Cancer Update

Today, the summer solstice, marks the half year mark of the discovery that I had Metastatic Melanoma. My wife Victoria again wrote a wonderful newsletter to my extended family, and I got her permission to pass it on to you. (She’s really, really good with words.)“This will be a more lengthy update…because it’s been awhile, but for you “get to the point/don’t bury the lede/cut to the chase/what’s the bottom line” types—all’s good.  (I’m one of those types, so I sympathize.  Although I just drove you crazy using four chestnut’s when one would have sufficed, didn’t I?)
“We’ve just returned from Rick’s three month MRI, and the news is good.  Everything in his brain is stable—which is an amusing adjective for Rick’s brain.  It’s good news.  The left frontal lesion, which had shrunk from its original size, now looks like “treated disease” or what’s left after the melanoma died off.  The original lesion in the right occipital lobe is stable—same size, same shape—which likely means that what is showing up is inflammation and cell disturbance from the original CyberKnife treatment.  The “pretty significant” swelling in his brain remains, but is also stable.  There was in May a new finding of something going on in a lining of the right ventricular horn, next to the occipital lobe.  At that time, the doctors felt it was likely inflammation/radiation effect, but were also concerned it could be disease spread and were looking to this MRI to provide more information.  The fact that it is stable reinforces the opinion that it’s not melanoma—as Rick’s doctor said, “Melanoma doesn’t just sit there.”
“So—it looks like no active melanoma in his brain.  And that’s, as you’ll recall, on top of the disappearance of melanoma from his body.
“Since my last update, he’s had two incidents of very severe headache and nausea, the first of which sent us to the emergency room and the second of which was treated in the medical center (more pleasant and much less expensive.  Our new mantra:  Don’t Go to the Emergency Room!  Although his doctor was ready to send him there until Rick suggested, gee, couldn’t we just wait the five minutes it will take to see if the CTscan we just finished shows any new problems?  Why, yes, I guess we could wait.  Oh, look at that, no new problems, let’s just give you some anti-nausea medicine on top of a fresh dose of dexamethasone and send you home.)  It was unclear both times what caused the “crash.” With the first, he had finished tapering off dexamethasone (which he had been taking to combat inflammation in the brain) and the timing of the “crash” suggested it was steroid withdrawal/inability of his adrenal system to produce its own cortisol, as did the fact that the symptoms resolved with a 2mg dose of dex.  But no one (least of all Rick) wants him to stay on dexamethasone, and we do want to figure out if his adrenal system is working (which you can’t tell with that much dex floating around in your brain) so after consulting with an endocrinologist, he switched to hydrocortisone, which more closely matches the cortisol his body should be producing and which, with a slow tapering off, should coax his adrenal to restart production.  He passed the 72-hour dex withdrawal half-life with no crash, so it seemed he was in the clear, but then three days later had his second crash.
“So, then, the inquiry became, is this killer headache and nausea caused by the continuing inflammation in his brain, or is it something more akin to a good ole’ migraine, perhaps triggered by all the stuff going on or just because he (and a bunch of you Ackerlys) get migraine?
“A very good consultation with his very good Neurologist suggested that initiating migraine treatments—one to ward them off and one if they should nonetheless occur—is warranted, provided today’s MRI didn’t show anything nefarious.  So with everything stable, he’ll begin once again to try to get off the dex, get on the cortisol, coax his adrenal gland back into production and ward off migraines.  All good.
“A little look ahead…
The events of the last couple years have made me hesitant-to-paranoid about any speculation about the future.  Don’t say it!  Don’t write it!  The gods have an overly ironic sense of humor.
“However, just between you and me, there are some good evidence-based indications that Rick’s future could be…a future!  For people with melanoma who have a good response to nivo—like Rick—the response tends to be durable. Unlike, say, lung cancer, which responds to nivo for some months but then tends to reoccur, once melanoma is eliminated it’s unlikely to recur and if it does recur, perhaps a year or so later, it tends to respond again to reactivate of nivo treatment.  Doctors do tend to keep people on nivo for up to a year after there is “no evidence of disease” in part because the drug is so new they just don’t have enough data to know when it may be safely discontinued.  But there are people who have had to discontinue early due to side effects, and their response has been durable.  Today, Rick’s doctor said he’d like to keep Rick on treatment for a year, and that he would look into switching him to once-a-month treatments, which could mean that Rick’s looking at 12 more treatments…and that could be it! Life could be…pretty normal.  But don’t tell the gods I said that.
OF COURSE—it could go another way.  But don’t tell the gods I said that, either.
“Unless something pops up, there will be ongoing scans every three months or so.  And I hope, nothing to tell you.”
Friends, I am enormously grateful for all your support over the course of the last half year. Thank you, and special thanks to Victoria for putting her playwriting and acting career on hold to get me through this. One of our favorite lines of all time comes from a New Yorker Cartoon of a board room where a guy is saying: “So you say that it’s going to be ‘win-win,’ but what if it all goes bad-bad and we lose-lose?” Let’s not give the gods anything to laugh about.

