I was just Reading how people are worried how long you can live with the cancer and what else you can do anything all that’s really good to know information about what you can do. But how long you live no one knows I’m here at our home with giant fires all around us with people losing their homes lose a life or two. So I think when you’re sitting there worried about how long someone’s going to live you need to take a step back and say thank God they’re here today
I hope no one gets offended or feels like I’m lecturing them
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Collarpurple
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I'm also sitting here with fires around me, it was over 100 degrees today and looked like it was snowing. I can hardly breathe oustide. I don't mind being reminded to appreciate my life in this moment. You can lecture me about that any time
You surround by fires too I just didn’t want to upset anyone but they need to not worry about how long will he have , I did that at first and because of it I was missing everyday we have❤️
When I stepped out of my front door, between the intense heat and the smoke my first thought was "I'm too close to the campfire!"
I agree with your message, I also encourage people not to think about how much longer they have, just learn to appreciate every moment and live in the present tense. I'm going to hold my first grandchild today, that's what I'm thinking about now.
Speaking of the fires, things have gotten considerably worse since my last response. I had to leave my house today because the smoke is so bad, but right now no danger of fire. Lots of evacuations as close as 5 miles away. So we are at my daughter's house about 40 miles east. Not clear air but better than "hazardous" at my house. I think our AQI is around 250-300 right now.
Yea , I too am sitting in the over powering smoke from those same fires. Temp today only 109F , was 112F a couple days ago ... gonna be well over 100F for every day in the foreseeable future. Power company turning off power to houses on a rotating basis, saying they don’t have enough electricity for everyone. You have to get into your car and drive around for several hours to endure the 109F temps. I’m 21 months past the time my medical team wanted me to enter hospice and thanks to adt I’m in biochemical remission. You are right ... no one really can say , on an individual basis, how long any of us PCa guys will actually live .... yes , all of us stage 4 guys are going to croak but right here and right now we should be thankful for what we have. It’s not going to last, so we have to learn .... like you say ... to appreciate our good fortune of being here today.
Advanced prostrate cancer is a collective group of great people , all of us with a common bond ....one way or the other. You are one of the nicest people on the group ... I , for one, appreciate you very much.
Well there’s a kinda major difference between knowing and not knowing with this PCa. My wife will most likely still be going for another 20 - 25 years , me ... I’ll consider myself “ extremely “ lucky if I get another 12 - 24 months ( I’ve already jaw dropped my medical team ) and its going to be a living agonizing hell if what’s happening right now is any indication. I’ve already experienced knocking on the door, 21 months ago, my medical team wanted me to enter hospice for a very good reason. If you haven’t been in that kind of shape yet, I can tell you it’s quite an experience. I’m also battling a 2nd cancer ....skin cancer , right now I have a 5” open surgical wound on my forehead that you can stick two fingers deep into. It’s black inside in places and looks like moldy cheese in others. I have to change the dressing 10 times a day and remove and restuff it with gauze once a day. It’s so nasty it makes my wife gag helping me ... now , in the last few days , a second site has opened up on my nose where it has spread. There’s a chance the skin cancer will get me before the PCa. I’m hoping the PCa gets me first and the stuff on my head doesn’t spread into my brain. Adt has incapacitated me so severely that I can’t walk more than 40 - 50 feet without turning red and huffing and puffing and my bp jumping to 215/110. Adt has caused my Bp, bg and cardiac rhythm to become very unstable. I have to eat pain pills like m&m’s sometimes, never mind the severe bone joint damage the metastasis caused all over my whole body before the PCa went into remission.
Other than those little distractions , I still feel lucky to wake up every day , I think I appreciate that as much as anyone else could. I still find good things about every day I’m still alive ... and I find “ workarounds “ to help make my days better .... for example I bought an electric e-trike ( like an e-bike but with three wheels ) and yesterday before it got hot I drove more than 14 miles on the local beautiful hike and bike trails ( sitting in a big comfortable chair sorta like an electric moped ) A couple days ago I took my drones out ( I’m a licensed drone pilot) and flew them fpv from a pic-nic table. ... an amazing experience , like you are sitting in them flying yourself, I flew for several hours. I have a full blown three screen flight sim pit in my house and spend hours flying a realistic Cessna 172 around local countryside and regional locations . I’m screwed for sure but I’m far from dead quite yet ... I’m trying to make the most of time spent with my wife and time doing things to take my mind off “ things “ ... at least with-in the limits of my dwindling physical resources .... and COVID isolation ( l live in a COVID hot spot )
Collarpurple nails it when she says you have to step back and be thankful you are here today ... sometimes the “ living hell “ part gets in your face but you just have to fight that off and keep on keeping on ! This stuff can get pretty crappy , so it’s up to all of us to try to be optimistic and be upbeat and find ways to improve a nasty situation.
