Hello, Kelly fans. It’s Steve again. When someone has a cancer blog and they don’t post for a while it’s easy to assume the worst: So let’s address that first: Nope, not the worst. Another reason for a long post interval is that healing cancer, whether or not one subscribes to an holistic, integrative approach, is a near full-time job.  People often ask me, “How is Kelly doing?” A simple question with a complex answer, but I think I’ve figured it out. I see that at many moments of her day–sometimes for prolonged stretches, Kelly has joy, contentment, mindfulness. On infrequent occasions, like when well-meaning doctors ask well-meaning radiology techs to squeeze her breast in a torture machine (mammocram) that also produces informative images of breast tissue, tumors and various metal clips, she experiences excruciating pain. Kelly believes that there should be a similar squeezing device for testicles. That would surely hasten the development of more humane imaging technologies. Kelly’s joy comes from simple things: sunshine, dipping her feet in Boulder Lake, walking in the forest, singing lullabies to a grandchild, time with elephant sisters, six-second kisses. She says kisses should be six seconds long to stimulate the release of oxytocin–what we call “Oxy”. We are both convinced that joy is therapeutic.  You probably want an update on the mechanics of her cancer therapy, so here it is: We have learned a lot since January. For example, there is so much to learn. We have learned that conventional cancer treatment is very narrow in its perspective. Poison it. Burn it. Cut it. And we have learned there is half a world and at least a millennium of complementary practices that could be as important or more important than the mechano-radio-chemical approach to cancer treatment.  I no longer embrace the theory

7/2/24 – This post is brought to you by ThedaClark Emergency Room. Where ill and injured people come to wile away entire days in uncomfortable accommodations, getting temporary relief but few answers to their debilitating pain.  To be clear, this visit isn’t about me.  My mom developed severe neuropathy-type spasms at our cottage yesterday that intensified overnight.  Multiple scans & injections later, she is back home, stable & resting.  Again, very few answers, but not for lack of effort by caring, overworked healthcare professionals.  Also not surprising in this country’s dysfunctional care system..  which I’ve become all too familiar and (more) disillusioned with over the past six months.   My own health journey hit a slight speed bump after the last round of scans in late May.  Not a detour, but definitely a moment to hit pause and reassess next-steps.  First item on to-do list, explore 2nd opinions from both Mayo Clinic and a highly recommended oncology group in Illinois.  Other facilities were considered, but since all are “out of network” (ie big $$$) these two checked the most boxes for practicality and proximity.  Several weeks and many hours into the Mayo process, the impracticality became clear.  In-person appointments over two weeks would require multiple trips to Rochester, reschedule of existing treatments, cost a boatload (unspecified “max”) and likely result in similar recommendations to UW.  The Block Cancer Center in IL felt like a better fit from the start.  Still many hours of scheduling, intake forms, records authorizations, but more streamlined with transparent cost estimates.  Provider appointments over the next few weeks will be via Zoom, so no travel and less disruption. They offer a holistic approach with conventional and complementary treatment recommendations.  Next, Steve & I meet with UW oncology this week to discuss how any new opinions might dovetail with

5/28/24 – Our magical, wouldn’t trade for the world, trip to Italy meant stacked medical appointments upon return.  I called 5/28 Super Tuesday – oncologist appt, treatment #5, mammogram, another mammogram, ultrasound, another ultrasound, and finally a surgical consult. The scan results were not so super.  Slight improvement in the largest tumor, another shows no change.  But the biggest concern is what the surgeon calls “chunky” lymph nodes.  If responding to treatment, the nodes flatten out, which the radiologist doesn’t see happening.  Carbonne’s care team will discuss my “difficult” case in a multi-disciplinary conference next week and make a consensus recommendation.  They’ll likely suggest adding standard chemotherapy for 2-3 more treatment cycles to see if tumors and nodes can be reduced before surgery, which has been pushed back for now.   This was the first time complete mastectomy and nodal dissection has been discussed (at least that either of us remembered.)  Why?  Mainly because the largest, octopus-shaped tumor’s tentacles are so spread out.   A bit of information overload, disappointment, and the feeling of one step forward, one back.  Inspirational quote of the week from my wise friend, Carrie.. “Maybe the piranhas have eaten all they can.  Now you have to kill the piranhas.”   

4/19/24 – By Steve We think of “cancer survivor” as someone who had cancer and is now considered to be free of the disease, but really everyone with cancer is a cancer survivor from the moment of diagnosis. With each breath she has survived another moment, and each of these moments is worth celebrating. This is how I think about cancer now that it is so much closer than it was when I imagined it as a disease that other people got. No doubt it will be great to someday look back on cancer as a chapter that ended many pages ago, but it seems to me there is no reason cancer survivor shouldn’t start right now. Kelly asked, because “I know you like to write” if I would compose the next edition of her c-blog, which, I suppose, could be called clog if that were not the name of a clunky type of footwear. I am glad to contribute. I would like to tell you that all is good, but nobody has all goodness, and it would be a mistake to desire something so elusive. I can tell you that many things are good, like our awareness of the importance of the moment. This moment. The sunrise. The stars and the moon. Music. The sound of the wind in the tree tops. A child’s hug. A hike in the woods. Each bite of real food, made with real ingredients, prepared with real artistry. Kelly is our food artist, by the way. My art is eating. And now, the nuts and bolts update: After cycle two of fancy-named targeted immunotherapy by IV infusion and a daily pill (aromatase inhibitor), a scan. Scans can be scary because they can reveal bad news. But they can also reveal good news. This scan

