Lots since the last...

 

September was nice. My brother was here until mid-month, always a pleasure.

We biked to the Nat’l Nordic Museum in Ballard, via the bike trail and Locks, Goldilocks biking weather, although it started to rain as we got off the ferry and got drenched on the final leg home.

We spent some time with family in OlyWA. Danced at the yoga center. Much, much garden work, harvesting, prepping freezing canning & drying food. Put up 13 gallons of berries in addition to what we ate.

The bloodwork orders for the end of the month were mix-up, so we rescheduled. With the bloodwork finally sorted, I had a draw. Got hearing aids (Bluetooth for audiobooks, OMG!) and they placed gold markers in my prostate (to avoid confusion, different medical professionals for each), and that was just Tues-Fri of Week One.

Week Two: Had my eyes checked, got acupuncture, received approval for acupuncture as part of Integrative Health at Fred Hutch, and celebrated the end of the week with a CT scan and MRI at UW Medicine in Montlake.

Week Three: Acupuncture

Week Four: Acupuncture, get my leg form made, tattoo markers drawn and an MRI before we start radiation sessions. Daily radiation sessions (sans weekends and holidays) begin Oct 25^th, and it’s not as simple as I thought, need at least 150 mL of liquid in bladder. I figure it out, but it gets harder with more radiation sessions. Went to the Silvertips hockey game in EvWA.

Week Five: Five days of radiation at The Hutch, to clarify, that’s Fred Hutch and not the gift store is my hometown.

October proved useful for finishing up some outside projects. We managed to tune up quite a few things in the yard before the cold, wet & dark of winter descends upon us.

November was filled with radiation every single day, except weekends and holidays. And the side effects began to manifest that first week in November; low energy, getting every hour up to pee (all night long), having trouble maintaining 150 mL of liquid for the procedure w/o having to pee was an issue, to name a few, between the lack of sleep, side-effects of radiation and the prednisone, I wasn’t my usually cheery self. At the weekly check-in staff added a few meds to help.

We had dinner out, a great vegan Thai place, then went to a Kraken game and stayed at the Behnke House, Fred Hutch’s ‘hotel”, not too far from their campus, in the South Lake Union neighborhood.

Regarding transportation, our original plan to ride the bus was scrapped after one visit. We quickly realized that the journey required a passenger vehicle, as I had to drink lots of water and had to pee roughly every 15-20 minutes. I stashed a few small jugs in the car, just in case. They came in handy more than once.

We used the valet parking service at The Hutch. They are kind & quick, and it’s free for anyone receiving cancer treatment, and you’re not allowed to tip, they won’t take the money.

We had a playlist for the drive and started every trip with Cabezon by The Red House Painters. We’d go directly to the campus, takes about 20 minutes from the ferry.

A friend filled in as driver a couple of times. That was hugely kind of him, as I was not my best self. I yelled, from my friend’s car, at a pedestrian who was blocking traffic by not using the sidewalk, not my finest moment.

After giving your vehicle to the valets at Fred Hutch, you go to Oncology and check-in. They made a card for me to scan, so it was very easy. We’d talk with other cancer folks and their support, and drink water until the staff called me for the radiation session. We had the waiting room in a buzz of conversation, most days.

When they call you for your session, you go back to a changing room (they have half-a-dozen), strip down to your sox and t-shirt, don a gown, and wait to be called into Bert or Ernie, the two radiation rooms. My partner goes with me. I bought some unusual socks to wear each day, for the 28 sessions, e.g., sox with dogs on them, sushi sox, pink flamingos, you get the idea.

You get called into the radiation room, lay on the table, it’s covered with a sheet and the blue leg form they made during the first visit. The form holds your legs still. You split your gown, sit down on the table and swing your legs up, trying not to flash the techs. They cover your legs with a heated blanket covering up to your waist, They pull your gown up to reveal the tattoo markers on your stomach and each hip, squirt some heated jelly on your belly, and ultrasound you to check your water level. If you have enough liquid in your bladder, they line you up to do a 1-minute scan with the robotic, 4-arm, thingy that swings around the table’s axis. Then they do a final alignment and leave the room, closing a very thick door. You lay still, holding a foam donut, the robot begins to whine and click, then turns a complete revolution with all four arms, while 70s R&B plays in the background. You can sing along, but no toe-tapping. The robotic arms turn for one pass then reverses direction for a second trip, finally the arm stops, makes a few more clicks, then the really think door opens. You have to pee badly. The techs come in. You have to pee badly. They lower the table down. You have to pee badly. They put RoboZap (my name, not theirs) back a bit, and understand that you have to pee badly as you dart from the room, throwing thank yous over the shoulder, while you grasp your gown so as not to flash the crew (no one needs to see that) and dash for the bathroom.

