Had to get my MRI yesterday. The trip to and back from San Francisco is six hours and another hour in the tube. My one respite during the day was a late breakfast at Cracked and Battered. I have eaten there before and once again had the fried chicken eggs Benedict. Delicious. And what other restaurant can you eat at whose name sums up your mental and physical state for the last month
Not the Best Anniversary..........
About two years ago at this time I was advised that my Ocular Melanoma had metastasized to my liver. This past week I had my MRI, CT Scan, labwork and infusion. The infusion is no big deal but for not being a fan of the IV poke. It mostly gives me a quiet hour to read my book or bore the nurses with my musings.
Anyway, the labwork and CT Scan were fine but not so much the MRI. It showed some growth of the lesion(s) and shadowing around it. Perhaps somewhat ironically, I was slated to only receive two more infusions of immunotherapy - October and November. And then a free man but for a few MRI’s and CT’s next year. Oh well. I actually thought it odd that I stopped all treatment. It is not like the cancer is gone. I guess I got my rather perverse wish of ongoing care.
I am slated to get another MRI in early October and in all likelihood will begin radiation treatment. We will see how it goes. When this journey began I am HLA negative and was not eligible for Kimmitrak. I became part of a clinical trial. I was not picked for the experimental drug. I have received two infusions of Yervoy and Opdivo and 20 infusions of Opdivo. The drugs had managed the disease very well up until this September. I cannot remember the name of the experimental drug but it has shown promise and may be FDA approved before years end - and my oncologist indicated I may be eligible.
I am curious to see what the coming months hold. But in the meantime - live your life. Take the trip, Buy the outfit, Eat at the fancy restaurant, Visit the grandkids. Whatever your budget is - kick it up just a bit. Life is short.
A few photos of me and Lila. She is a Daddy’s girl but has been paricularly close this past week. Dogs are smarter than us. Just Saying……
Be Kind, Be Humble, Stay Strong and God Bless!
The Death Clock
We attended a Tom Ferry Real Coaching conference last week in Southern California. About 5,000 real estate agents from 49 of the 50 states and at least half a dozen countries. He has built a crazy successful business. He is extremely passionate about what he does, and his annual Success Summit is obviously about real estate but much more as well. I like Tom if for no other reason that Jackson Hole, the Grand Tetons, is one of his happy places. Mine too. It is my cover photo on my computer. Maybe he will invite Mela and me to his place one day.
Mela and I at the Tom Ferry Success Summit in Anaheim
The Death Clock. Sounds ominous. Anyway, I guess you can enter “ death clock” in Google, and a site will come up, and you enter your age and some other data, and it estimates the time you have left. Tom is in his mid-50s, and the clock said he had about 9,600 days left. Call it 30 years. The mid- to late-80s is not a bad life.
But that was not his point. Acknowledging he had more days behind him than in front, about 9,000 days left - he wants to love more, give more, do more, be more. Essentially, squeeze the juice out of each and every day.
It is not about being busy but living with purpose and intention at a high level. It got me thinking. And yesterday was my appointment with my oncologist, Dr. Kim, and my immunotherapy infusion. My treatment is winding down. I only have 3 more of 24 treatments remaining.
I asked him about next year and next steps. Essentially, how many MRIs and CT scans will I be getting? I got 8 in 2025 and 4 this year. I was assuming about 3 to 4 next year. Sadly, he alluded to the fact that many of my brothers and sisters - so to speak - are not doing well or have passed, and he wanted to check on the process and protocol for me. I am a unicorn. So grateful.
I lost my eye to uveal melanoma in 2018, and it metastasized to my liver in September 2024. It has been two years. Dr. Kim did say back in 2024 that it is not a “good cancer” but does have patients doing well after 5 - 7 years. I do not know God’s plan but have utilized about 35% of my time statistically doing well. About 8,000 less than Tom. Not entirely true. I am about 10 years older.
The important part. What does living with purpose and intention look like? Can’t say that I entirely know. But more golf, more grandkids, more photography, more travel, more laughter, more joy over the next 1,200 days. Who knows. Maybe 9,600. But God.
