My Body Found a Cliff

It would of course be inevitable that the minute I claim to be doing okay and not falling off any health cliffs, my body would find a cliff to jump over. Friday evening, it gave me the opportunity to see if I could compensate for another round of diarrhea, away from home base and with what I could bring to hand. I managed to do that, though I did miss a half day of the Fielding work session on Saturday. But I recuperated in time to participate in the afternoon and evening—not feeling fully up to speed, but okay to be in public. And today I made my slightly uneasy way home on the airplane, still glad I did the trip and pleased that I avoided a serious downtown, but also disappointed that I had to deal with another bout of this stuff so soon. I get part B of this current round of chemo on Tuesday, so we’ll see what that brings.

Phil and I plan to head to the boat after my infusion on Tuesday, and do more work to get it ready. We’ll be back in town Friday and Saturday, celebrating Phil’s 74th birthday on Saturday evening—the first time we’ve been in town for his birthday in more years than I can remember. On Sunday our friends Charles & Valerie Reynolds will drive us up to Anacortes and return with our car to Seattle, so then we’re down to doing the final work getting the boat ready for launch into the water on Tuesday, the 8th.

Will keep you all posted as I am able—I’m going to be in the season where I won’t have ready access to a computer (rather, to the Internet) every day, so will post things when I can.

It’s good to be back home—even if it is hot (in the 90’s, which for Seattle is incredibly warm). No airconditioning, so we just let the warm wash over us and pray for a little bit of breeze as we sleep.

Learning in Arizona

I am back amongst the learning community of Fielding that inspires me each time I join it. The gathering I am attending is all alums of Fielding Graduate University, and what’s unusual is that we are from all three of the major “schools” at Fielding: Clinical Psychology (the oldest of the schools), Human & Organizational Development (the second school and the one from which I got my degree) and Educational Learning and Change (the most recent school to arrive). Since each school plans its national sessions separately, there are rarely opportunities for students or alums from the three schools to meet with each other. Though the areas of our degrees are different, what we all have in common is that we came to our graduate work in mid-life, as mature adults, most of us with rich work and life experience driving our desire to do more formal learning. We all sought out an institution that would give us some latitude in how we structured and shaped that learning, so it would be meaningful for us, not simply driven by the traditions of the institution or research of the faculty we happened to work with.

That somewhat unique learning experience creates a sense of community and energy that is palpable each time a group of Fielding graduates gets together. What we’re working on is ideas about how we might want to continue to engage with each other and with Fielding as alums, on new learning experiences, projects or research, creating an opportunity for Fielding to truly offer lifelong learning opportunities for its graduates. I am renewing friendships, deepening other relationships and meeting new people—Fielding people are always very interesting people!

So my intellectual and psychological self is being nicely refreshed, while I carefully try to support my physical self through this experience. I am feeling my way through the Tucson heat (above 100 so far each day so far, yesterday mitigated by afternoon showers) and trying to sustain my various medical routines to keep myself in balance. A bit of a challenge in a hotel environment, but so far I’ve managed to keep myself from slipping over any health cliffs. I have a very caring group of people looking after me, checking in on how I’m feeling and offering to do anything they can to assist me if I need it. So I am truly in good hands.

I am mostly pleased that I managed to get myself here—since this is something I’ve been looking forward to for about a year. And I’m beginning to see some glimmerings of ideas I can bringing home with me to sustain my thinking and learning over the next year or so, as I leave the professional work that has been an important avenue for my learning and growth.

Round 2A - so far much better!

I managed to get myself put back together sufficiently that they proceeded with Round 2- part A of my chemo on Tuesday. This time I think I (and the doctors) are much better prepared. My diarrhea has resolved itself for the moment, though they predict it may well return. But a little bit of lessons learned will tell you why I think it should go better.

1. I have sleeping pills this time around to counteract the steroids I have to take with my first part of the dosage, and so this week I am getting sleep, unlike last time. I’m rested, and feeling quite good.
2. They also noted that I was borderline anemic in looking at my blood tests from Monday, so I’ve been put on weekly injections of something to counteract that. What it seems to have done so far is get rid of the lightheadedness I’ve been experiencing, so that’s great!
3. If the diarrhea hits again, I’m prepared. I’ll hit it right away with the medication—no waiting or worrying about constipation.
4. I will also hydrate myself much better, and not just with water, but with something to replace electrolytes. I don’t care for Gatorade, but got a recommendation for a nice product made with natural fruits, with added potassium and sodium—called Recharge, and can be found in health food stores. Tasty, and it works.