And, in my case, you get to do that 28 times.

My partner would get the car as I dressed. On the way home we’d stop for soup at Met Market, where you need a daily-changing code for the bathroom that’s almost always occupied. The tomato mixed with ½ & ½ with the mushroom is quite good though. And once a week, if we had time, we’d go to Top Pot for a chocolate glazed or a Bavarian crème, because all the cake donuts were usually gone. Now remember, I have to pee about every 15 minutes for the next couple hours, due to the 40+ oz. of liquid I’ve had since 7 am, and the irritation caused to much of my nether region as a result of being regularly blasted with radiation.

My partner figured out insurance coverage, handled medical stuff, including the meds and supplements, and took care of the underappreciated, yeoman tasks. She is a brilliant advocate and has navigated all with skill and alacrity. I am lucky guy!

Then I got a rash on my back, so staff added a few more meds to help. By the time the Thanksgiving break arrived, I rattled for 30 minutes after taking my morning doses.

We are lucky enough to have lots of extended family in the area, so we enjoyed two Thanksgiving dinners. The gathering sizes are getting smaller, but it’s so nice to visit with everyone, for some, it’s the only time we see them. Needless to say, we really enjoyed both gatherings and we’ll have to figure out how to plan to gather more often.

Radiation was completed on Dec 5^th. We made orange-cinnamon soap for the techs, nurses and doctors who took such good care of us. They are an amazing group of professionals who put the patient first.

Now, the side-effects from radiation begin to wane, I’ve had a few nights recently where I had 3-4 hours of uninterrupted sleep.

We saw a physical therapist and worked with the pelvic floor muscles to speed my recovery, super helpful, immediate results from her knowledge. And I have some exercises to add to my routine.

We had lunch at The Athenian in the market. I went there a few times with my brother and sister-in-law when I first came to Seattle in 1985. It is still a great place, food is good, with quick and friendly service and the view is one of the best in Seattle!

My partner is helping a family member as I type. It’s been blowing like crazy here so the boys and I have yet to make it outside for a walk. But I see a shaft of sunlight peeking through and the trees have stopped their shaking and shedding of big branches. It’s time to get outside.

More to follow…

Onward...

 

Last week was busy! Doctor appointments, treatments adjusted, family arriving, Tennis and much to do in the garden as more veggies ripen. Plus, I bought a guitar online, that I did not like at first; comes with a gig bag versus a case, you have to install your own strap peg and the sapele wood body is nice, but it does not produce the warmer sound you get from mahogany. Nonetheless, it’s a very nice instrument, does the things I want it to do, the price was right, and, after playing it both unplugged and through the amp, I like the guitar.

As I mentioned in the last post, we had our first appointment with our medical oncologist at UW. He’ll be running the show. Because my insurance company requires pre-approval for the prescribed meds, it looked like we were going to have to come back another time to get the meds. Fortunately, Dr. Y prescribed Bicalutamide & Prednisone so we could start the hormone treatment.

We returned to UW on Friday for a shot of Lupron and a script for Abiraterone (replaces the Bicalutamide). And we had a DEXA bone scan later that day. Of course, any trip to Montlake wouldn’t be complete without a trip to Agua Verde Café & Paddle Club. Our friends owned the place years ago. That’s when we first discovered the Mangodilla (mango, cheese and chilis made quesadilla style) and kayaks and we were smitten! We continue to go for the great food, stellar location and its proximity to the UW facilities. And the fungus has been abated, thank God!!!!!

After meeting everyone on the care team and setting a strategy, I am sleeping better, I’m more relaxed and I’m less anxious about the future.

We’re still picking and processing in the garden; several gallons of black & blue berries have been frozen so far. They will taste good in smoothies all winter. We have more cukes to pickle. The plums are coming in. We’re splitting, pitting and dehydrating those. Apples are looking good. We have enough for a few jars of apple sauce, that is if they don’t get eaten first. They are tasty! And the melons are close to being ready too! And we are looking forward to corn, beans and squash soon.