Pausing for a moment of gratitude at the Labyrinth Garden outside the Buchanan Infusion Center
Upon leaving the Buchanan Infusion Center in San Francisco, I paused for a moment at the Labyrinth Garden for a moment of gratitude as I typically do. The garden is quite simple but very calming. I then made my way to the Woodhouse Fish Co. for a lobster roll. I was hungry and thinking of French fries. I looked at the menu and saw clam chowder. Decision made. It tasted particularly good. Time to make my way home. A decent day all in all. Live with intention. Find your joy.
Delicious Clam Chowder
Delectable Warm Lobster Roll on Buttery Brioche Roll
Be Kind, Be Humble, Stay Strong, and God Bless!
Deer Hunter........
Great movie. Remember the scene of Russian Roulette? That is how I feel with each MRI. I know - a little melodramatic. But a small glimpse to where my mind goes everytime I am put into that teeny tiny tube for an hour and told to hold my breath for 5 minutes at a time while the machine makes insanely loud noises that rattle my brain. Ok a little hyperbole.
Anyway the purpose of the MRI is to take images of my lungs and liver to see if the trigger has been pulled so to speak. But if you recall the scene from Deer Hunter - they turned the pistol on the bad guys. I like to think the loud noises eminating from the macine are warships attacking the Evil M - aka Uveal Melanoma. But I also like to think everytime my blood is drawn that only the blood with the cancer is coming out. No luck so far at least that I am aware of but the thought process helps.
At least from my perspective I am glad to report that my MRI, CT Scan and bloodwork this past June 22 showed no signs of growth or spreading of the disease. So grateful. Perhaps I am playing with a very large capacity magazine. My Dad used to say - I am just waiting for the other shoe to drop - which is perhaps a nicer way to think of it. Still not sure where that saying comes from.
I do always try to find my moment(s) of joy with each trip to SF for my treatment whether it is food, family, a good interaction with hospital staff or simply an hour of quiet to read my book while getting my infusion. I am blessed with being able to stay with our kids when I need an overnight in SF. No offense to them but more importantly I get to see our grandson who brings joy in spades. I have also been blessed with great care from my medical team including my “cancer concierge”, Alya.
Me and Alya. Could not do it without her.
And of course food. I always try to have a good meal when in the City. Nothing fancy mind you. After completing my MRI - I noticed Tommy’s Joynt across the street. Opened in 1947 it is known for having the largest selection of imported beers anywhere. It is an old school hof brau. I opted for the hand carved pastrami sandwich on rye. Delicious. The macaroni salad was respectable. But the ambiance and the people were the treat. Mostly working class and a few long time SF people based on appearance. A few of the chairs had torn vinyl and my plate was chipped but would not change a thing.
Me and Luca. Reading time.
Tommy’s Joynt
Pastrami and Swiss on Rye. And a glimpse of their ambiance.
Always find your joy no matter how small or fleeting. It can make your day.
Stay Strong, Be Kind, Be Humble and God Bless!
Number 18 in the Books..........
Thursday, May 21 I made my way out to my car at 0 dark thirty for my monthly trip to San Francisco to visit Dr. Kim and receive my infusion of immunotherapy. Not that I ever look forward to it but was not feeling it this morning. I started the car. I often listen to Classic Vinyl on Sirius XM. There lit up on my dash like a neon billboard was an artist and the song. The artist, Pink Floyd. The song, simply titled - Breathe. Who says God doesn’t have a sense of humor.
I typically allocate just over three hours for the drive. It usually takes most of that time. If I am a little early I get a cup of coffee from Peet’s and a Johnny’s Donut and read my book. This day took just shy of four long miserable hours. Unfortunately, there was a tragic accident on the Bay Bridge that included a fatality of a motorcyclist. As a friend reminded me that evening while I may not have had a great day - it was significantly better than the poor individual that lost their life. Which I suppose is in part the premise of this missive. I am doing pretty good.