Are you familiar with “Daruma” ? He was a Japanese monk that always gave to others. He first lost an arm then both then both legs. His figure is now a red ball . With a weight at bottom so if you tip daruma over he always rights himself up again . No legs no arms he still gave . This is the story of perseverance. Most Japanese restaurants have a daruma doll on the premise . I don’t know how “You “ deal with so much suffering. I cringe hearing what you’re going through , just like daruma , you are loved . Sending healing your way friend .😩
You are one of the best here on the APC group too buddy ... few if any deal with the mental and happiness angle as well as you do ... never mind the endless hours you contribute working to uplift an otherwise gloomy situation here. I can definitively say that I’m just one in a chorus that really appreciates your dedication. Thanks buddy.
I love you man! It’s a brutal world outside . Still on all of the fury like minded hearts and souls seem to meet . I’m worried about your infection. You’ve got to put that down . That’s too
Yea , I’m a little concerned too ... more because my surgeon had it cultured and it’s not an infection .. no bacteria activity there. I’m still taking massive antibiotics to make sure the gaping open hole doesn’t get infected tho. I probably have to realize it is what it is .. a big nest of skin cancer damage .... the cancer removed ..the damage remains. I’m hoping to get it stitched up , “ again “ ( 2nd time ) , this Friday and move on past this. It’s been over a year now and I still have that gaping hole to show for it ( third surgery) It’s been hard to maintain my sense of humor lately... kinda scraping the bottom of the barrel on this one ...and got a new one on my nose yayahahahaya yayahahahaya. For kripes sake yayahahahaya. I don’t care ... it’s chit in my face ( literally and figuratively) but I’m still gonna drive my e-trike and soak in the jacuzzi and do things while I’m still able ... screw all this crap .. if nothing else I have a strong will and a truck load of determination... I’m far ...very far from being defeated yet .
Thats high praise coming from someone that has several years more dealing with all this stuff than I have and faced plenty of grief and medical hammering all along. I’m good , and I’ve got you and the brothers here to send me the good wishes and good vibrations... it’s nice to have all us brothers here that support each other.. you especially buddy. ❤️ ya buddy
Fk me got my umteenth lupron inj yesterday....been laid up for day and half cuz all my bones ache..but you know what kal im gonna get my ass outa bed and do summin even if its wrong....pity parties over thanks bro...nothing like knowing someone else has it worse and does better....peac and love to all the apc troopers...fk cancer b.w
Thank you brother ..... I think .... yayahahahaya hell yes , get out of that bed ...up off that couch and do something interesting and / or fun. Hey , “ these “ are your good times , right here... right now ... there’s probably not going to be better ones later on. Better get cracking , don’t waste your best opportunities.
I appreciate your good thoughts Boywonder56 , thank you brother.
I disliked the Lupron shots so much that I chopped the juevos . 3 yrs no balls no shots either. It was worth it. I still take 4 little pink pills a day that cut that adrenally produced T.
Im in titan trial wich is erleada...an aplutimide...wich also kills remaing t...hence the morphing into homer simpson as one of our fellow sufferers once said....
You ARE Daruma man! Cannot be tipped over. I bow to you in admiration for your fortitude in the face of such misfortune. May you heal and be happy, filled with peace.
Thank you brother , I appreciate your nice thoughts . Therze some really great guys here ... brothers / soldiers in the same wars ... It good to be in the trenches with such warriors.