The menus are getting dialed in. The halibut tacos last night were better than any in recent memory and a few nights before we created our own version of veggie enchiladas that will be featured regularly at the house.

Yesterday, we dusted off the golf clubs and played nine at Meadowmere. I was encouraged that I did not completely suck, averaged six strokes per hole (except when I didn’t), used the same ball for 9 holes, and found a few stragglers for the bag.

We continue to focus on the positive, host family & friends, walk the dogs, do yoga every night, lift weights daily, eat from a variety of tasty, nutritious food, and we’ve had a couple of fun rounds of disc golf at Battle Point. The anxiety is subsiding. And we are grateful for everyone and everything in our lives.

So it begins...

27 Aug 24

Made some great bread & butter refrigerator pickles from the cukes, peppers & garlic we grew. The blackberries are starting to ripen so we’re picking like crazy. Blueberries are almost finished. And we have a few strawberries and raspberries each day. We have one more apple pick, we'll make sauce with them. The melons are getting larger and looking gorgeous. We have watermelon, cantaloupe (Minnesota Midgets) & honeydews! The green beans have been amazing. Berit cooks them in a cast iron pan with lots of garlic and they're delicious! We spend a lot of time in our garden.

We met with our medical oncologist, Dr. Y, yesterday at UW Medicine. He’s nice, very informative and spent an hour going over options (there aren’t many choices), what to expect and to answer any questions we had. We really like Dr. Y. He’ll be directing the process for the foreseeable future. He’ll work with Dr. M, our radiologist at Fred Hutch. I should emphasize that all the people we’ve met during this process are smart, compassionate, and very generous with their time and knowledge. We feel cared for.

Following the protocol for advanced prostate cancer, we’re looking at two years of hormone therapy, with 5 weeks of daily radiation in the mix. That starts about 5 weeks from now. 

For the hormone treatment, one shot of Lupron every 3 months with a daily pill of Abiraterone (Zytiga). Because we didn’t want to delay the start of the healing process waiting for the insurance company to approve the treatment (the injection costs $5K), I’m taking Bicalutamide (Casodex) at this time to block production of testosterone, post-approval we will switch to Abiraterone (Zytiga).

And because abiraterone lowers the level of other hormones in the body, they add prednisone to the treatment to avoid additional side effects.

We’re using the nutritionist on staff, she’s wonderful, hoping to get access to acupuncture and maybe some counseling as this is pretty stressful stuff to digest. Fred Hutch and UW Medicine have lots of support services and we’re taking advantage of them 😊

I need to get a bone scan soon; to determine a baseline for bone strength as the hormone treatment can affect bone density. And we’ll continue to do regular bloodwork, throughout the process, to help monitor changes.

Side effects, there are a few, with possible fatigue, weight gain and hot flashes at the top of the list. Long term effects, will depend on how much radiation is used and how long the hormone treatment lasts.

And to add insult to injury, I have a fungal infection on my backside that is quite uncomfortable, but unlikely to have anything to do with the cancer. Regardless, I’m using an anti-fungal cream to treat and am watching my sugar/carb intake. It seems to be working.

The menus are getting easier to create as we dig deeper into a plant-based diet. We have a bunch of recipes now which are tasty and nutritious. We made some yummy enchilada’s last night.

I have a daily weight routine. I no longer run so we walk a lot with the dogs (cycling is out until the fungus is eradicated). We do yoga every evening. I’m 180 lbs, same weight as my junior year in high school. I have no stress to speak of (except cancer) and I feel great!

We’re hearing from lots of friends and family who are keeping us in their hearts and minds. Thank you, it means a lot.

Fingers crossed 😊

The First Week of August '24

“The first week of August hangs at the very top of the summer, the top of the live-long year, like the highest seat of a Ferris wheel when it pauses in its turning. The weeks that come before are only a climb from balmy spring, and those that follow a drop to the chill of autumn, but the first week of August is motionless, and hot. It is curiously silent, too, with blank white dawns and glaring noons, and sunsets smeared with too much color. Often at night there is lightning, but it quivers all alone. There is no thunder, no relieving rain. These are strange and breathless days, the dog days, when people are led to do things they are sure to be sorry for after.” -  Tuck Everlasting by Natalie Babbitt 

Granted we’re just about to finish the second week in August, but I love this quote and figured we were still close enough to use it.