I’m so put together that I’m feeling quite good about heading for Tucson in the morning, where I’ll indulge in several days of cavorting along with some serious thinking with my Fielding alums about what kinds of projects we might want to engage in together. It will be hot (predictions run from 99 tomorrow rising slowly to 105 when I return on Sunday). Supposed to be a nice resort, and they’re good people, so I’ll have a great time.

It’s nice to feel like me again! Still waiting for the hair to decide what it will do. It’s thinning every day—so it will probably pick a nice time in the middle of my Fielding workshop to all fall out. I’m taking scarves, and know I’ll be among friends, so not worried. Leaving the wig at home, even.

More in a few days.

Inch by Inch

Here’s the new “waiting for the hair to fall out” haircut. It’s basically the one I usually get before leaving for our 2-month cruise, just a little shorter. My hair is beginning to thin, so I am waiting to see whether “thinner” or a complete windage reduction package is what I’ll get. The nurses said “day 17” for hair fall-out and we’re now on day 19, so I’m just going from day to day. I am carrying a scarf or cap with me most places I go, just in case it decides to slough off while I’m in public!

I think I can now see that my diarrhea bout is improving…but it’s still slow. I am still taking medicine for the diarrhea, but my abdomen no longer yowls at me when I go over bumps in the car and getting about is a bit less painful than several days ago. It is still uncomfortable to walk—the jarring motion is enough for my body to complain. That said, I managed to get a gym workout in yesterday and went rowing this morning. Fortunately you sit while rowing, so all I have to do is move my arms and legs to keep up with the rest of the crew. It felt great to get some exercise and fresh air!

After consulting with the doctor’s office on Friday, I’m planning to start the steroids on Monday so that if the blood tests are ok, we can go ahead with infusion cycle #2 on Tuesday. I will see the doctor Tuesday morning to review the blood tests and confirm whether or not we proceed. I will also get some sleeping medication on Monday to hopefully help me combat the insomnia from the steroids, and if I can get my intestines back in working order, I should hopefully do okay.

In between all of this, Phil and I are working to put the boat back together and get it ready to launch. Phil moved the launch date back to July 8, both because he wants to be more sure how I’ve done with this second round of chemo treatment, and because we’re having trouble finding enough nice days to complete the outside work that needs non-rainy weather to be done. And I am also putting the finishing touches on the final leadership session I will conduct from July 11-14 and continuing to work on the transition with the new director.

I am scheduled to fly to Tucson on Thursday (returning Sunday), to spend a few days in a Fielding workshop for alums. This has been planned for a year, with reservations made before I was diagnosed. I’m looking forward to having a good time there, so I just need to gather my body together so it can enjoy itself too.

Slow Motion Recovery

On Monday, my doctor’s office and I agreed I needed to get off the heavy duty stuff and also get on medication to fix the diarrhea—the heck with worries about constipation! Since Monday I have been taking the generic equivalent of Imodium. That shift also meant I could go off the bland diet, so since I felt a bit better by Monday afternoon, I decided to join Phil and Shana for a Father’s Day celebration dinner on Monday evening at Ponti’s—a nice restaurant on the Ship Canal. Fortunately, there’s absolutely nothing wrong with my appetite, so I have been eating well.

On Tuesday we shipped Shana back to North Carolina—reluctantly for me, because she’s been such a trooper this last week, providing logical explanations for the various symptoms I seem to acquire daily and keeping me company as I went through my various procedures. She’s been a great source of support during this week.

I believe I am slowly improving, though the rate of improvement seems glacial. I think my body read the “side effects” list and has decided to try each one of them on to sit how it fits. So I’m in frequent communication with the doctor’s office about “where Kae is today” and whether the latest symptom is anything to be concerned about. One result of this episode is that I’ve become good friends with my oncologist’s nurse—not a bad thing. She too is a reassuring and practical sort, so I like working with her. It feels VERY good to be off the medicine that makes you woozy-headed. Hard to feel normal at all when taking things like that.

