Holiday changes & New Year Travels

Sorry it’s been so long since I posted. I'm sharing a couple pictures from our New Year's celebration with Joahnna Rivera's family (Guy's fiancee). The first is Joahnna's mother Carmelita (known to most as Millet-accent on the second syllable). The second is Guy and me.

Our Christmas plans for a nice family time in Morro Bay were upended when my stepmother had a stroke the Monday before Christmas. She was in the hospital four days, released on Christmas morning, so we managed to get everyone together at my parents house in Carpinteria for a nice Christmas dinner. The drive back and forth from Morro Bay was over two hours each way, however, so I only got down to see them twice, and the rest of the group just on Christmas day. Needless to say, we had a few anxious days, but she is recovering well, with the primary damage some trouble in retrieving the words she wants. Around the edges, we had a nice family time in Morro Bay, with Phil’s brother Howard joining us, along with Shana (in from North Carolina) and Guy, together with Joahnna and her son Zach. Fun having a teenager around again! (that would be Zach, who is 16)

After Christmas Phil and I drove to Long Beach to visit our friends Ken & Jean Frost, greatly enjoying their charming home on the Naples community canals. Then we drove back up the highway to Santa Clara to celebrate New Year’s with Joahnna’s family. We met lots of aunts and uncles and are working to get names fastened to faces so we can recognize them at the wedding. We have now been inducted into how one extended Filipino family celebrates New Year’s—with lots of family fun.

After three days in Santa Clara, we then spent three days driving home, arriving in Seattle on Sunday January 4. On Monday I turned around and flew back to Santa Barbara in order to participate in some workshops at Fielding Graduate University (where I did my doctorate). They continue to hold workshops that alumni can attend, and I enjoy dipping into that intellectual atmosphere once a year. I’m staying at my parents and going back to Seattle nest Monday, so it’s nice to have a bit more time with them too.

I continue to shed side effects a bit at a time. My appetite and taste buds seem to be back to normal, though I may have to reacquire a taste for red wines, I’m finding. My hair is very gradually beginning to thicken up a little. I reacquired the swelling in my legs that I experienced while on the boat this summer (I think for the same reason—a lack of activity), and am working dutifully to increase my exercise by walking and doing yoga, hoping that that combination will diminish it. That’s my primary issue right now.

I have my first followup CT scan scheduled for January 26th, with a debriefing by my radiation oncologist on February 3. That’s the date I’m looking to to be certified to celebrate. So hang on with me as I patiently wait to get there.

Relief!

My nausea finally began to ease last Saturday, and each day since then I’ve felt a little more normal. We’ve not stopped the diarrhea yet, but it definitely has a crimp in its style, and by the weekend I expect I’ll be back pretty close to normal. So Christmas dinner tomorrow will even taste good! I’m not ready for wine yet—that is still tasting a bit sour. But I’m close.

Off to complete the rest of this holiday vacation. I hope you have a wonderful Christmas day and lovely restful days to follow.

Exit with a Whimper, not a Bang!

I had expected to have a grand celebration following my last infusion. I did get a small one, as the infusion center staff sent me out the door with a clever song about the end of treatment, sung to “Hit the Road, Jack.” But the patient was not feeling celebratory. My struggle with nausea and diarrhea continued through Monday, and has stayed with me so far this week. In fact, I learned that the vaguely “off” feeling I’d been experiencing, with no appetite for food or much of anything else, is also termed nausea.

The hospital staff gave me a new medication to take for the nausea, which I can’t say appeared to do much, though I dutifully took it for most of the three-day course I was given. It was treatment designed by a masochist…bitter pills that had to be dissolved on the tongue, and took 15 minutes to dissolve. What a nice treat for someone experiencing nausea!

Somehow I got myself and our trip goodies packed, and we bundled ourselves into the car on Tuesday morning to head south. After some bad weather Monday that had tied the Portland freeway in knots, on Tuesday we were fortunate to get a sunny day and good roads most of the way to Eugene, our first stop. From there we stayed on I5, rather than going to the coast, because we had a snow storm about 12 hours behind us and figured the quicker way was better. On Wednesday we got over the Siskiyou’s with dry pavement and sun most of the way, and on Thursday we landed safely with friends in Tiburon, so one more trip south made safely!

I shared in some of the driving, but mostly just nursed my poor body along, trying to doze when I could and stuff a bit of food into it periodically. Everything tastes a bit like straw, so that’s much easier said than done. Not feeling well is unfortunately a very self-centered activity—and I’m quite tired of focusing on me. I haven’t exercised or done much of anything for the past week. I’m more than ready for this to pass. I also don’t know if it’s related, but the onset of these current symptoms occurred just after I ran out of my Chinese medicines—and unfortunately the replacement batch did not arrive before I left for California (the herbs are ordered out of San Francisco). If it’s more than a coincidence, I certainly have a lot more appreciation for what they’ve done for me!