4/3/24 – The few people checking this site have surely figured out that I’m horrible at timely updates and right now, at least, I have a decent excuse for being horrible at timely updates. The early months of this journey have been enlightening on many levels, one of which is that so much of the experience is hard to articulate. It feels somewhat comparable to our recent Disney vacation. Exhaustive research-planning-scheduling, emotional overwhelm, suspenseful wait times, and leaps of faith to (try to) enjoy the ride. Especially the rollercoasters. Strap in, get pulled along by unseen forces, twists, turns, pauses, calm, exhilaration, and times when things feel completely out of control. The days leading up to 04/01 – PET scan #1 to assess the first two immunotherapy infusions’ effectiveness – presented the steepest emotional ascent since diagnosis. My non-standard-of-care (convention-bucking) treatment protocol is based on a multi-phase clinical trial. Since so few details were shared, I spent hours going down research rabbit holes trying to determine what response markers (tumor size, lymph node activity, etc) they’d be measuring. No surprise, that only heightened my anxiety. Scans themselves have become routine thanks to consistent breathwork practice, but the pre-post anticipation is still excruciating. Thankfully, my soul sisters are infinitely brighter than me so instead of waiting most of the day to open MyChart, I was encouraged to check results after just an hour. There in fine, mostly unintelligible, print it said “overall favorable response.” Next day’s oncologist appointment confirmed our cautious optimism. While not at Disney’s TRON Lightcycle launch speed, things are generally going in the right direction. At least to a point the provider team has agreed to continue “chemo-light” immunotherapy for two more cycles, with another PET response scan in late May. Phew, I’ll take it!

3/19/24 – Reality setting in?  Initial shock wearing off?  Expectations weight for kicking this shit sans nastiest meds feeling like an anvil on my chest?  Hmmmm, cannot imagine why, but my nervous system was lit-up heading into infusion 2.0.  Because of my conventional chemo aversion coupled with concerns about the immunotherapy-only clinical trial, the UW oncologists offered a Plan C (most likely to shut-me-the-hell-up, already):  PET scan response assessment after two cycles of targeted immunotherapy (Herceptin & Perjeta) + endocrine therapy.  So, in hindsight, the pre-Round 2 anxiety is a little more imaginable.    Spent much of the day sitting around between appointments, but the actual infusion time was quicker, since drugs were combined and administered at a faster rate.  That may also explain the acute side effects, which thankfully ran their course a little more quickly (week-ish.)  Pick your poison, I guess.  Haha, too soon for support-community-wide tumor humor?  Nah.  Actual car convo last week… K:  not feeling great today, S:  huh, maybe you’re coming down with something,  K: you mean, like, cancer? 😆  Currently in countdown-mode to PET-CT on April 1, which is also LJ’s fifth (how???) birthday.  So, if everyone could please visualize plankton-eating piranhas nibbling away at these boob(y) traps, that’d be awesome.  Thanks. 

3/6/24 So apparently the “brain fog” is real since I forgot to post this! Oh well, at least I have an excuse now. 😉 First things first today, I need to acknowledge how extraordinary my dear friends and family have been during these initial weeks of chaos, overwhelm, and decision making. Has it really only been six weeks since that first mammogram?! Those who know me well have instinctively understood when to check in, give space, drop off soup, go for a walk, meet for coffee, send a card (or) flowers (or) fuzzy socks & pj pants! I’m profoundly grateful and incredibly fortunate to be supported by such special humans. Medically, some minor side effects set in after endocrine therapy start date & infusion 1.0. Tried not to “expect” anything but then GI upset, extremity neuropathy (Steve calls it parasthesia, which I’m too lazy to look up) and joint pain landed pretty hard. The biggest annoyance has been skin outbreaks – cold sores & acne. Seriously?! Like I didn’t have enough of that the past five decades. And, yet, here we are. That being said, the worst has been manageable and relatively short lived (8-10 days) so we shall see what happens next round AND I’m going to enjoy the upcoming week.

2/26/24 – Immunotherapy Round 1 Some definite nerves heading to the UW chemo clinic for 7am labs, 8am infusion.  Patrick provided timely inspiration with Calum pics and G’dot FaceTime.  Ever-perceptive LJ inquired immediately about the unfamiliar background.  After explaining that an owie inside my body needed medicine to help it go away, she quickly followed with “how did you get the owie?”  Excellent question. My instinctive response was “well, sweetheart, it’s partly because I didn’t express my feelings enough growing up.”  Sorry (not sorry) mommy & daddy, it just came out.  As the nurse led us to an infusion room, a wave of Terri memories engulfed my heart.  But instead of drowning, I felt wholly supported by her strength and love.    The infusion itself was relatively uneventful.  Steve got hungry after the first 10 minutes, and walked to Barriques for coffee.  Got hungry again, so found us an asian chicken salad for lunch.  Despite my disdain for UW’s factory feel, they’ve raised their food game.  Even some local producers.  The cafeteria & Mendota Market may even meet the Maize app criteria.  Six hours later we were on our way back to the farm.  Guess we’ll award Round 1 a TKO – Technical Knock(ers) Out 😉