Don’t be in a rush to be us! He’s suffers big time.Im walking in easy street . So to speak . Until the reaper is back on my doorstep again . I’ll enjoy what I can . You enjoy everyday not in pain . Pain trumps joy . Let stay out of the pain zone by all means. We are all on a shortened leash nice. Peace and keep the tree up!🌵
Thanks Scott, and I am by no means in a hurry to get there. Quite the opposite but I understand what you mean. But both of yours humor and support (as well many others on this forum) is what keeps me checking it daily. The technical stuff is important as well but not quite the daily bread of humor,support and understanding,
I overloaded with the technical stuff from the onset. TMI .. For us, the pc patients it’s all drudgery .. I saw a family friend go out angry at the world with chemo for a terrible lung cancer. I mean “Forest turned mean against his angelic wife. He should not have smoked his whole life . Dieing in anger and fear , everyone loses. We laugh we cry after awhile it’s all the same. Lucky to still be feeling the human emotions and still alive . Let’s make those around us know that we love them . No matter what happens to us fine fellows ? Our loved ones must go on unscathed by our demise . In the end , death will be mercy to us all that are suffering . Until that day let us live life . If we pass the first round then pc turns into a game of attrition. Who can outlast who?? I’m praying for the mercy of a massive heart attach before the pc swoops back around for its dinner . I dislike the frickin APC . It’s our mutual nemesis. F it bro ! 😂😷
Words of wisdom Scott, as always. This disease has already taught me some valuable life lessons and truly loving my family was a biggy. I have to say I took them for granted until this came along. Not anymore, I find such joy in their faces and smiles and I have much more patience. So this hasn't been all bad, I have had quite a new look at life after my diagnosis and I would not change it back for anything.
Something caught my eye and sent me back here. So sorry you have this skin thing going on as well I thought you had it somewhat taken care of last I read you mentioning it. If attitude can cure you have nothing to worry about. Your a fu__kin Rockstar in that department! Sending good energy and prayers your way. I wish there was more I could do.
Thank you brother ... I kinda thought it was done as well. I’d get the stitches out last Wednesday and move on , finally leaving this after one year and three surgeries on this same agonizing persistent skin cancer. Then after I took the bandage off to air out the 5 inches of stitches, it looked pink and good but suddenly turned violently angry red and started leaking horrible brown goo down the side of my face. It was shocking. Looked just like a horrible infection. Had it lab cultured and it isn’t a bacterial growth ... wouldn’t say what it was. Surgeon opened it up ... covered my eyes ... and cleaned it out for over an hour. Told me to pack it with gauze daily and change the outer gauze up to 11 times a day ... every time it got wet with goo. First day to change the gauze , my wife helping me .. we pulled the gauze plug and the huge hole was filled with black stuff and stuff that looks like the mold on cheese left in the fridge too long. My wife gagging the whole time yayahahahaya. She’s a trooper. I don’t know what that is but probably it almost certainly something to do with cancer. Yuck.
I’m back in Friday , hopefully to get stitched up again and , once again, be done with this one ( got a new one on my nose ) . Its calmed down considerably and looks like nice and clean red meat now yayahahahaya I surely hope this sapsucker is finally done messing with me .
Anyway that probably was TMI ... but kinda interesting to know how a little skin cancer spot on your forehead can go sideways and get crazy. Who knew stuff like this could happen on your forehead.
Thank you brother ... got my receptors fine tuned for all those good vibes you are sending , I really appreciate your great thoughts and support. I’ve had my a$$ kicked by professionals ... PCa and adt, I’m not letting this little bad boy take me out before the PCa .... jumping in line not allowed here yayahahahaya.
Kaliber...you are one tough dude with tons of fortitude. And you are helping me to revise my outlook, lowering the gloom and raising the glory. Thank you for opening your heart. Amazing Fellow -- that's you!
I hate to admit this but I called your Dermatologist the other day and asked him "what the hell is going on with the hole in your forehead?" He told me that he thinks there's a daruma doll hidden in there....So chill out and don't fret.....
Yayahahahaya. That’s funny because I asked the same thing from my plastic surgeon...Hack-em-up Hannah. She told me there was a big echo in there. Go figure ...