So knowing that it will pass is the only thing that pulls me forward. No more nasty chemicals will be dumped into me, so sometime in the next week this should begin to let up. I’ll post again when I can see the light emerging.

I Had to Have One Last Adventure!

Just as I was about to sail through the week following infusion #5, my body decided to give me one last adventure—with a new twist!

All was well this week up to Friday, looking like the pattern was going to follow last week, with no real side effects. I’d been feeling a tad “off” but other than that, had energy (I took our club single out to row on Wednesday morning, getting it in and out of the water by myself), and was focused on getting everything ready both for our annual egg nog party tomorrow and our departure for California on Tuesday.

I still don’t know what happened to trigger it, but yesterday afternoon my system fell apart. It started off by having me upchuck my lunch, and then anything else that might have been hiding in my stomach, and then expanded with rounds of diarrhea—so I was loosing liquids at both ends, with no means to stop it! I couldn’t keep any medication down to halt the vomiting or the diarrhea. The nausea and vomiting were new to me in terms of dealing with it--I've had very little of it and nothing this serious. I figured the only solution was to get to the urgent care center so they could stabilize me intravenously—which the consulting nurse confirmed. So Phil took me there about 6:30, completing the opportunities for each member of the family to accompany me to urgent care over the course of my treatment.

Three hours later we left urgent care with me hydrated by saline, my stomach calmed down with medication to stop the nausea, and the doctor puzzled by just what had instigated my symptoms. He wasn’t sure it was the infusion (he thought it was a bit late in the week). They also did blood work to check me out, and he said my blood count was actually pretty good, and I hadn’t lost much in the way of electrolytes (I think I avoided that by getting to them fairly early in the game). So perhaps it was something I ate that triggered the whole thing (I ate out for lunch), and then my system simply couldn’t put itself back together. Wouldn’t it be nice to know so I could try to avoid repeating it!

Today’s task is to gradually put some nourishment back in my system (back to broth, rice, and maybe later even bananas and applesauce!). Phil’s a little anxious about the idea of taking off in the car next week with the potential for me to “go south” somewhere along the way—but I figure there are emergency rooms along the way and we can handle it. It will all pass (I do seem to come back pretty quickly) and my system should start getting into recovery mode somewhere around Christmas.

Overall a good week

I’ve now completed infusion #4, and managed to get through the week just about the same as the week before. I got the infusion on Monday, and on Thursday experienced another round of “profound” tiredness—that is, nearly any exertion does me in. We were hosting Thanksgiving, so I had anticipated this possibility, and had my cranberry sauce and pecan pies done ahead. Others were bringing side dishes and my only task for the day was to make stuffing and get the turkey in the oven. This I did with a lot of sitting down in between rounds of preparation. A little nap just before our guests arrived, and I got through the day just fine.

I have also not had diarrhea this week either. I am puzzled, and obviously quite pleased. Haven’t really any great thoughts about why I should be responding differently now, except that I’m back on a complete fiber diet, so perhaps am giving my system a bit more to help “plug it up.” I also had a cancer sore develop this week, and my memory of last summer’s round of this was refreshed. That too has gone better than before. I’ve attacked it with multiple rounds of Oribase dental paste and frequent visualizations of vigorous little healing blood cells smoothing out the tissue and cleaning up the bad stuff. They’re inside me stitching everything back together—and what do you know, it looks like it’s turning around!

We’re off to Lopez to spend a few days there with our friends Nancy Taylor and Fritz Levy. We’ll be back just in time for a flurry of activities before the holidays, including my last two infusions, and our annual eggnog party on the 14th. Fortunately, Guy & Joahnna have decided to take the time to join us for our party—so I know everyone will enjoy celebrating with them. We’ll leave for our Christmas trip south on Tuesday, December 16.

Surprises can still happen!

I’m coming to the end of the week following infusion #3 in the current series of 6—this one was the double infusion with a cocktail of two chemicals. I’ll have infusion #4 with just one of those chemicals on Monday. And the surprise? I’ve made it through the week without any diarrhea! I’ve been waiting all week for it to happen, and it looks like I’ll get a pass this week. I don’t expect to be that lucky next week. For some reason my single infusion shot causes me more problems than the double one.

