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Days ago
Puzzle lovers know piece
This world is clearly divided. Sure, there’s the political divide, the sports divide (go Ohtani) but the joy in an old school 1000 piece puzzle is a colorful and precise battleground that starkly divides the type A’s from type B’s. In this case the Active vs the Bystander. In our small family we now have 3 generations of active puzzlers, the most ardent are the girls (although the guys have been known to join in for the easy parts).
I used to wonder why puzzles are the benevolent crack of the gaming world but having studied my household over the years I have a thesis. For one person it is an active meditation, for 2 or more it’s community but in all cases it encourages a big picture understanding with a small picture process.
I just finished my 11th chemo session. Although I was hoping to finish at 10 and look towards surgery my discussion with my oncologist was insightful. My doctor is experience personified. A kind demeanor, senior in age (although he’s probably younger than me) and a bit slow moving. But as he explained the big picture of aiming for a complete cure and reducing the chance of recurrence I was all in. So we will go with the protocol that produces the best patient outcomes which means that I will go through the full 12 chemo sessions.
To give you a better understanding of my progress over the last 7 months there is a measurement in my bloodwork that is called a “tumor marker” and anything over 37 is abnormal. After my diagnosis and before chemo my score was 1571 but now showing the response to the chemo I am currently back down to a normal 27. I recognize that this incremental small picture process was necessary to get to this point. Although there are many other factors to face before surgery, I am taking this as a win.
As for puzzles, in our family we (and when I say we I mean they) have graduated to a puzzle that purposely does not include a photo of the finished design. The puzzle uses story clues to help you complete the puzzle so the process of understanding the big picture is a journey not an answer. I couldn’t help but appreciate how this mirrors what we all go through. Wishing you all encouragement for your own journey. ❤️
See below for a photo of an active puzzler in the wild. Me? Still a bystander.
Life is a marathon… and a sprint
My first real foray into anything competitive was in junior high when I followed my older brother into long distance track and field. If you know my brother he has long legs and a personality that was built for long distance. By the time I got there he had already moved onto high school ten miles away but the track coach was happy to read my name and welcome me on the team. That was the last day anyone was happy with me running long distance.
Running for what seemed like endless miles in the cold Long Island evenings was meant to teach me that life is a marathon so pace yourself. But for the next half of the track season in every race I came in last place, emphasis on last. But for most of us that’s our origin story, we don't begin knowing who we are and we certainly can’t tell the future so we start by just following the pack.
I just finished my tenth chemo session and it’s been an endurance run for sure. Although I didn’t anticipate having to run through eleven or twelve sessions it looks like that will be the case. It feels like I am always running from behind but there is hopeful good news. With the latest blood work and CT scan it is clear that the chemo is shrinking the tumor and that the overall strategy has been effective. The data in the blood work has a line item classified as a tumor marker. When I was first diagnosed my score was 1500 and as of last week it is 51 with “normal” being 37. So in two weeks I should be under the magic number but still I would not be surprised if they have me take all 12 chemo sessions as that's shown to have the best patient outcomes.
Regardless this is all so hopeful and we are looking at the next step which is surgery. I am not too proud to stop in the middle of this long distance run and appreciate you my friends, family and the medical team that have dragged this whiny newbie to this point.
To finish my first sports experience, I had a heart to heart with my coach and we both agreed that I was not built for long distance running. The other lesson learned was by experiencing last place and the new outlook it gave me on competitiveness (maybe too much)? For the second half of the season I ended up competing in pole vault which later led me to gymnastics in high school and college. But that as they say, is a story for another night.
Wishing you endurance for the marathon and the joy of the sprint ❤️
Look back with joy, look forward with hope
Two months ago my high school had its reunion and this month there will be an Abe family reunion (the first in 11 years). With the timing of my diagnosis I couldn’t consider going to either but it did bring me clarity to what it means to look forward. In the past, if you asked me about high school I would have said that they were happy memories but that I don’t keep in touch with anyone. Today that’s changed.
My diagnosis has provided me an opportunity to experience a deep connection with old friends, one that maybe we were incapable of having when we were young. The same is true with family. No matter how close or distant the relationship nothing brings you clarity like mortality. Some days just the thought of a friends and family reunion tour is enough to fuel my hope and optimism.
