Sunny with snow on the ground

For anyone wondering what’s up with me and my health, here’s a brief update.

Touch wood, things are going well. After my first chemo infusion on Dec. 28, I was slammed — could scarcely get out of Mark’s recliner (the one he inherited from his grandpa, a sturdy late-mid-century thing built like a Humvee) for 2-1/2 days. I’ve always wondered what chemo side effects were like. Of course, they vary greatly — different drugs, different metabolisms. For me, those first two days following the infusion had me feeling as though I was trapped in a steel cage too small for my body and mind, with abdominal pain and mild nausea, a headache (possibly due in part to caffeine withdrawal, as I went cold turkey after years of 4 to 5 cups a day) and unrelenting hot flashes alternating with chills. Miserable.

Pharmacist Cindy Burns says the temperature modulation problem was likely due to overstimulation of my parasympathetic nervous system. Of course there are other side effects, the most concerning of which is peripheral neuropathy caused by oxaliplatin, which makes typing or working in the shop a real challenge unless you are one of those people who enjoy the sensation that everything you touch is covered in sharp pins. (I will spare you description of the effects on my GI tract.)

The good news is that neither of the next two infusions has left me with severe side effects. These last two times I’ve felt alert and energetic. We’ve reduced the oxaliplatin by 20%, which helps a lot. Cindy says the difference in side effects may be due to the particular regimen I’m on, Folfirinox, which causes massive cell die-off in the first cycle. Yuck. I hope she’s right; it’s a blessing to feel so good.

I don’t want to jinx anything but will say I’m feeling better than I’ve felt in a couple of years — startling, given that I have pancreatic cancer and, thanks to chemo, my white blood cell counts, along with hemoglobin levels, are in the danger zone. In view of my immuno-suppressed condition amid the still-raging pandemic, my oncologist, Dr. Karuna Koneru, has told me in no uncertain terms to avoid going into any buildings other than for medical treatment. This means no more mailing of books ordered through my website, where I have posted a note directing people to order “Making Things Work” through Lost Art Press.

Thanks in large part to the success of “Kitchen Think,” I am busy with kitchen design jobs, the perfect type of work for those times when a simple cut in the shop could become infected and cause serious problems, including death, due to my compromised immune system. If my counts are in the Serious Danger Zone when I return for my next infusion, the chemo will be delayed a week and the insurance company will cover the cost of Neulasta, which stimulates production of white blood cells in the bone marrow. (Our insurance does not cover this life-saving drug unless the patient’s life is genuinely and imminently at risk, which strikes me as unfortunate, to put it mildly.)

I’m also making good progress on “Shop Tails,” the book about animals, life, and work that I’m writing for Lost Art Press, and keeping up with regular blog posts. This Sunday morning, thanks to a recommendation by Peter Follansbee, you’ll find a profile of Arts & Crafts chairmaker Lawrence Neal at Lost Art Press, and my next post for the Pro’s Corner at Fine Woodworking will share some of what I have learned about choosing healthcare coverage when you’re a self-employed craftsperson or artist, a topic in which I have now had a crash course.

25 responses to “Sunny with snow on the ground

  1. Like everyone else, I’ve been awaiting an update — but so glad you decided to tell all of us together, when you were ready. Amazed, pleased, and thankful that things are going (relatively) well. Love and warm blankets with the chills come.

  2. Thanks for sharing this happy update, Nancy! I am so glad that you are feeling well, and fingers crossed that you continue to improve with the chemo treatments. For my part, I’m hoping to read Kitchen Think for a third time this weekend 🙂

  3. Thank you for the good news about your current treatments, I’m sure you’ve been on far more minds than mine. And also for something more to look forward to later this weekend. Your profiles are more than interesting and inviting. The warmth of your curiosity in your approach to these individuals’ stories with reads like kindness on the page.

  4. Nancy, what great news. I am so pleased to hear of your progress. That’s wonderful. I’m praying that you will have full recovery and beat the beast. Thanks for the update. Be safe, be we,,.

  5. Marc Stonestreet

    Thanks for the update, Nancy. You’re constantly in my thoughts. Sending it all.

  6. Nancy, so glad you are feeling better. Hopefully you can be distracted working on your passion. Wishing you the best.

  7. I’m glad to hear that you have a good old recliner to rest on, they are the best. My thoughts are with you, and I am looking forward to reading your next profile on LAP’s blog.

  8. Dear Nancy, I have been meaning to write since last week when I learned about your diagnosis from Facebook. You are as always amazing and I love the conversation your words get going in my brain. Ben and I send wishes for happy companionship with your sweet animals during this pandemic isolation. We feel so blessed every day by the thoughtfulness and beauty of your design and craftsmanship (craftswomanship?). Here’s to effective meds and healing!

  9. I only encountered your work yesterday, and am already a huge fan. I found the news in your e-mail reply to me to be really depressing, but I’m encouraged to read this post. Hang in there, you have a lot of people out here pulling for you. And as of yesterday, you have one more.

    Our world needs people like you.

    Cheers, Eric

  10. “For anyone interested…”. You ought to be spanked. A whole bunch of people have been wondering for weeks. Anyway, chemo… The blood chemistry thing is the really dangerous part, as you now well know. It will kill you long before cancer. I had a simple charlie-horse in one lower leg. Had charlie-horses since before junior-high track, you rub ’em, stretch ’em, eventually they go away. NOT!

    A charlie-horse is actually a blood-clot, and in my chemo-depleted blood chem state blood clots no longer dissolved, they formed embolisms in my lungs. I was maybe an hour away from goner when my usual reaction to my weekly chemo put me in the ER, where I got to watch my charlie-horse on ultra-sound spit out more clots. Injected blood drugs every day for the next year, noon, in my belly.

    So, in THE NOTEBOOK you were instructed to create some weeks ago you will have noted ALL AND ANY changes in condition OF ANYTHING with the time and date, plus all the phone numbers of anyone and their family, and temp, blood ox, etc., etc., etc., and you are talking to everyone about said changes.

    Also, my HMO, Kaiser, put me in the infusion lab EVERY DAY for saline drip, plus eyes on. And made arragements for weekends and holidays. Eventually we did it at home, but hydration, hydration, hydration.

    • Yep, staying hydrated. I made the notebook, in which I keep a record of everything I put in my body, every side effect, etc. Apologies for being so bad about sharing news. I will do better, but I don’t want this to turn into a blow-by-blow account of medical and other procedures.

  11. Nancy, So glad to hear you’re feeling better. My heart goes out to anyone who has to deal with chemotherapy. I was lucky that my cancer was dealt with with only radiation. But my wife had chemo that lasted about a year. I have every faith that you’ll come out the other side stronger than ever.

  12. Giving up coffee cold turkey in itself makes one feel like crap, let alone the chemo and side effects. That must have been a hard first go at this. Ruth G. would be so proud.

  13. I’m wishing the best for you and sending healing thoughts your way. (Happily, they don’t decrease with the square of the distance.)

  14. Thanks for the update Nancy; I have been wondering how you’re doing. Glad you’re feeling pretty well and spirits seem good. I’ve got all my fingers and toes crossed for you.

  15. So happy to hear your good news; sending every wish for your continued health and recovery. Thanks for taking the energy to let us all know how you are.

  16. Pingback: Let’s Help Nancy Hiller with Medical Bills - fooledbyart

  17. So glad that you’re doing so much better than after the first chemo! Praying for you! And sending love!❤️🙏🏻🥰

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