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29 Responses to Cancer Update

  1. Tim Kniffin says:

    glad to hear it, Rick!!!

  2. Diane Fiorella Carroll says:

    Hello, Rick. I’m a flash from your past at Notre Dame in Kansa City. We both started back in 1974. I am thrilled to read this great news on your health! Thank your wife for such an accurate report on your last scan. I can’t imagine what you’ve been going through but you have my best wishes and prayers for continued success of your medical treatments.
    I just completed 41 years in education in Overland Park, Kansas. I am currently retired. I spent a good portion of my teaching as a mathematics specialist, assisting teachers in their classrooms. I loved every minute of it. Along with my husband, we raised a son and daughter and now how have two darling granddaughters that I adore. Life’s been good. I fondly remember the days at Sion. Jeanne Nance, Noreen Kraft, Joan Fitzpatrick, Kathy Dasta, Jan Long, Mary Fasenmeyer, Joe Moore, Peggy Fowler, Carla Gish, and so many more. I feel so fortunate to have worked for you and so many wonderful people at Sion. We were not only colleagues but very good friends. It was a unique and adventurous experience in education and life. I feel very blessed to have been part of this wonderful group of people. I still am very close to Peggy, and keep in touch with Joan and Carla.
    Thank you for sharing this road with us. Your determination is a strong example for all of us. You will continue to be in my thoughts as you fight this disease. You are in my prayers, Rick.

  3. Rick says:

    Diane! of course you need no reintroduction to me. You were the first person I hired when the school was in extremis and you were one of the reasons it pulled out of is slump so fast. You were a great teacher from the first day–and I remember how your first move was to assemble all those 1st and second graders at your feet. Yes, we formed a wonderful learning community. Congratulations on a great career and more wonderful children–let’s do it again!!!

  4. All your college buddies and school colleagues are pulling for you, mon ami.

    Fake right, go left and shoot on this opponent.

    Pat

  5. Gary Gruber says:

    Rick,
    I am so glad we had the opportunity to re-connect in San Francisco @ La Marais. More to share down the road.
    Loved this detailed account from Victoria and especially the amusing adjective “stable” to describe your brain. We should all have such good fortune. I have questions frequently about my own state of mind having nothing to do with Cancer. Speaking of Cancer, did you ever read “The Emperor of All Maladies” by Siddartha Mukherjee? I thought I would not understand the science part but got through it with a much better understanding of so much that’s going on behind the scenes. For now this, which I had forgotten I had written some time ago. garygruber.com/the-big-c

  6. Corey says:

    So glad to hear it!

  7. Yeah Rick. I am happy to hear good news. Everybody here is rooting for you and your friends and family to whip this cancer’s ass. With love and affection.

    Ray

  8. Jenifer Fox says:

    Rick,

    Thinking of you. Thanks for the courageous updates. Keep on, friend.

  9. Susan Porter says:

    Sooooooooooo glad to hear such an optimistic report. Thanks, Victoria, for the detail. I’m not a “get to the point” person.
    Just wondering. Does this make you a stable genius?

