Margaret's visit was a pleasure. As you may have read, she was the one we brainstormed to invite to stay with me while Don went on his meditation retreat in Minnesota. Margaret left a few hours ago, and Don is due back tonight, and I feel very well-loved and cared-for. Margaret brought materials to begin work on one of her gorgeous art quilts, and I began work on a beading project, and we spent a lot of time on a jigsaw puzzle I had in progress. We also swam together (we made it most of the short way across Lake Wingra and back on Wednesday!) and talked and ate. I managed to do quite a bit of work while she was here too, since I had some energy and a lot of our meals were being provided, and Margaret was taking care of everything else that needed doing, and then some!!! (she even cleaned the raccoon poop off the back porch -- a rather icky perennial problem that I've completely let slide this season). [...]

It's been a good few days, with some fatigue and other annoying symptoms (e.g. nothing tastes normal, and the inside of my mouth feels coated in a weird way) but it's all manageable. After a nap today I felt up for my first swim of the season in Lake Wingra. Lovely! [...]

Yesterday's planned chemo treatment got postponed to today. (I guess the feeling I had over the weekend that I was hiking in the Rockies in WI wasn't my imagination). When I got this news, instead of heading home, I had my chemo buddy Jen drop me off at the CORE office part-way through a meeting I'd been hoping to Skype into from the chemo chair. It was great to see everyone in person and participate more fully than I would've been able to do. I realized I was doing what my Strozzi somatics training calls "two-stepping." The Two-Step is an exercise drawn from Aikido, and in it you take a couple of steps while reversing direction 180 degrees, and do it a few times, practicing finding your center each time you change direction. It's good practice for a sudden change of plans. We also shifted our staff meeting that had been planned for today to yesterday, and I opened it by beginning to teach Julie and Elizabeth the Two-Step!  It felt good to be able to access this internal flexibility, and to have the staff so able to meet me in kind. [...]

May 29th was the 10th anniversary of our wedding (and marks almost 12 1/2 years since we began courting). I was feeling well enough that we actually got away for a couple of days, to a sweet little AirBnB in the Kickapoo region of WI. The weather was cold and rainy and I was fairly fatigued a lot of the weekend, so we didn't end up attempting a canoe or kayak down the Kickapoo (one of my favorite activities, so Don promised me a raincheck). We did have a lovely 1.4 mile hike up "Mt. Pisgah" (a 365 ft climb to an elevation of 1220 ft above sea level). I felt like I was hiking at 8,000 ft, probably due to lower hemoglobin levels or some other blood count thing. I took it "polay, polay," stopping every few feet near the top, and resting at the overlook for a long time. It was beautiful, with old growth hemlock and lots of fading trillium flowers. It had been raining most of the day and the sun came out while we were at the top! Later we sat (me wrapped in a blanket), on the deck of our cabin which was in a little valley, and watched the sun setting and strange cloud movements (higher white wispy clouds moving northeast, while lower, heavier, dark/gold-lined clouds moving southwest. On the way home yesterday we stopped and I took a short swim in Mirror Lake, despite the air temperature being only 64 deg. F (and the temperature of the concrete floor of the pit-toilet where I changed being what I was guessing to be 40 deg. F!)[...]

Yesterday's chemo treatment (a day later than usual due to the holiday) went well, despite some initial delays in the lab in the morning. I had lots of extra company (see picture) and even got into a pretty in-depth conversation with the nurse Amber, who had a lot in common with my friend Karen who was with me. Apart from a couple of foot cramps during the treatment (something I am subject to anyway and not something the medical crew was worried about) I seem to be tolerating the Taxol fine (they worry about an allergic reaction the first two treatments so do it in a hospital bed in a bay with a door, rather than a chair with just a curtain -- thus the railing in the picture between me & my company. [...]

