you are having now. Also happy to know that you are drinking well!! Stay cheer!!

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  13. Gus is adorable! I’m glad you are feeling well while your medical updates are not always encouraging. I wish immunotherapy was available for you now. Do your doctors have you taking a good probiotic to help boost your immune system? Stay positive, enjoy your life. I love your posts, and loved your book!

    Liked by 1 person

    1. My immune system is very strong. They gave me a shot of Zarxio and my neutrophils (the white blood cells that fight infection) went from 0.3 to 4.8 in a day. Normal range is about 2 to 9. They gave me a second shot before the results from the first shot came back. So I’m guessing I’m high normal now and taking the Lonsurf chemo. Normally they have to give Zarxio injections 3 to 5 consecutive days to recover. I just hope the chemo works now, it hadn’t been working the last two months. But at least I feel great.

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  14. Hi Jim and Lee – thank you for this update. While it is not the best of news, I do hope the new regimen brings positive results. I am heartened to know that you are sleeping, eating and, of course, drinking (only good wine) well. Your most recent painting has to be my favorite – love the way you painted the eyes of this pretty doggie! Please know that you remain at the top of my list of prayers everyday for healing, well-being and continued good cheer and positive outcomes. Many blessings, Lynn

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  15. You and Lee have our hearts…. and we are encouraged by your plan to “roll the dice” based on your assessment of the latest Neurtropenia numbers. From the looks of it, it seems that Gus thinks it’s a good idea too.

    You were looking great the last time we saw you…so something good is going on. AND “No new cancers”!
    AZCC should definitely be worth it. Their gift shop may be a possibility for marketing your book as well!!!

    Aloha nui loa~ Sandy and John

    Liked by 1 person

    1. I agree AZCC would be a good outlet for my book. I haven’t heard from them yet. So we shall see. But I do feel fine After just a single shot my neutrophils jumped from 0.3 to 4.8. Back on Lonsurf, hope it gets busy.

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