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…