First an update on my physical state -- The last few days have been pretty good. I've been having some fatigue, and increasing my heart rate by any exercise more vigorous than a walk seems to cause a brief throbbing headache; but no stomach distress, and some real appetite, without major use of anti-nausea meds (this also means fewer side-effects from those meds, i.e. less constipation & hemorrhoids). Yay! Some pain and itching from the port site and I'm a little achey, probably from the combination of blood-cell regeneration, lying around a lot, and lack of swimming while the port incision heals. Thankfully Tylenol increases my comfort sufficiently. We made an extra trip to the almost-deserted UW Hospitals & Clinics on Saturday, to get help removing the bandages over the port site, because by the time the appointed day arrived my skin had started reacting to the bandages (a burn-like effect). It was humorous watching the skeleton crew of doctors and technicians trying to figure out how to do basic tasks without the nurses and assistants there (e.g. not calling out my name in the waiting room or asking my date of birth; bringing me into an operating room for the task; and having to go find a key to unlock the cabinets to get the supplies). Fortunately the actual hands-on care was still excellent![...]

I’ve been musing a lot about caregiving, receiving, and community, as I go through this journey. Today, the 3rd day after port placement and first Carboplatin/Taxol treatment, I'm feeling quite well, well enough to put some of those musings in writing.[...]

Well so far I've been feeling okay with this new chemo and the recovery from the port placement. I've had a few twinges of stomach discomfort, but was able to enjoy some of the Thai food delivered to us tonight, and had a wonderful shiatsu session this evening which helped me relax and even made me feel happy some of the time! The oncologist sent me home without two of the major anti-nausea meds (Emend & dexamethasone) they prescribed for the previous chemo side effects, because they don't expect as much nausea with this set. I still have granisetron and compazine to take as needed. I'm trying to be curious about the stomach twinges, and practice "hosting" the sensations and my reactions to them, rather than letting my fear and aversion run away unchecked, which tends to exacerbate the stomach distress. (I got this idea of using the "hosting" concept this way over this past weekend at a wonderful Inner Refuge retreat with Marcy Vaughn, hosted by Anne Forbes of Partners in Place). I'm also trying to "surrender to the unknowable," including what the next moment/hour/day will feel like; this phrase came out of an alignment coaching session given to me yesterday by Robert Gass, one of my brilliant teachers. [...]

And is continuing round cape Taxol and cape Carboplatin. We're in a chemo room, just saw the doctor, and they'll start chemo soon (we hope). Becca is bright eyed and alert and showing off her new port in the photo.

Becca and I are sitting in the waiting room, waiting for her blood to be drawn.. Once they draw the blood, we'll go up to radiology where, once the blood test results are back and they are sure her white counts are high enough to support healing, they'll do surgery on Becca to place a port under rhe skin in her chest, so that she can have future blood tests and chemo without having to have IVs. Although we had originally decided not to have a port, assuming 8 total chemo treatments, the revised chemo plan has 16 total treatments, so we changed our minds. After the port is placed, Becca will recover from the anasthesia in the chemo room, where they will do her chemo today with two new drugs, taxol and carboplatin. Taxol will be weekly for 12 treatments, and carboplatin will be every three weeks for four treatments, beginning today. We expect she'll be woozy for a while today after the port placement. Our oncologist will see us in the chemo room about 11:30. Our friend David Levine is visiting and will come to sit with Becca after noon so I can get a break. They'll drive home together when she is done, which we estimate to be around 4 pm. Becca's shiatsu practitioner is coming to the house at 6:30 pm to hekp support her healing, and someone is bringing us dinner. Because these drugs are new, we don't know how Becca will react to them, so Becca has cleared the decks of work so she can relax and heal this week, and we can roll with any side effects that appear. David is keeping us company until Thursday morning. That covers the facts, to make the Sergeant Friday in us happy. I seem to be a bit nervous about the procedure and new drugs today. It's hard to just swing with the constant changes. So I don't sometimes, and that creates some suffering for me. It helps to do my practice every day, make sure I find social outlets (mostly Buddhist events), and get some exercise. But I am noticing that the journey is feeling long lately.