Going back in tomorrow afternoon... maybe she’ll stitch it back up ... mostly just bright red meat in that hole now and it went from two 4X4 Sized gauze plugs to one 2X2 gauze plug now. Hopefully it hasn’t spread to any lymph nodes, I don’t think it could because there is already someone else living in those yayahahahaya
Thank you buddy, it’s good to hear from you ... keep those smiles coming 💪💪💪👍👍👍😂😂😂😄😄😄🌸🙂🌼🌻🌈🦋❤️
It’s tuff to hear what you’re going through but awe inspiring to see your positive attitude. Your wife and family must be extremely proud of your tremendous courage and rightfully so. Wish you all the best going forward. 👏👏👏💪💪💪🌈✌️
As I have said before I look at my cancer as a gift. I was going through life on autopilot, half asleep waiting for some day. Cancer was my wake up call. Since my diagnosis I appreciate each day. I went through psychotherapy in a journey of self discovery and came out the other side feeling more alive than ever.
Excellent Magnus. Same for me. Cancer is my teacher. One of them anyway. It woke me up to return to job 1 in my life: to learn to give and receive and embody love in the highest ( deepest) way possible. I Retired from working for money. Only volunteer work now in my profession. Learned deep and authentic meditation which I now also teach. And life is rich and beautiful despite such great challenges and suffering for so many. And here In HU with my brothers, whose fight with APC is noble and I am awed with the beauty of their journey. As I am with you.
Mediation and some restorative yoga 🧘♀️Start now and two weeks In you will be surprised how different you feel. Let us know what happens for you - great post to look forward too.
Mateobeach ... eloquence! You are a poet . I would attend your class gladly.. I am humbled by the strong spirits in our men and women here . You included . I follow your words . In a pandemic dealing with APC we still find common ground and even humor in life’s ironies.
I wandered through life just looking at what I could get out of it until.i was diagnosed. Since then I look for purpose, am grateful for eveything I encounter, love way deeper and have really forgotten myself and focus on what good I can do. If this were to end in a year, a month, a day or an hour i don't worry about it. I am in a good place.
For those of you surrounded by fires, I am thinking of you. Please be safe.
Perfect Maleko I honor your compassion, one of the highest forms of love. You are filled with it and overflowing. Blessings to you as you indeed bless others. Namo Namaha.
I freaked with my Dx in 2015 - PSA at 840.2, Mets to L side ureter lymph nodes, mostly GL7(4+3) and some GL8 in all 18 samples. Looked up the survival stats then and it said 28% for five years.
Now that I made that, I feel that everything else is more "gravy"
With ADT(Lupron/Abiraterone) induced depression, I actually look forward to seeing, and engaging my dental patients - I put on my Dr. Kam persona and that really helps elevate my mood.
I tell patients that every day I wake up is a wonderful one, and I ask esp my longstanding patients (21 years in Tehachapi) who know my story for hugs and no one has declined.
Hiking outdoors esp elevates my mood, did a slow 10k(6.2 miles) on Sunday and just basked in the outdoors/sun
Did the last 110km (69.65 miles) of the Camino de Santiago last year with son/his wife and disconnected from the #stageivpca and just enjoyed the Spain countryside and bonded with my kiddos
Also, have said to patients, that I'm so happy to still be opened during this crazy COVID-19 days and also that I'm surviving here in the US and may have died if I had Stage IV PCa in another country
Yayahahahaya yayahahahaya great post doc ..... but ..... somewhere in the background I hear that high pitched 400k whine creeping up on me with someone off in the distance saying “ little pinch “ and I get a glimpse of that 1 1/4 “ needle yayahahahaya ya OMG !!!!!
Well said, if you have a chronic disease you see the small things in life and appreciate them. My heart goes out to the wildfire victims who lost everything, even if not perfect health at least I have my house and my garden.
Not offended at all. "How long do I have" is the wrong question. We can waste a lot of time obsessing over that instead of figuring ways to fill every one of those moments.
In my post I said that I went through psychotherapy. If you have the time read Lawrence Leshan's YOU CAN FIGHT FOR YOUR LIFE. He had some interesting results providing psychotherapy to cancer patients .
I felt so offended and felt like someone was lecturing me. Then I woke up and realized that I was dreaming of my ex-wife and that I was setting her house on fire...
So I think when I'm sitting there worried about how long my ex-wife is going to live I need to take a step back and say oh God I hope it's today.
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