We all started at different times but the ending seems the same - just a few years or dozens. We all know that day we were told you have cancer.
Well October is the five year anniversary of his diagnosis… Halloween day to be exact
But actually the journey started in 1997. That’s when he had is first colonoscopy and the polyps were removed. So every three years he had another colonoscopy and again polyps. Then the allergies- food, animals, insects and plants. Meanwhile his father died of blood cancer. A few years later his older brother was diagnosed with ALS. Shortly thereafter neurological problems started for him- falling down flights of stairs head first backwards was the worst. Extreme pain and other problems. Since his brother was slowly dying from the ALS, we had him tested for ALS. Then on top of that his mom was diagnosed with cancer in her leg that returned after 30 years in remission. Well not ALS but his spine was slowly disintegrating collapsed disc had pinched the spine column. So his mental health deteriorated due to the pain. Pain management put him on OxyContin and back braces.
Meanwhile his job was trying to get him fired. He had been in the hospital several times because of these problems. During this period his brother passed away and shortly thereafter his mother developed liver cancer. About 6 months later she too passed away. Long story short we were able to get him a medical retirement after 6 months of hassles and 10 inches thick of paperwork from doctors saying he was not able to continue with his job. So no job no house… the bank took it. Fortunately we were able to buy another home in another state before the banks took the house- a great real estate lawyer told us how to do it.
So he got lucky with a good back surgery and we got him off the OxyContin. Still had the polyps problem (truly were expecting colon cancer) and neurological issues and permanent pain in his joints. Regular therapy with a psychologist and psychiatrist. Then his kidneys started to act up. Had a hernia surgery in between all that too.
Then in 2018 his internal medicine doctor ordered a routine PSA. Same time his VA doctor also ordered a routine PSA. Yeah both were outside the normal range. So he was referred to the urologist. More PSAs and the dreaded bend over and cough. Digital found nothing but the PSA was still elevated. So biopsy were done. Five spots were sampled. Results were back on Halloween day. Three were fully cancerous and two were reactive. Gleason number - Primary 4 Secondary 4 Total 8. Histological grade group 4. Robot assisted surgery was performed in January 2019. We waited for the pathology results for about a week and then found out it was outside the prostate. So we were sent to the radiologist… first time it was the prostate area. Trying to catch the little sucker that got out. They got away and moved on to another lymph node. Meanwhile our urologist left the hospital and we were left with a radiologist running the show. After five different radiation treatments he referred hubby to the oncologist. And of course you all know the SOC to be done and then onto Pluvicto. He’s getting the fourth dose on 18 October.
Ever since the second dose of pluvicto he’s has nauseous stomach, dry mouth and extreme edema. He barely eats ( I feel like Mrs Claus going “eat poppa eat”) he’s not even getting over 1,000 calories. I’m nagging him to drink at least 3 high calorie boost every day. They gave him two types of anti nausea medications and raised his wate pills from 20 mg to 80mg. Also gave him potassium tablets. I guess this is his Kobayashi Maru and there’s no reprogramming the outcome.
A side note… last year after asking politely from his doctors to write Nexus letters showing the chemicals he was exposed to in the Air Force may have caused his cancer. We were at bases that are on the EPA contamination list. Two were national priority listed- same chemicals as Camp Lejuene. The VA gave him a temporary 100% disability to be reevaluate each year. The good part from that is he can get home medical care for routine needs. Plus they provide the depends and other devices like the grab bars and ramps.
Making each day count is the goal after treatments.
Sometimes I think we should have invested in shoe stocks 😜. Just remember this if things get you down: WMC and BMC. WMC - within my control. BMC- beyond my control. Basically I can control how I react to things around me like attitude, doing daily activities, preparing for bad weather and so forth to make the place I am at better. But I can not control everything thing. So I don’t let it get to me. Besides it does not help him if I’m freaking out about everything.
Oh my, you have been through so much. My heart aches for you both but i especially feel for you às i am also a wife. How blessed is he to have such a wonderful partner. My husband completed his 4th Pluvicto last Friday and we are approaching the 5 year mark as well. Keep the faith and know that you are not alone.
Wowzer!!! You two make a great team!! You’re both fighting day after ever lovin’ day. My husband and I are in the same ring- throwing different punches, but trying for a KO of this formidable PCA opponent.
He goes for Pluvicto #3 next week. So far the side effects have been bearable for him.
You are a warrior, and I appreciate you sharing your battle tale. It helps so much to know I’m not in this support role alone.
Sending warm wishes for some comfort and peace as you both trudge this road.