We’re headed to the boat again today to take advantage of reasonably decent weather for painting. I’ll admit when Phil first proposed it I had a negative psychological reaction, with an image of the long trek from the boat to that porta potty, and my many trips there last week, coming to mind. I think I can handle it—the idea is to get back on the horse once you’ve fallen off, right? Most of me is in workable condition, though a bit slow moving, so might as well be wielding a paint brush, and making progress so that we can actually take the boat out.

I’ll post more after we return.

Nose Dive

Sometimes you win, sometimes you lose. The latter part of this week is definitely in the “loser” category. On the Wednesday after my second infusion, Phil, Shana and I headed for Anacortes to work on the boat. Shana was inducted to help me get some wood preservative and then primer on the new wood we’ve had replaced on the boat, while Phil was up to finish putting the engine back together, get sails back on board and do the myriad other tasks that are always there to do as we get ready to leave.

Things went well Wednesday, with Shana and I getting our project area halfway masked off so we could finish it up Thursday morning and get going with the preservative. This went reasonably well for me even though I was experiencing some of the same lightheadedness I had felt the prior week after my first infusion. On Thursday morning, as I began working, however, I began experiencing bouts of diarrhea. Not a fun problem to have when the only bathroom you have accessible is a porta potty halfway across the boat yard. As the morning wore on, I finally had to give up and go prone—just short of completing the masking of my part of the project. Shana filled in, and Phil stepped in to take care of my part of the preservative treatment. They organized themselves well as a team and zipped around the boat while I lay in the aft cabin, mostly dozing, which seemed to keep the diarrhea down to a tolerably number of trips.

During the afternoon I connected with my oncologist’s nurse to describe the collection of symptoms I was experiencing and she concluded that they were all noted side effects of the chemical I had received on Tuesday. She figured they should subside as it passed through my system (usually in 48 hours, though I remembered that the dizziness had taken until Saturday of the prior week to disappear). I managed to get through the evening, and even to go with out to dinner with Phil and Shana that night, and to breakfast in the morning. But the symptoms were still there in the morning, so I returned to my bed and the two of them finished up the boat work.

Friday night my condition worsened in the middle of the night, when my system began waking me up about every 20-30 minutes with cramping. I also knew I was dehydrated because my throat was extremely dry every time I awoke, even though I was downing water each time. So Saturday, I confirmed with Group Health’s consulting nurse what I thought she’d recommend—get thy miserable self to Urgent Care and let them help stabilize you. Shana proved a trooper again, taking me to the hospital and keeping me company through most of the next four hours, while I received 3 bags of saline solution and a nice dose of morphine that instantly cut out the abdominal cramping. I was sent home with directives for a mostly liquid, bland (no fats, no dairy) diet while my system rights itself, and to also use some strong pain medication to both cut down the cramping and slow down the peristalsis in the bowels.

So now I am lying around somewhat woozy headed from the Percocet I’m taking, supping on chicken broth and other assorted soups, drinking lots of fruit juices and working my way through the occasional English muffin half, while watching Phil and Shana put away crab, corn on the cob, and other delectables.

More than once during these three miserable days I have asked myself why I’m doing this. I know, I know—I do know why I’m doing it, but am beginning to give some more serious though to whether I will do the final three rounds after radiation. Lots of research to do on that. I also assume that the doctors are going to be able to figure out how to get me through the next round with this violent a reaction. At least I get this next week off for my body to rebuild itself and get ready for the next infusion. And they did blood work on me yesterday, so we know what went down and how far as a result of this first found.

I am feeling much better today than yesterday, but still waiting for the diarrhea to start turning around and my body to right itself. I’ll keep you all posted.

Parker Island report and Infusion 1B

The weekend at Parker Island was wonderfully restorative. Friday marked the end of four nights of not enough sleep, with the crowning blow being Thursday evening, when I got a little over two hours’ of sleep in. Not enough to keep functioning, let alone heal. But by Saturday afternoon I had recovered and was able to get in a row both Saturday morning and afternoon and another on Sunday. You can see the wonderful water we had. The second picture shows the intrepid members of our rowing club, enjoying a beautiful evening of hors d’oeuvres by the water, including fresh oysters collected by one of our members.