Not that I’ve gotten away without consequences. The double infusion is where I get to take steroids to help counteract nausea. And that they seem to do pretty well—but they also make me hyper. Which I counteract at night by taking sleeping pills—it’s a never-ending circle. Apparently you also often feel a let-down when coming off the steroids, and that I’ve felt since Thursday. I’ve been quite tired, finding it difficult to do my usual physical activities. It’s not “I need a nap” tired, but exhaustion on exertion. So when I need to make the trip from the basement to our second story, I sometimes need to pause on the main level before tackling the second set of stairs. Yesterday I had to truncate my walk, staying on flat ground and eliminating the hills and stairs that I usually include. The tiredness is still with me today, so I’m beginning to think it’s not only coming off the steroids, but a low blood count. I’ll let the nurses know that on Monday when I go in and see if they want to do anything about it, or just let me slug on through. After Monday, only two to go!!

The picture I’ve posted is from last Sunday’s Memorial Row celebration for my rowing coach, Charley McIntyre. I’m waiting on the dock for my rowing partner, wearing one of the bright orange shirts we had made for the occasion. You’ll note a couple boat-loads of orange shirts in the background. We had over 40 boats and close to 100 people come out—a very nice celebration.

Birthday trip for my Dad

After my second infusion last Monday, I boarded a plane Tuesday morning to go to Carpinteria to celebrate my dad’s 93rd birthday. I had some concerns that I wasn’t going to know how my system would be doing, but based on the hope that I’d be doing better this second time around, wasn’t unduly concerned when I made the reservations a month ago. And indeed, my first week into chemo seemed to go reasonably well. My travel plans included four days with my parents, and then stopping in Santa Clara over the weekend to spend a couple days with son Guy and his fiancée, Joahnna.

Well, my body had a few surprises for me. The flight down went fine. And the birthday party was enhanced by the fact that Guy flew his plane down with Joahnna along, to join the birthday celebration. As part of that celebration, Guy was to take my dad up for a birthday flight. All went well for that part. Guy & Joahnna arrived shortly after I did, at which point he took my dad up for a 30 minute tour of the area. After they returned, we all went out to my parents’ house.

During the afternoon I began to feel a little unsettled, and while running an errand with Guy, ended up loosing the banana I had just eaten (after which I actually felt much better). We returned home, but then my body gifted me with earlier onset of diarrhea than I’d yet experienced—just one day after the infusion! So dinner was out for me—I didn’t feel like eating and didn’t want to be dealing with my body’s needs in a restaurant. So Guy & Joahnna went off with Alton & Dene to celebrate, while I curled up to try to stay awake through enough of the election returns to see what was happening. I made it to 7:15 (by which time the trends were clear, at least), and then was off to bed.

I spent the next two days being a somewhat miserable guest, putting myself back on the BRAT diet to try to tamp my system down. It finally took a dose of the most powerful stuff I’ve used yet, Paragoric, to pull my system back onto the “sort of normal” path, finally achieved Friday, in time for my flight to Santa Clara.

The flight itself turned into an adventure, after the commercial flight I was scheduled to take on USAir ended up delayed, without any explanation provided, and no agent to talk to, for a good 25 minutes past its scheduled departure time. I was flying to San Jose via a connecting flight in Las Vegas with 25 minutes between flights, so it was obvious at that point I would not make the connection. I had no way to gauge what might happen to me if I went to Vegas—how long it might take me to find another flight to get to San Jose or even if I would be able to do it that night. So I called Guy, who was delighted to take off work and fly down (again) to retrieve me. My treat ended up being a night flight back to San Jose in his Piper Commanche, which was really fun. Nice to have a pilot in the family when an airline decides to through that kind of mess at you!

I had a wonderful weekend in Santa Clara, and arrived home Sunday evening. I’m now feeling pretty much back to my current normal, able to eat the low-fiber diet I’ve been maintaining, which is MUCH nicer than Bananas, Rice, Applesauce and Toast. Back into my normal exercise routine, and energy feeling good. So I can gather myself up and get ready for the 3rd infusion coming up next Monday. Hair’s still with me—hasn’t started to drop out yet, but I’m expecting that shortly.

The somber events of the week are two celebrations of my rowing coach, Charley McIntyre, who passed away on October 29th. Though he was 85, it wasn’t his age (he was very active, and still rowing a couple months ago, as well as coxing our quad about a month ago). It was my good friend cancer (in his case, lung cancer). In addition to a service and reception on Friday, the more meaningful part of our celebration will be a memorial row we are doing around Lake Union, Portage Bay and the Montlake Cut—all areas with facilities and rowing lanes where Charley was active in his long-time support of the rowing community in Seattle. He taught me to row eight years ago, and through that helped me find a wonderful new way to be on the water, as well as a great group of people to row with. I will miss his running narratives and even his bad jokes, as well as being amused by the unsolicited advice he tended to give to passing rowers. Here’s to Charley, the most graceful rower I’ve ever seen!!