There are only four kinds of people in the world––those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.
- Rosalynn Carter Former First Lady of the United States
This is useful information for anyone… no matter where you are in your journey or the world. We need to remember we’re now considered special people. Just navigate through the site They have downloadable pdfs
I am so sorry for everything you both have gone thru over the past few years. It is truly amazing how much we can tolerate. My best wishes and I hope things can go smoothly for a while. I agree, we are always waiting for the other shoe to drop. Take care of yourself.
both you guys have had it rough. Putting you on my transfer of merit board and sending out a big warm ehug to both of you. Sorry you’ve had to endure all that.
yep you bet. About 300,000 tons this year just in Fresno county alone. I make my own fresh raisins several times every fall. Great sprinkled on corn flakes or a super sweet snack. I have lemons, mandarin oranges, apricots, and white peaches as well. White peaches, when picked fresh properly, make astonishingly flavorful pies too. Pretty much every house in the county ( 1.2 million ) with a yard has citrus, stone fruit and / or veggies. ( and now legal towering marijuana plants ).
The Central Valley supplies 40% of all produce eaten in the USA. Still , screw cap wine grapes are our #1 crop with the most acreage.
You must have been here before yayahahahaya. It’s the middle of October and it’s still hitting 90f here. Nut harvest , pistachios and almonds in full swing too.
Yes, I lived in the Central Valley for almost 6 years… Atwater and Merced. Later on I lived outside Sacramento for about 3 years. I still have pottery from a shop near Folsom. I used to go to the Modesto mall at that time it was the biggest near me. I really loved going out to Bodega Bay. And watched friends surf in Half Moon Bay. I also used to sponsor Scripps. I loved visiting San Francisco, Yosemite, and San Diego.
You certainly have an intimate knowledge of the valley , with all that. I like it further up north myself … like the Sacramento area. It’s a little cooler and a lot greener there, it s located centrally between the S.F metro and Tahoe. But … the closer you get to “ the metro “ housing prices skyrocket. A house exactly like ours is “ at least “ $200,000+ more expensive there in Sacramento than here. We considered trying to move north about 25-30 years ago, but …..even back then , it was too expensive for us at the time. When you are younger , most everyone wants to live in the pea soup thick excitement of one of the big California metros . Now that we are much older, the peace and quiet of a sleepy agricultural town like Fresno starts to grow on you. We can drive up there and stay anytime we want , if we want that experience. Lol
Speaking of pottery, my wife loves and collects both pottery and ( mostly ) art glass too. Orient and Flume in Chico one of her favorites.
Almost forgot I had nice tea and scones at a really fun place called Tuckbox Inn while visiting Carmel. They also had loganberry jam. Which you can’t find in most places outside of Colorado. This was before Amazon😆
there is a rare , small crop , blackberry family berry that grows from mid coastal areas like Carmel and Cambria , north up into mid oregon supposedly…. It’s called olallieberrys …that are super tangy and delicious. Now and then I have Linn’s ( restaurant and bakery ) bakery & restaurant in Cambria send me a olallieberry pie in the mail ( they always arrive just fine ) and , for sure, I load up on their olallieberries when I’m over there. They are both rare and very delicious. Those Linn’s olallieberry pies are large and deep dish…. and wonderful. Olallieberries look like large blackberries.
Oh my… went to the Linn online store - two family size pies$110.00 And the Dark Chocolate Olallieberry Cream Truffles, Olallieberry Hot Cocoa & Love Mug Gift Set was $42 but is currently out of stock- only available near valentines holiday All of it looks mouthwatering 🥹
WOW …. Yayahahahaya yayahahahaya. That’s probably because the berries are out of season right now and they are using their precious stock of flash frozen berries. They are delicious but surely not worth over $50 for a pie. we probably bought our pies while the berries were still fresh off the vine.
They sell everything , very affordable, in their restaurant and the gift shop area near where you pay your dinner check. We go there, when staying in Moonstone Beach, Cambria ……. for home cooked, meat and taters , style meals after eating all that rich food in exotic places like mbb&g. ( moonstone beach bar and grill ). Its everyday stick to your ribs mashed potatoes with gravy, chicken fried steak and broccolini . Top it off with a big wedge of deep dish olallieberry pie with a scoup of vanilla ice cream. Of course we buy a pie “ to go “ yayahahahaya. Keep it in mind and next year , try again when the berries are in season, it’s worth your effort IMHO.
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My son’s PSA rose a bit today. 
Dad diagnosed with advanced PC, Gleason 4+5. Feeling helpless
Jevtana
Pluvicto and PSA 