It has been a tough month. My oncologist recognized that the compounded side effects were taking a toll on my body and (finally!) pulled one drug from the cocktail given to me this last infusion. Despite that I can’t recall a time when I was more incapacitated. After 8 treatments the constant side effects now include neuropathy and double vision which contribute to my dizziness and fatigue.
The good news is that the cancer is still trending downward and that I am going to have a CT scan this Wednesday. If the scan and bloodwork are good they will schedule me for surgery. I am preparing myself for the likelihood of another infusion session but regardless my impression is that the doctors think I am capable of a healing through surgery.
I kept this in mind yesterday as I finally shaved my head of whatever hair remained. The image in the mirror felt like a necessary milestone, a documentation of the journey. On one hand, it’s science betraying my last shred of vanity, on the other it’s science contributing all it can so I can fight an insidious and unseen opponent. I don’t take this opportunity for granted.
Wishing you joy and hope ❤️
Comparison is the thief of joy.
I love this quote because it applies to all of us. When you’re young it sounds like, “why can’t I be like them or why can’t I have that?” And as we get older it’s “why can’t things be like they were” or “why don’t I feel like I did 10 years ago?” That being said, comparison in the right context helps us to make progress and evolve. There is a time for challenging the status quo and there is a time for simply appreciating the moment we’re in.
10 days ago I finished my 6th chemo treatment but have not been able to bounce back as in previous weeks. The compounding effects of all the drugs have left me with chronic neuropathy. In addition, the daunting thought of gearing up for the next treatment this Wednesday (already!) contributes to my addled state of mind. So, I find myself in a unique state, appreciating the fact that I’m still alive with a good chance of beating the odds but frustrated as I compare my “new normal” against how I used to feel. The hopeful context is that after the 9th treatment we will evaluate operability. So fingers crossed that I will be strong enough in six weeks to be a viable surgery candidate.
So this week, as I juxtapose my own health against the current chaos in our country it reminds me that comparison for the sake of improvement and healing can be a positive. But only when seen within the context of the disease. I hope our country heals and becomes a better place and that the current pain illuminates the disease that divides our nation.
Lastly, it has been such a privilege to hear from so many of you during this chapter. Your lives are so busy and I am amazed that you can take the time to be there to support me. In the darkest days that support is truly a difference maker. It always bears repeating that I am so grateful for all of you - the family I am born to and the family I choose.
With joy ❤️
Just finished the consultation with the oncologist and he said the chemo is working! He’s decided to postpone the surgery to remove the tumor and use the chemo to reduce the tumor as much as possible, so at least another four more chemo sessions until the next scan, but he doesn’t see any evidence that the cancer has spread. God is good!
Happy Mothers Day!
This year gives me a new appreciation for the “Moms” in our lives. The ones that look out for us, that sacrifice their time, the ones that lead us in directions that we may not naturally go. And this is true for the non-traditional Moms too, those that care not for their own children but for the many beloved that have been entrusted in their care in some fashion.
This journey has revealed the love and care that is ingrained in so many of you and through these few months I have been lucky enough to experience and benefit from your nature in my time of need. I am grateful and as my health improves it is in great part because of the support and care I feel from each of you. Thank you.
I just finished my 4th chemo session and the compounding effect is tough. I do, however, better understand the rhythm of what needs to be endured and I am looking forward to a new CT scan in 2 weeks. It will be good to get a better sense of progress and expectation moving forward. It is also helpful to know through genetic testing that cancer was not part of my genetic makeup. This is helpful for my daughters to know as they grow older.
When discussing future timelines, my oncologist reminded us of an Eleanor Roosevelt quote: ”Yesterday is history, tomorrow is a mystery, today is a gift. That's why we call it the present.” I hope you are all able to spend a relaxing day today... life is good.
The good, the bad, and the ugly.
It has been a week since the 2nd chemo treatment. Without labs or a CT scan it is unclear how effective these efforts are in fighting the cancer but personally it feels like the pain caused by the tumor is drastically lower. My hope is that there is a direct correlation and prolonged chemo will not be necessary. In any case, the "good" is any pain relief is welcome and much needed.
But the "bad" is that the side effects from this treatment have been much more intense than the initial one. Between the neuropathy and the weight/hair loss I feel (and look) like I have aged 20 years in 2 months. If you can imagine, that kind of sea change is a blindside hit to the vanity that is hard not to take personally.