  10. Rosalind Hamar says:

    Dear Rick & Victoria, Thanks so much for the update and it is definitely good to hear things are looking clear now. It is almost impossible to totally understand what you have been going through. I do send love and prayers your way and hope to see you one day in the not too distant future! ❤️🙏❤️🙏

  11. Pam Keon says:

    Wow – such a pleasure to read this, in so many ways. Thank you so much for sharing your progress, Rick. We’re all rooting for you!

  12. Jennifer Furtado says:

    Fantastic news Rick.

  13. Paul Chapman says:

    Rick, I am so grateful to have this really encouraging report about your continued recovery. I know much praise is to be given to your amazing medical team. But how about that Rick Ackerly enthusiasm for life I’ve known for three decades. Keep it up Rick!

  14. Kate Foley says:

    Great news, Rick!!!

  15. Rick:
    Wonderful news!!! My thoughts and prayers are with you.
    Seeley

  16. Andrea Helland says:

    Glad to hear Rick! Wish you all the best on remaining cancer free ! Enjoy life!
    Gib, Andrea and Bennett Helland
    (FYI We relocated to Idaho to get out of the Bay Area chaos)

  17. Atri Chatterjee says:

    Wonderful to read this good news! We hope your recovery continues and that you keep up you active life. We also look forward to you getting back to your writing and blogging.

  18. Darlene hoffman says:

    Hello, Rick, I can’t help thinking your courage and positive attitude are prolonging your life. You are in my thoughts!

  19. Andrea Feynolds says:

    Rick, such a great read! So glad you are doing better. Keep fighting!!

  20. Lisa Rappaport says:

    So happy to hear this good news. Stable is good! Thank you to Victoria for such a thorough, optimistic update. Looking forward to seeing you soon : ). Lisa

  21. Scott Duyan says:

    Thanks Rick and Victoria for the update. Blessings and continued health and improvement to you Rick. We’re looking forward to having you present at the Center for Progressive Education in October.

  22. Michael McNabb says:

    Hey Rick!
    Really good news, keep it up! Looking forward to chatting with you again in a café in SF.
    Shane is headed to Urban in the fall, thanks in part to CDS, which was thanks in part to you. So… Thanks!
    – Mike

  23. sgrassi363@gmail.com says:

    Thank you for that wonderful update. Tony and I are so happy to hear the encouraging results of your most recent tests. We are happy for you and hold you in our thoughts as you continue to recover. You have been, Rick, a wonderful inspiration for many, and, Victoria, we have not yet met you, but thank you for your detailed and lovingly humorous update. We have just met with another school (Waynflete in Portland, Me) and are hopeful for a new Horizons program there! Warm regards, Sally Grassi

  24. Elsa says:

    So heartening to read this sanguine sequel to “Not yet dead,” Rick! (“Still Alive!”) Your courage and your perspective, along with all us fond fans pulling for you, generate a powerful defense. Hear us roaring?!! “Go, Rick! Beat Big C!!”

  25. Karen Crommie says:

    Speaking for your colleagues at the Economic Round Table, congratulations on what has to be considered good news. We should all be so lucky to have such a smart cookie explaining our conditions. Thanks, Victoria. All of the members are pulling for you. Keep coming on Wednesday mornings. Our “after parties” are good for the soul.
    Karen Crommie

  26. Such good news … I hope we can meet again at Marais again soon!

  27. Love Weinstock says:

    Sending love, peace, and hope to you and your family.

  28. Fran Endicott Armstrong and Rick Armstrong says:

    My Rick and I are so glad to read the good news. For my part, I will continue to pray with you to the one DEity and keeps “the gods” from enjoying any humor. May your recovery continue smoothly (preferably with migraines and nausea). Stay strong. Thanks to Victoria for helping to keep you well and strong and her excellent report. Love, peace, joy, & hope,

  29. Brian Hicks says:

    Only reading this now… And so glad I did!

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