I have just concluded 18 of 24 rounds of my immunotherapy. I will be done in November. The first two rounds of a two drug cocktail (Opdivo and Yervoy) had horrific side effects. The last 16 rounds of Opdivo have left me a little fatigued but no other negative side effects.
Infusion Day
The prior visit with Dr Kim he had mentioned that I am doing very well with taking the drug which allows it to do its job. I was grateful but the way he said it also meant that some patients were not doing as well and perhaps could not even conclude the treatment which did not bode well for a long term prognosis. I clearly had been living in my own selfish cancer bubble.
To the extent I had thought about it I naively assumed all the patients were experiencing a similar version of what I have been. So wrong. I felt bad. I think even a little survivor guilt. I was not doing any better at someone’s elses expense - but still. Which brings me to my next point.
I am into this adventure about 18 months. Maybe I have another 4 to 6 years based on the 5 to 7 year rockstars that I have previously mentioned. Maybe more - maybe less. Who knows. But God. As of today I am doing well, the drugs are working and I apparently have a reasonable prognosis.
It is not fair or right to those that have fallen or not doing well for me to be complacent. I still have this gift called life. It needs to have purpose and intention. Actually we should all live that way. Mind you I have no plans to climb Everest or sail the Atlantic solo. Some days purpose and intention may be nothing more than reading a good book while sitting under the pergola in the backyard with a cup of coffee. Here’s to making our days count.
Stay strong, Be Kind, Be Humble and God Bless!
The Battle is Our Own.........
I started writing this blog over eight years ago. Not entirely sure why. Best I can come up with is - it is very therapeutic - and something was stirring inside me that I had to get out - and had no real interest in talking about. Still holds true. Kind of funny instead of a few conversations I chose to put it out there for the world to see. I now have the audacity to think I have something to share. And at least three of you seem to agree.
I do not think I hate much of anything or anyone - but I hate cancer and maybe lima beans. It is personal. My wife, Mela beat colorectal cancer and has been cancer free about 13 years, my sister’s husband has cancer, and my cousin is on her third round of breast cancer. First time around 30 years, then 35 and now in her early sixties. And me with my Uveal Melanoma.
We are all fighting the same war but the battle is our own. Every story is different. Probably too much time on my hands. (that could be a song) I started to reflect on this - this past Thursday. It was my infusion day in San Francisco but actually a very good day.
I had time to walk down to Johnny’s Donuts before my appointment. The vanilla glazed old fashioned hit the spot. During my time going to SF, my cancer concierge, Alya, (she is very smart and extraordinarily kind and has a much better title) has gotten engaged, gotten married and is now expecting. So excited for her. Dr. Kim said that I am handling the single drug very well and is good for a longer term prognosis. Anyone else think of the famous Jim Carrey line - So you are saying I have a chance. But sadly, others are clearly having a tough time with the single drug which brings me to today’s premise - I will get there.
And best of all the Woodhouse Fish Co on Fillmore spent the month of April celebrating their 17th anniversary with $17 lobster rolls. My mouth was watering. About half a block away I saw about 15 people milling about outside - waiting for a table. My heart sunk but remained hopeful. They have a bar/lunch counter. I walked in and there like a shining beacon on a hill was an empty corner seat. I got it. So thankful.
The Annoying Line at Woodhouse Fish Co
I ordered my warm lobster roll and Arnold Palmer. Absolutely delectable. I finished it and was wishing I had ordered a side of fries. Still hungry. One look at the dessert menu - easy decision. Strawberry Shortcake. Now time to drive home.
The Oh So Delectable Lobster Roll
Scrumptious Strawberry Shortcake
Same war different battle. Thursday, April 23 as I made my way back to my room for the immunotherapy infusion I passed a room that had an elderly gentleman seemingly sound asleep in almost a fetal position with his IV drip while his wife (I assume) sat in a chair with an almost stoic look. I wanted to cry. I don’t think there has been more than two bell ringers during my visits. Everyone cheers and claps with abandon all while knowing we may never be the bell ringer.