And yet, (remarkably) thats not even the “ugly” in the above classic movie title reference. The Ugly is the black darkness that comes alongside you without notice or provocation. It’s been 20 years since I fought depression but that perceived reality is so personal that it’s difficult to explain much less cast aside as irrelevant. I do know, however, that I can choose not to give agency to the Ugly. Which is one piece of wisdom that seems to come with age.
So for you influencers, I am looking at style alternatives for this life chapter. Maybe a Japan-based bohemian look? Or a Peaky Blinders retro? If I can’t pull it off (which is very likely) it may then qualify as “ugly,” but at least it’s only on the surface. ❤️
We went to the park with Mom and Dad today. We played on the playground, watched some dogs and considered playing some pickleball in the future. Since Dad’s immune system is compromised right now, we’ve been more cautious bringing Baily by the house. With allergies being in season, we can never be 100% sure what the runny nose means. Luckily, the sun is coming back out more. So going to parks and being outdoors feels like a safe place for Baily to see that her Oji is fighting hard.
Dad is now in recovery mode for this round. The symptoms are more intense than the last time. I can see how the pendulum of good days and bad days will take its toll. I hope that we can continue to spur Dad on; to continue to help him enjoy the sun on his face when it’s hard and to plan for new adventures when this is all over.
Sakura and K-dramas
For those of you who watch K-dramas (even if you don’t admit it) you’re familiar with the Japanese Sakura. Specifically, those poetic, pink cherry blossoms that fall gently and frame the lead actors in a swirl of cinematic romance.
Beautiful… But after some wonderful email exchanges with some of you this season, I think the real beauty of the Sakura is the fleeting joy that the trees inspire in their short season. The Sakura flavored pastries in Tokyo, growing backyard Sakura trees in California and the realization that beauty doesn’t and maybe shouldn’t last forever.
Today I had my second chemo session. Before the IV started I felt great and was responding well to last weeks treatment. Recognizing a rare sunny Seattle morning, a quick walk outside around the hospital in the fresh air made me feel normal. It was a Sakura moment.
Spoiler alert. Unfortunately the chemo side effects have now kicked in and I feel like crap. 💩 A reminder that sometimes life sucks - so one step at a time.
It might sound boring, but I think the boring stuff is the stuff I remember the most. (Russell from Pixar's UP!)
It has been one week since my initial chemo treatment and I am feeling better today than I have for weeks. But that isn’t what occupies my mind today. Last Sunday I sent an email to my design mentor and friend Glenn Togawa to inform him of my cancer diagnosis. He called me immediately and we easily chatted about postponing a film interview I had planned for him and he shared some classic Glenn advice on my treatment.
When I was a young architect fresh out of USC, Glenn was my first boss. But at our respective ages of 24 and 34 we were more like peers and we shared a lot of life including design, writing music, surf fishing and even the occasional party. In many ways, he contributed to the person I would eventually become. Today I learned that Glenn died from a heart attack three days after our phone call.
I am amazed and sometimes saddened at the apparent serendipity that comes along with our everyday life as we plan, train and execute for the big moments, the headlines, the accomplishments in our life. Glenn and I have both had some of those moments. But as important as those may be, it’s the boring stuff in between that truly make our lives meaningful and make us miss our friends when they're gone. ❤️
Dad completed his first treatment cycle today. We made a quick trip to the hospital to have a nurse remove the IV from his port. Dad now heads into about twelve days of recovery before his next round. He'll start the Granix injections tomorrow and continue them for the next five days.
Dad is tired and nauseated, which is to be expected, especially as the steroids and other symptom-placating drugs included in the IV cocktail wear off. He's feeling increased touch sensitivity to cold and hot and has an awful case of the hiccups. He has lots of prescriptions filled to address these and many other potential symptoms. I'm sure it will just take some time to find a combination and rhythm that curbs his discomfort.
Hooray! First chemo session complete (sort of).
I did more drugs today than all the years of my youth combined. And more steroids today than all my years in athletics. Why is my session only sort of complete? I still have 46 hours of continuous IV and 5 days of injections to go. The lesson? Kids, don't do drugs.
But all in all chemo went pretty well today. Most of the side effects are not expected for a day or two so I wanted to recognize that this is just the starting line. Also to recognize that there are so many in our community that are hurting in ways that don't enable an outpouring of support. But you are seen and may each of us know peace and hope.
