It’s Saturday, 296 days ATN and 12 days to surgery.
It seems just like yesterday I was still dealing with the side-effects of radiation and wondering whether I’d be able to make any of the trips I’d been planning. But here we are nearly two months after the last radiation fraction and less than two weeks before surgery. It’s been an eventful time and I’ll try to get you at least partially up to date…
The Surgeon, Part Deux
I guess we’ll start with the meeting with the surgeon. I’d met with him back in July – in fact he was the first of what I’ve come to think of as my cancer care team that I met. This particular visit was more or less the same as the one in July and it seemed mainly to see if I had any questions, and to schedule the surgery.
One question I did have was whether his July assessment of “full cure and full function” still held. He paused a bit when I asked and said well, he would be removing a fair amount of the rectum and so some changes wouldn’t be unexpected. He said this is mostly in the category of needing to find a toilet more frequently – although this isn’t the case with everyone. He pointed out I’d still be able to hold things in but shouldn’t expect to go as long as I normally did after getting an urge to go. To be fair this is more or less what he said in July as well. What I’ve come to learn over the past few months is that with rectal cancer the all-important thing is to preserve the sphincter. In fact I read one paper from the early days of total neoadjuvant therapy (what I’m doing) that praised it as a “sphincter-saving” treatment. If the sphincter can’t be preserved you end up with a colostomy. And while that’s not the end of the world it can be life altering.
So after going over that bit of potential side-effect, the surgeon brought up well the tumor is gone as far as the MRI is concerned so a natural question is whether surgery is called for anyway. I decided to throw the question back at him – he’s the expert after all! And asked what’s the chance there are still viable cancerous cells hanging around. He seemed to like this (since apparently he figured he wouldn’t have to argue with me too much), and said that often when they do the pathology on tissue removed from a “gone” tumor they do find viable cancer cells. In those cases if you wait a few years the tumor would be back. Which is why the standard of care is to remove the tissue where the tumor used to be even if it seems the tumor is gone. The surgeon mentioned that if I were 90 or for some reason not expected to live long enough for any remaining cancer cells to have an appreciable effect we’d have a different discussion. But he apparently thinks I’ll live a lot longer than that. (I did inform him that I was planning to get hit by a bus in the next few years. The problem is finding a bus driver willing to run me over. Apparently there’s all sort of indemnifications they want, and of course I’m picky too. I want one that’s certified to give me a quick and painless death. No payment or indemnification if it hurts or I linger! JT is skeptical of this plan and has said surgery is the right track.)
So having decided that we were going forward, there was the question of when. I mentioned I was on a plane to Honolulu the next day, then planning to go to Vegas for NAB in a week and a half, and there was a celebration of life I really wanted to attend a month out The surgeon initially suggested a time shortly after I was back from NAB. He said I’d still be able to go to the celebration of life though I’d have an ileostomy. Given the choice I wasn’t too thrilled with that since the celebration of life is at a winery and I do want to imbibe without worrying too much on how my re-plumbed digestive system is working. So we settled on the week following the celebration of life. This is a bit late and on the outside window of when the surgery should occur following the last radiation fraction. But the surgeon seemed OK.
For those of you wondering about the ileostomy, I’ll have one post-surgery. During the surgery the (previously) tumorous part of the rectum will be removed and the two ends will be stitched together. Apparently this is called a resection. In any case its a good idea to let that heal before putting it back to use, so a temporary ileostomy will be done which brings the lower part of the small intestine to the abdomen (a stoma). Poop is delivered to a bag. This will either be a really good or really bad time for extended road trips.
So the day after meeting the surgeon I was on a plane to Honolulu. I was somewhat kicking myself for not planning the flight right after meeting with the surgeon, since Palo Alto Medical Foundation San Carlos is right next to the airport (and twenty-some-odd miles from home!). Something to keep in mind the next time…
Now to put things in perspective, this isn’t a vacation trip to the islands. I grew up in Honolulu so this is about family and friends. (And of course food.) This particular trip – the first in nearly two decades – was to see my father, who was declining mentally and physically. We were told that if we wanted to see him we should do so sooner rather than later. I was originally going to be there the same days as my sister who was flying in from the mainland as well – until the surgeon decided I should pay him a visit during that time. As it was I overlapped with my sister and it was good to see her, if for just a few days.