The next big adventure was on Tuesday, when my daughter Shana accompanied my to the hospital for infusion 1B. Our big experiment on this time was figuring out a way to follow the recommendation of a second naturopath I saw last week, who suggested putting things on my hands and feet to “ice them down” in order to avoid problems with neuropathy (damaging the nerve endings, which apparently is a reasonably common side effect of chemo treatment). I had ordered a pair of special freezer mitts for my hands but they had not come, so we improvised for both hands and feet. A frozen pad of blue ice on both the soles and instep of my feet, sandwiched in between socks and a large pair of wool socks, worked beautifully. I think it took an hour for my feet to feel complete warm after we removed them. Our hands experiment was less successful—we had found packages of individual plastic ice cubes into which I plunged each had, with a cotton glove on my hand and then towels wrapped around the outside to hold them in place. You can probably imagine that I wasn’t going to be competing to win any beauty contests with this getup—I’ve included a picture for the full effect.

The other thing you’ll note in the picture is that I am sporting my pre-hair-fall-out cut. It’s similar to the cut I often get as we take off for the summer on the boat. Unfortunately, the weather is usually a touch warmer then than it has been this June, so I am really noticing the different in protection that even my short hair cut gives me. So I’ve been trying out the various caps that I ordered—again can’t say I’ll win any beauty contests but right now staying warm is taking precedence.

Rowing Camp in Canada!

Tomorrow morning I take off for Canada to join my rowing group’s annual “camp” which is held on Parker Island, a small island across from Galiano Island, part of the Gulf Islands east of the southern shores of Vancouver Island. Two of our rowing club members (Herb and Karen Berry) have a wonderful cabin together with a generous guest cabin, and each year our group gathers there to row as much as weather permits, cook and share meals, and enjoy the spectacular scenery. Here are 3 pictures that give you an idea of the landscape: four of us rowing a quad around an elegant schooner; cooking dinner, and the view from the deck of the Berry’s cabin.

I am recovering well from the infusion port installation (even lifted some light weights today) and will hopefully not have any problem holding down the bow of a boat, where I can row gently or even slip out of the rowing crew if I need to. I’m looking forward to great company and good rowing—even if the weather is not stellar (which it may not be). We’ve had quite a bit of rain the last couple days and more is predicted, though a nicer day may be coming Saturday. I return home on Sunday night, where daughter Shana will have joined us from North Carolina and will be spending the next 10 days visiting. A stellar weekend coming up!

Chemo Round A-1

After all the big buildup in my head, the actuality was tame. At least so far. I had two things done today. First was to have an infusion port installed—minor surgery. That process went very well, and my only result at the moment is a slightly sore shoulder where they made the incision and installed the port. One incision, with the port inserted just below my right clavicle. I’m supposed to take some care to avoid getting it wet for a few days, and watch for any sign of infection. Also supposed to take it easy with strenuous exercise, so I will skip rowing tomorrow and attempt to be judicious at rowing camp up in Canada this weekend.

The infusion itself went without a hitch. I felt nothing. They brought me breakfast following surgery, which I ate as I was getting started on the infusion. No nausea. No reaction. Just sat and read for a couple of hours while they let the two chemicals drip into me. The biggest impact has been the steroid, which I took yesterday, got another dose of today by IV, and then have to take again tomorrow. I had a little trouble getting to sleep last night, may again tonight, and tomorrow. Then I’m told I may feel a let down when I come off them Thursday.

Now I am to watch for any symptoms. The chemicals I’m taking are apparently pretty good about not causing nausea. I may experience fatigue, especially in later rounds as my red blood cell count gets lower. Might have some arthritic-feeling aches and pains off and on. We’ll just have to see. At the moment I feel a bit like an idiot waiting for a train wreck that didn’t happen, since I feel perfectly normal. Actually, that’s a very nice feeling to have.

I had two drugs today. Next Tuesday I return for round A-2, in which I get just one drug. Then I’m off until round B, which will start on June 24. So imagine and encourage all those chemicals running around in my body to do their job well, gobbling up the quick-dividing cells, the fastest of which are cancer cells, if there are any. Ask them to minimize the damage to all the other fast-multiplying cells while they’re at it! My hair may apparently stick around for a couple of weeks more, so I won’t get it cut short until next week. I have ordered a bunch of hats, caps and scarves to play with, and also have a wig that I am going to have my hairdresser style a bit. So we’re off and running.