❤️
My daughter, Baily, and I have been trying to get in as much time with Dad as we can since chemo treatment is just around the corner. I’m not sure how often Baily will be able to play with her Oji once treatment starts. It will probably depend on how his body takes to the chemo. Since his immune system will be under a lot of stress, for now, I am assuming that bringing around a germ-toting preschooler all the time won’t always be the best choice.
Baily loves playing with both mom and dad. She especially loves dad’s puppetry and drawings. This week she wanted to put together a present for him. The present held some of her well loved comfort items that help her feel better: soft towels, a beloved stuffed animal, some Bluey books and some stickers. Her understanding of the situation right now is that Oji doesn’t feel very good. I am thankful that she’s developed a loving relationship with dad already. One where she not only feels cared for by him, but wants to care for him in her own special, innocent way.
Dad had his "what symptoms to expect" call with the pharmacist today to better understand the many ways his body might react to the medication. The primary chemo infusion of Fluorouracil (appropriately, 5-FU) targets all replicating cells, so many of the symptoms he's likely to experience are related to the collateral damage of losing good replicating cells. One of the most important things Dad will have to do is give himself a daily jab of Granix for five days following each infusion to counteract the loss of white blood cells.
There's a long list of drugs being prescribed or recommended for managing many of the other symptoms like bone pain and extreme nausea. The pharmacist asked if Dad was prone to motion sickness, and Mom and I shared a knowing look. Some of my earliest Disneyland memories are of the snack break after Teacups to give Dad time to recover. (Lyanne and I have since inherited Dad's inner ear and now no one rides the Teacups.)
We're otherwise preparing for the long treatment journey ahead. Dad ordered an adjustable daybed to use on the main floor of the house, and when it was delivered, eight individuals were circled around it very eager to help him put it together including his three-year-old granddaughter and eight-month-old grandpuppy. It can be hard to not smother Dad with help – I think we're all just craving ways to contribute to Dad's comfort and care in a time where so much of it is beyond our capabilities. But it's a good reminder that Dad must be feeling that all the more, and sometimes he just needs one of us to hand him a screwdriver while he builds his bed himself.
One of the most impactful ways Dad has felt cared for these past few weeks is from the ways many of our family and community have reached out in support, so thank you to everyone near and far who has written Dad an email, cooked him a pot of soup, or kept him in their prayers. These acts of love have dug a well of hope we will certainly be drinking from in the days ahead.
So you’re telling me there’s a chance 😀
I am excited to share that my chemo treatments have been scheduled to start next week. The setback I experienced with an infection from my gall bladder has cleared and my labs have progressed enough to safely begin the treatment strategy. Step 1 will be chemo every other week for about 2 months. Should this be successful it opens the door to operability. From what the doctors have told me it sounds challenging (insert understatement here) but I am so grateful that I have this hopeful pathway.
If that's the update then this is my takeaway. I am amazed at the diversity of pain that each of us experience. And whether that pain is physical, mental or emotional it is incredibly personal and often unseen. The best and most “human” thing we can do for each other is to retain our empathy and our hope. So take that a.i. - beep boop. ❤️
Friends as medicine.
At my company we often talk to our patients about "food as medicine", that the right approach to food is effective in healing. This morning I did not feel good and I had to resort to a pain killer, all because I forgot the power of that simple statement. Long story short, Korean fried chicken nuggets and I are no longer friends. But in my defense I only ate 3 and this culinary risk was also meant as an experiment to explore my dietary limits. Lesson learned, due to cancer my approach to food is forever changed.
But the greater lesson this week was not "food as medicine" but rather "friends as medicine." As good food feeds the body, friends nourish the soul. I am SO thankful for the messages, prayers and all the different ways that you have shown your love for me and my family. I am overwhelmed by your generosity of words, concern and time. I expect a treatment timeline soon but in the meantime my update is one of attitude; I see grace and kindness in each of you. Thank you. ❤️
I feel good today.
I have finally slept and as Lyanne mentioned I am able to eat again. By the way, this is not the way to reach your goal weight.
The best advice from some of my good friends that have been through a similar journey with cancer is to take one day at a time. Brother, that is an understatement. I realize I am still at the start of this process but going from hope to disappointment and back again is emotionally and physically tiring. I am so grateful for being able to have my family around me and can tangibly feel the value of all the prayers lifted up and care from family and friends from the different communities of which I am a part.