The battle. Every IV of chemotherapy, every searing round of radiation, every tube of blood drawn, the endless minutes in an MRI, the nausea, vomiting despite nothing to eat, the severe and chronic diarrhea, the sleepless nights, severe and sudden weight loss, the rashes, the blindness, the fevers, chills so bad you shake like you have exorcised, the never ending drives to and from doctor appointments, every drip of immunotherapy, the surgeries. It does not end. Yet we all get up and hold our head high as we continue to fight. I am grateful to be alongside this courageous group.
I have been blessed with supportive friends and family, great insurance and great medical care. I can not imagine going through this journey without any of that. But yet the battle is our own.
That could be a song is Supertramp. Can’t get it out of your heads now - can you. The Jim Carrey line is from Dumb and Dumber. I know what you are thinking - how perfect for you Nick.
Stay Strong, Be Kind, Be Humble and God Bless!
The five percenters..............
I do not think I have finished in the top 5% in my class in anything but I know that is no surprise to any of you. But hoping to now. I started to read an article on A Cure In Sight - A great organization for those with Uveal Melanoma. The article was covering some great news on a drug that was showing promise for extending the life of those with my type of cancer.
Let me back up. My oncologist, Dr Kim has mentioned a number of times to me that he still has patients that are around after five to seven years. I realize I have stated this probably too many times in my missives - and that Dr Kim talks of these patients like they are rock stars - my term not his.
Which brings us back to the article. Anytime you want to show progress you have to track and measure - and probably have some statistics to validate your research. I had never mentally made that leap of faith with Dr. Kim’s patients that are still around after that 5 to 7 year window. The article did - and I felt like I was hit with a 9 iron (anyone else flashing back to the Rockford files - great show). Less than 5% of those with my cancer survive five years. Rareified air. Life unfiltered. Here’s to being a 5%er. Actually, No. Here is to reversing the percentages!!!
Luca Sporting Bogie’s Panama Hat
Niko at Badwater Basin in Death Valley over my Birthday
Be Kind, Be Humble, Stay Strong & God Bless!
The Gang at Christmas
P.S. The photos are my reason for sticking around
Living with Cancer...........
Aside from Easter and Mela’s birthday this past weekend, I got to celebrate the illustrious eight year anniversary of my Ocular Melanoma. Not the official one but eight years ago at this time I left my opthamologist appointment after having seen not one but two opthamologists, an image of a blob attached to my left eye, all but blind in my left eye and a referral to an ocular onocologist. Even yours truly could figure it out. April 13 when I did see Dr Tsai it still stung a bit when he said, Nick you have cancer.
A little over six years later it metastasized to my liver. This particular cancer likes the liver and the lungs should it return. Not sure why. Maybe I am lucky it went to my liver. Maybe it has pickled and can’t grow or spread.
Over the last 18 months I have been receiving treatment for the new cancer. By all account I am doing well. Trust me, I am grateful. It was not unitl about May or June of last year that I started to feel my old self if that is even possible. I was blessed with going a few places and doing a few things but life is different. Living with Cancer.
I think two things in particular triggered this thought. I saw an article on Facebook by A Cure In Sight. (A great organization for those with my cancer) It was titled The Invisible Disease. To be honest I did not read it closely. Probably should have. The idea of the article crossed my mind but did not ponder it til more recently - at least my idea of it.
Outwardly people with my cancer (and perhaps many cancers) I look fine. I know with my rugged good looks, broad shoulders, cut physique and Geroge Hamilton tan that many people think this guy really has it altogether. I do like the fact that I am relatively normal (I know what you guys are thinking) but none of us know what angst, burden or weight those around us are carrying. I have a long time friend that tragically lost his son’s life to suicide. I can not begin to comprehend the weight that he and his wife shoulder. I would take my cancer every day of the week and twice on Sunday before losing a child. Be Kind.
The other key recent moment was my visit with my onocologist, Dr Kim, at the end of March. In 2025 I had about eight MRI’s and CT Scans, and infusions and blookwork every month - and a few emergency appointments due to the side effects of my first two doses of medicine.