 

We are still hanging with the dogs. We’re down to two at this time, Vinnie & Freddy. We refer to them as “The Boys”. The third, Mac, had some challenges and he’s moved in with some folks who are better positioned to help him.

 

We’ve had a great spring and summer, lots of projects completed. The garden keeps us busy. It’s very green right now with everything moving quickly toward harvest. We’ve been picking berries for several weeks now, started with the strawberries, then the raspberries came in, now we’re picking blueberries as well. We get 3-4 lbs each time we pick and yet we don’t seem to make a dent in the patch. We’re eating a lot, giving some away and the rest are going in the freezer for smoothies and pies. Potatoes and cukes are starting to show up. We’ll start making bread & butter pickles soon. And we already processed some apples into apple sauce, one of my faves.

 

We’ve been fortunate to have some visitors lately. My sister and one of her college friends came in May for a week. We did lots of touristy things, Port Townsend, Pike Place Market, Winslow Way, to name a few spots explored. We made great diners every night and crashed early to be ready for the next day’s adventure.

Our sister-in-law travelled from New Zealand to visit in July. She was in the area for a high school reunion. We were so happy to have her here for a few weeks. The weather was sunny and warm for her visit. We picked berries, took The Boys on lots of walks, did some touristy things and made so many great dinners that we started a list (menu?) to keep track.

My older brother will here in 10 days. He’s travelled from New Zealand as well and is in Maine, hanging with our other siblings and their families. We’re the only two in our family who don’t live in the Northeast.

 

After 42 years of gainful employment, in two very different, but very satisfying careers, I retired on the morning of July 1^st. That afternoon I went to UW Medicine to get a PET/CT scan to determine the length and breadth of my prostate cancer, great people and facility. Prior to the screen, they inject you with a liquid that marks the cancer. It has to be inside you for a bit before they start the scan, so we walked up to the Suzzalo Library Reading Room, amazing spot! The scan was 20 minutes. We hopped the light rail back downtown and stopped at Wild Ginger on the way back to the ferry.

We got a link to the scan results Wednesday evening, the night before July 4^th. We have no medical experience but could tell that it probably wasn’t good. Our suspicions were confirmed on Friday when we visited our urologist. The cancer had escaped my prostate and gone walkabout. It was in my nodes and possibly a couple other places. The procedure scheduled to take place that morning (a tour of my urethra via ‘microscope’) was canceled. It was hard to get any information from our urologist beyond that we needed to go to Seattle to take care of this and that we should make appointments with a radiologist and a urologic oncologist. We left with no referrals for facilities or doctors. It was disappointing, to say the least.

Upon arrival at home, we started googling and dialing. By 2 PM we had appointments with a radiologist at Fred Hutch and a urologic oncologist at UW Medicine. I’d just like to say that the folks at Fred Hutch and UW Medicine are knowledgeable, compassionate and very nice humans. I feel that we are in good hands.

We have since completed the appointments and have the beginnings of a strategy. After meeting with the urologic oncologist at UW Medicine we know that surgery is not an option. We meet with a medical oncologist at the end of the month to schedule hormone therapy to stop my production of testosterone (it feeds the cancer) which will be followed by 5 weeks of radiation.

The timing of this is fortunate in that I am retired, and it takes some time to navigate the Byzantine labyrinth we call healthcare. The unfortunate part, my condition was revealed at the start of summer and many of the medical staff, doctors especially, are taking their well-deserved summer vacations.

I should add that I have the best partner in the world; smart & resourceful, focused & disciplined, caring & compassionate, and, as luck would have it, an absolutely awesome human! She is motivated and tireless in her support, I definitely hit ‘The Lotto’ when we met!

 

It may sound bleak to many of you, but we do not feel that way. Yes, it’s been difficult, can’t remember dealing with this much stress, ever. I wake in tears most mornings, but it’s more of a pressure release than sadness for my condition or remorse for not acting sooner to address the cancer. We have faith and welcome the work ahead. We are active with healthy lifestyles and with a few tweaks, we’ll dial it in to create the best support system possible. We’re doing lots of yoga, have moved to a vegetarian diet (mostly), maybe vegan soon, lots of walks with The Boys and whatever else we need. Also, we’ve discovered some great resources for; reducing stress, staying active, making meals and lots more ideas for building our support system.

Please keep us in your thoughts and send some positive energy our way, we can use it. We’re planning on many years to come, but right now, we just need a little bit of luck.

 

More to follow…