Another example of love is this journal. So thankful to Aly and Ryan who designed and built this site in record time to help me stay connected with everyone. I hope you find it edifying and feel free to reach out to me anytime at rickabe@gmail.com. Hope you are all well and hope we can speak soon. ❤️
Dad was discharged today! It hadn't looked like dad would be leaving the hospital until Monday at the earliest. Thanks to the doctor's quick work, they were able to identify the bacteria causing his infections. This allowed them to target the bacteria by prescribing him specific antibiotics. In addition, Dad's lab numbers seemed to be trending in the right direction, which showed the doctors that the new stents were working and gave them the confidence to release him. Though he might miss that hospital Jello, Dad is happy to be resting (and eating) comfortably at home. Congee, oatmeal and protein shakes are just a few things he's ready to start enjoying! Now he's wondering if his new enzyme pills will act as supercharged lactaid pills. Will he be enjoying ice cream for the first time since high school?
Dad was in surgery most of today. The endoscopy confirmed the stent they put in Dad’s pancreas just a week and a half ago is already pinching because of its proximity to the tumor. The original stent was plastic, and they’ve replaced it with a stronger metal one that should fair better until we can get the tumor shrinking with chemo.
Additionally, and crucially, the return of the blockage caused some fluid to back up in Dad’s gall bladder, resulting in an infection – hence the fever and chills. They added a second stent between the gall bladder and the small intestine, basically a shortcut for Dad’s digestive system to act as an extra measure of keeping things moving and importantly preventing future infections. We’re told this hospital more or less pioneered this particular surgery, and that’s of great comfort to all of us.
They’ll keep Dad for at least a couple of days to see how (mostly liquid) food is making its way through his new and improved stent system. He’s also still on lots of IVs for different antibiotics as they work to fight the infection itself. We’re eager to get Dad home – it’s hard to sleep when an IV alarm is going off every few hours and the cranberry juice cartons are hard to open.
Dad went to the emergency room today with stomach pain, a fever, and chills. The doctor is concerned about an infection following his surgery. Dad says the pain in his stomach feels like it did when it first started, so everyone assumes another blockage or some kind of compromise of the stent they put in last week. They are prepping Dad for another endoscopy tomorrow to confirm what’s happening and do additional surgery depending on what they learn. He’s on fluids and some antibiotics in the meantime, which are helping him feel better. One of the meds they’re giving Dad is Metronidazole, which is the same antibiotic the vet was prepared to prescribe for Dug's (our cavapoo) stomach issues if they didn’t clear up on their own, so we are now calling it the Dug Medicine.
Dad’s laparoscopy surgery went well. They made three incisions on his stomach and used cameras and a saline wash to look around his abdomen for visible cancer cells, which helps construct the picture of just how much the cancer has spread. The doctors weren’t able to see any during the surgery, which is a hopeful sign. While he was under, they also installed the port on his chest that they will use to administer chemo when the time comes. Dad is sore from the various incisions and groggy from the drugs, but otherwise looking good. He says his abdomen feels like he did a really hard core workout on Tonal, but without the benefits of developing a six-pack.
Mom and Dad met with the oncologist today to begin putting together a plan to address the cancer, starting with getting a better idea of how localized it is to the pancreas. Dad is scheduled for laparoscopy surgery this Friday so the doctors can take a look. They are expecting to start chemo the week of March 10, which should give Dad about a week of rest following the surgery. The stent that was added to his pancreas during his endoscopy last Friday to resist some of the blockage created by the tumor has helped Dad eat more. We’re hoping he can add back some mass before his chemo begins. Dad says he’s back at his high school weight! Ryan, Dug, and I booked a one-way flight up tomorrow, so we can all be together as we figure out what life will look like for the next month or few.
Sushi saved my life.
A few weeks ago I was eating sushi in LA and I ordered too much. Can't waste good sushi so I overate and felt gluttonous and uncomfortable. I soon began experiencing pain in my upper stomach to the point where I couldn't eat anything. After visiting my Primary Care Physician in Seattle we started in on a battery of tests. Ultimately an ultrasound, CT scan and endoscopy confirmed that I have pancreatic cancer. In retrospect the sushi was in part a coincidence but if it had not sounded an alarm I would likely have not considered the thought of having cancer and it would have gone unseen.
We are still early in the tests and treatment but it looks like we are in for a fight. They warned me not to google pancreatic cancer and they were right - damn internet.