To cut to the chase, my father passed a couple weeks after I left Honolulu. I was able to visit with him every day but one while in the islands, and during each visit he mostly slept with brief moments of semi-wakefulness. It’s not clear he knew who I was (due to advancing dementia). I didn’t ask if he knew who I was, and he never said my name. It really didn’t matter to me though. At one of his more lucid moments I asked how he was doing and he said, “oh, not so good you know…” Which apparently isn’t what he was telling my brother or sister. It’s something of a mystery why he’d tell me that. I have a sneaking suspicion he thought I was someone else. In any case, whether he knew I was there or not, I’m glad I was able to make the trip and more so that he is in a better place now.
Since I only had five days in Honolulu I didn’t tell a lot of people I was coming. A high school friend, a cousin, and an aunt I’m particularly close to. Even with that small set every day had something going on!
I’d been hoping to get together with my brother and sister and as luck would have it we got together for dinner at the (now-vacant) family house the day I arrived. I’d originally planned to visit my father first, but an hour plus wait at the car rental put an end to that. So it was a drive to Waikiki to check in, then a drive back to the house which is in the direction of the airport. Along the way I stopped by Koala Moa to pick up a huli huli chicken plate. Huli huli chicken was one of several items on my to-eat list for the trip. I have fond memories of it from fundraisers and state fairs and hadn’t had it in something close to thirty years. It’s basically chicken marinated in a teriyaki-like sauce and then broiled over kiawe wood. The kiawe is the all-important bit that gives it a distinctive taste. I once had “huli huli” chicken at the Market Street Cafe in the California Hotel in downtown Las Vegas. Downtown Las Vegas is a popular tourist destination for Hawaii locals so I was hoping to find some authentic Hawaiian food. What arrived at the table was anything but. It may have been marinated in something like huli huli sauce but that’s about it. Wet and soggy, it had a stronger resemblance to shoyu chicken than anything else…
To anyone visiting Honolulu I strongly recommend the Koala Moa chicken plate lunch (they’re not allowed to call it “huli huli” for trademark reasons, but its the real deal.) I got the Jumbo Plate with a whole chicken since I figured I’d share with my siblings. The woman at the counter threw in another half chicken gratis. Let’s just say I was eating chicken for the next few days. Thankfully it was great chicken that lived up to all the fond memories I had!
The next day, after visiting my father, I thought I’d head over to the Shirokiya Japan Village Walk in Ala Moana Shopping Center for lunch. Only to find it closed, apparently a casualty of COVID and/or a rent dispute. So Plan B was Don Quijote, a department store I’d heard about that apparently succeeded the Daiei-Holiday Mart I remembered. They have an interesting assortment of Japanese products and a decent food court – at which I got a spam musubi (I was saving room for dinner…) On the way back to the hotel I stopped by Leonard’s Bakery to get a malasada. I have memories of stopping by Leonard’s to pick up some freshly fried malasadas on the way to my grandparents’ house in Kapahulu. The malasadas I remember are plain, fried dough (what is now called the “original”), though now they’ve got various varieties. Still as ono as ever. If you want some, don’t go to the bakery on Kapahulu Avenue though. There’s no parking and you’ll likely have a rather long wait to get your order filled. Instead find one of their malasada-mobiles.
Dinner was at my aunt’s. My uncle had sadly passed away late last year (both my aunt and uncle stayed with me for a few months back in 2017. Despite the circumstances I enjoyed their company and my aunt and I still keep in touch regularly). But I got to meet my cousin’s wife and their son Ethan (who was intent in teaching me the proper way to drink from a sippy cup). And a rather rambunctious boxer named Twinkie. And knowing how much I missed local food my aunt provided Zippy’s chili and fried chicken (for those of you headed to Honolulu, add those to your dining list!), as well as lau lau and kalua pork. Thankfully I’d lost a little weight during radiation therapy or I’d have had to buy new pants while in Honolulu. Around midnight I figured I should head back to the hotel, but my aunt said no to stay a little longer and made some coffee. The next thing I knew it was 4 AM. Which is 7 am Bay Area time. Thankfully there wasn’t much traffic and I made it back to the hotel OK. I do miss those nights when my aunt and uncle were staying with me and we’d end up talking story in the evenings.
The next evening was dinner at another of my aunt’s & uncle’s house – my father’s side of the family this time. I’d mentioned to my cousin I’d like to take them out to dinner (she and her family visit me in the Bay Area now and then). Well the next thing I know we’re having dinner at her parents’ house, her sister’s family is coming too, as is another of my cousin’s. But that’s all because, as my cousin put it, they wanted to keep it small (the Minakami family is quite large these days and there’s a whole generation I haven’t met yet. One of these days…) Yet another evening of good food and catching up with relatives, many of whom I hadn’t seen since 2000 or so.