Yours Truly at the Death Valley Dunes
In 2026 I will still get the bloodwork and infusions but the surveillance over enemy territory will be cut in half. I have been apprised the ground troops are leaving at the end of the year - based on the most recent science and protocol my treatment will end. I believe I will get one or two MRI’s next year. After that, do I have a peaceful democracy or does the evil regime grow and spread. Living with cancer.
As I mentioned we have been some places and done a few things and have some stuff coming up. But I need to be much better about finding those moments and being protective of my time on the day to day. You can’t live every day looking forward to something that may not transpire.
I have signed up for golf lessons. Not sure how much better at 66, half blind and terminal cancer I can get. But want some fun. Yes, I find golf fun.
I do not know God’s plan (I imagine all for the best) but based on data to date I have already lived about 35% of a very good life expectancy with this cancer. Living with Cancer.
This year my cancer schedule is reduced and all but gone next year. A little strange. Living like everyone else - but not. Living with Cancer. Find your joy. Be Kind.
Stay Strong, Be Humble, Be Kind and God Bless!
A Hodgepodge..............
Well here we are. It is just shy of my eight year anniversary of being diagnosed with ocular melanoma that cost me my left eye and about 18 months since it metastasized to my liver. Yet here I am. But God.
When I began the most recent phase of this journey I was to receive four doses of the two drug cocktail - kind of like vodka and vermouth but different - but I only made it through two. The hangovers -aka side effects - were insane. It was my understanding that I would then be getting the single drug cocktail in perpetuity. Fortunately but for a little fatigue no real side effects - they started to give me the good stuff.
Infusion Day
That has all changed. I will conclude my immunotherapy at years end. I guess the new protocol is two years of treatment pending no change. This is admittedly hard for me to wrap my head around. It is not like the cancer is gone. Anyway, I did like the analogy Dr Kim provided. He said to think of it like childhood vaccines such as polio, measles etc. You get one shot, maybe a booster and you are done and your immune system takes care of the rest.
I decided not to ask about Plan B should it grow or spread.. Hopefully, I am good for a few years and maybe Plan B will be a magic pill that cures cancer. Perhaps wishful thinking but that is what I need.
Current events……. My January, February and March blood work were all good and my MRI and CT Scan at the end of March were good as well. Life has been good so far this year. February was busy in a good way.
The gang at Death Valley
Luca’s 1st Birthday
Celebrated my birthday in Death Valley with my daughter Nicole and family. She flew up last year and surprised me for my birthday. Two years in a row I got to see her on my birthday. Maybe a new tradition. Mela and I went to Las Vegas and saw the Eagles at the Sphere. Crazy good. Everyone needs to see a show there. I bought a couple of overpriced clothing items. At my age and health if you get rid of four you get to buy one. We also celebrated our grandson’s, Luca, first birthday.
Dinner at Pisces in the Wynn in Las Vegas
We have a few things planned for the rest of they year. It helps me to have something to look forward to. As I have said before I am MOST grateful they found the cancer early, great medical care, great insurance to pay for this journey, friends and family and all the prayers that lift me up.
Stay, Strong, Be Humble, Be Kind and God Bless!
I Love the F-Word
The F-Word has the capacity to bring me a profound sense of joy and peace with this journey I am on. I don’t know that I can go a week, heck a day or even an hour without profound use of the F-Word.
Faith, Family, Friends, Friday, Food, February (birthday month). Fun, Flog (golf backwards - sometimes golf is like being flogged), Fratarcangeli (Mela’s last name), Fotography and of course my Francisco Giants. Okay, I took some literary license.
I would be lost without the F-Word. I try to use and exercise the F-Word at every opportunity. It helps me focus - hey another one. And helps with my mindset, gratefulness, joy, think, laugh and live my life with increased intention and perhaps a little urgency in the best way.
As you can see I should not be left alone too long with my own thoughts. I think it being Friday, February 13 helped trigger this. In case you were wondering F$&k Cancer can count too.
Stay Strong, Be Kind, Be Humble and God Bless!