The next day was a Saturday and I met up with a couple high school friends at Ala Moana Shopping Center. My friend suggested we meet at Long’s, since it is one of the few places that’s been in the same spot for the past few decades. Except that the mall around it totally reconfigured itself so it still took a little bit of exploration to find it. We quickly ended up at Foodland, which is a supermarket along the lines of Safeway or Ralph’s. A supermarket seems like a strange place to spend an afternoon but in Hawaii they’ve been upgraded to include wine bars, food courts (not to be confused with delis, which they also have), and other establishments tucked inside. We enjoyed a glass at the wine bar, which had a surprisingly good selection (I don’t associate Hawaii with wine so my expectations were admittedly low).
It was soon dinner time and we decided to go to…Zippy’s! During my last trip in 2003 I stopped by Zippy’s at least once a day to get a bowl of their famous chili with rice (topped with cheese and onions). There’s no such thing as too much Zippy’s, though apparently I can’t eat as much as I used to twenty years ago and only made two visits during the trip. All three of us ended up getting the plate with chili (of course!) and korean fried chicken. Another of our high school group also joined us while we were there. It’s funny how the years can melt away and you feel like only days have passed since graduation. Everyone is still the same. Just a little different.
And then it was Sunday, the last full day in Honolulu. I was meeting my brother at the family house later in the day to do a walk-through (since the plan of record is that I’m still buying it). He and my sister in law were bringing dinner, so I figured I’d bring dessert. I have memories of the Dee-lite bakery guava chiffon cake and even tried my hand at making it for Caper’s 16th birthday (as well as a lilikoi chiffon cake for JT’s birthday). While Dee-lite is gone, Liliha bakery also makes one so I headed to the one at the International Marketplace a half hour after they opened – and they’d already sold out of guava chiffon cakes! Fortunately I was able to snag the last lilikoi chiffon cake. The rest of the afternoon was spent with a visit with my father and an aborted trip to Pearl Ridge shopping center (which was closed for Easter Sunday). Then it was over to the house. It’s in need of a few urgent repairs (which I’m very thankful my brother will help with since getting on a plane is something I probably won’t be doing for several months). There’s also a laundry list of updates that can wait until I’m able to make it back. Like replacing the carpet in the living room with hardwood. (I thought it was the original 50 year-old carpet, but I’ve been assured it had been replaced at some point. Apparently with the same type of carpet.)
The flight back home on Monday wasn’t til 7 and I had until 5:30 or so to return the car. I didn’t have much planned – a last visit with my father and then maybe browse Marukai Market or Don Quijote. Instead of shopping I ended up spending the afternoon with my aunt at Kahala Mall – she had a frozen Goteborg sausage for me to bring back to the Bay Area so I could make Goteborg musubi. I didn’t even know about Goteborg musubi until I had it on Kauai in 2016. It’s a Kauai thing that goes quite a way back – probably to the plantation days. Goteborg is a Swedish sausage and you wouldn’t think it’d be hard to find in the Bay Area, but I haven’t found it. Except at the Marukai in Cupertino – which flies it in from Hawaii. Hormel even has a special Kauai label for their Goteborg sold in Hawaii. (How Goteborg got to the islands I have no idea. Hawaii’s population is quite varied but I’ve never heard of sizable Swedish population…)
All too quickly the afternoon was over and it was time to head to the airport. It’s times like this I wish I’d booked a longer trip and could’ve spent more time with my aunt and other relatives.
But it wasn’t quite time to get on a plane to the Bay Area yet – I had one last set of relatives to see before leaving the Islands. When booking the return flight I had an option of a direct flight, or for about $15 less one with a three hour stopover in Lihue. My mother’s side of the family is from Koloa and I still have some relatives on Kauai. I figured maybe we could meet for a couple hours. And as it turned out I was greeted at the airport by an aunt and uncle, as well as one of my cousins and her husband. We ended up at a Burger King close to the airport. (The last time I was on Kauai in 2016 we got together at a McDonalds in Lihue. One of the nice things about Kauai is that it still has the old country feeling to it. But your choices get limited in the evening. And there’s still no Zippy’s…)
And eventually it really was time to take a red-eye back to the Bay Area. And guess what? For dinner that night I defrosted one of the pints of Zippy’s chili my brother and sister-in-law brought to Las Vegas in December. You just can’t get too much Zippy’s chili….
A special Thank You to everyone who welcomed me to Hawaii!