flyingfrets Posted March 30, 2015 Share Posted March 30, 2015 Can't sleep so I figured I'd drop in on some friends and vent if you don't mind indulging me... This may take a little while, but I'm just trying to keep my head from exploding. Those of you who've been following my 335 build are already aware, but for those of you who aren't, I've been fighting hormone resistant metastatic prostate cancer since December 2012. Had a radical robotic prostatectomy in January 2013, 12 weeks of high intensity radio therapy (radiation in plain English) April - June of 2013. Lost my Mom in mid-April right before radiation started, but I saw it through and began hormone deprivation therapy as soon as radiation was completed. Had an implant placed in my left arm and began oral medication to block all testosterone my body was producing, the theory being that prostate cancer generally feed on testosterone, and by starving any remaining cancer cells, I'd beat the disease. Was told by the original oncologist & the urologist that my PSA levels were undetectable and they considered me cured, but we had to wait two years to be medically declared as cancer-free. In November 2013, my PSA level rose to .08. I was concerned because at .1, it's considered a chemical recurrence. I was told not to worry unduly, that these levels can fluctuate. Much as I wanted to believe them, I'm not stupid. A guy with no prostate shouldn't have any detectable level, and under no circumstances should it be rising. By Early January 2014, my PSA level had risen to 2.7. Not .27. Two point Seven. Not just chemical recurrence, but biological relapse. Bone scans revealed that it had metastasized into the second left rib, just below the collar bone. The radiation oncologist said it was localized and was easily rectified with another round of radiation. He ordered ultra-high intensity radiation daily for 5 days. They literally blasted the ribs & sternum. Burned all the hair off my chest and under my arms. Left me with something akin to a moderately bad sunburn, but my levels dropped immediately, and once again was told that the worst should be over. Ten days later, my beloved daughter Erin died at the age of 24. Needless to say, I was devastated and frankly, I still am. I can't imagine ever "recovering" from a loss like that. I thought I'd have to figure out a new "normal" for me, and that would be the best I could hope for. 8 weeks later, new bone scans showed metastases in the femur and the ball-joint in the right hip. With that recurrence, I learned what cancer pain felt like. 4 more weeks of radiation and they gave up on the hormone drugs & put me on an oral chemotherapy drug that could be taken at home with minimal side effects (unbelievably dry, itchy, ashy skin because it interferes with the adrenal glands - intentionally - so they would stop producing trace levels of testosterone). 4 weeks later (early July 2014), they did a CT scan that showed an area of concern, so they followed up with a PET scan and needle biopsy of the left lung. There were no conclusive results, but given that if it was a malignancy, it was early stage and in an attempt to stop it in its tracks, I had wedge resection of my left lung done in September 2014. Bone scans were repeated again in mid-November, and for once, I was able to breathe a sigh of relief. My PSA level was just slightly above undetectable levels, and the radiated areas were showing signs of bone regeneration and best of all...no new lesions. Had a wonderful Thanksgiving and Christmas with the family. In January, I went back to the radiation & medical oncologists because I was getting undeniable cancer pain in the right side of my rib cage. 5 weeks after the positive bone scan in November, They found metastases in the spine at T2, L4 and sure enough, the right ribs. Began a new 30 day course of radiation on the affected sites. A week in, I was hospitalized for 5 days due to the agonizing pain in the back of the rib cage. A diagnostic MRI revealed further metastases at T4, T5, T6, T8, L4, L5, L6 and several more ribs on the right. These were NOT evident on the bone scans run just 2 weeks earlier. The radiation oncologist was directed to discontinue ALL other radiation & focus on the T4 vertabrae because in addition to the rapid metastases, the tumor was already of a size that was pressing directly on my spinal cord. They radiated the Hell out of it (from 2 angles, 2 3/4 minutes each angle every treatment for 11 days) so I wouldn't lose use of my arms, be able to hold my head upright and to prevent possible seizures. My PSA was 13.7 (4 times the nominal level for a healthy man WITH a prostate) as of 3 weeks ago. likely considerably higher now without the medications I'd been on. At that point, I was told it was time to stop "putting out the brush fires" and "Nuke" it. They gradually withdrew all the meds I was on and started me on a regimen to mitigate the effects of the chemotherapy I'm beginning tomorrow afternoon. Which brings me to where I'm at now. I have never in my life felt as unwell...physically and spiritually, asI have in the past 2 weeks. I never thought somebody could or would actually look forward to chemotherapy, but I began to. I've had my own little personal melt-downs and folks kept telling me "you gotta keep a positive attitude and outlook." I know they meant well, but that was a whole lot easier 2 years ago. Again, I'm not stupid and knowing that the disease is seriously outpacing treatment is extremely frightening, and I can actually feel it spreading into my right shoulder. Of course, I'm hopeful that chemotherapy will be the answer. I've been told that at this point (Stage 4), I will never be cancer free, but chemo may drive it into remission which would make controlling it as a chronic condition much simpler. You can't begin to imagine how I'm praying. Yeah, I keep trying to stay busy. Still working, though it's become quite a challenge some days. The fatigue is truly something to behold, but the reality is, I need my insurance and it's helpful to my state of mind being able to get outside myself, as did the guitar build. I did have to step down from the Executive Board of the Union local (I was Executive Vice President of the Clerical Bargaining Unit, representing the vast majority of our 6,000 members). Couldn't keep up with the travel and the demands it placed on my time above & beyond my normal work hours. Not happy with the decision, but I have to recognized my limitations. Many of you who've walked down this road have shared your stories of beating the disease, encouragement and words of hope on the forum or through PMs, and I can't thank you all enough. There truly aren't words to describe how much they've meant to me, and how many times I've re-read them to draw strength from your courage and prayers. I appreciate you indulging my rambling rant this evening. I don't like admitting weakness, but at this point, I don't care anymore...I'm terrified out of my wits. The fear of the unknown is probably the toughest for me to deal with because there are no answers for the time being. If that makes me a wimp, so be it. I'm worn out after the last 2 1/2 years and right now, I can't even fake it. Just want to extend a heartfelt thanks to everyone who's supported me in my fight thus far. It means more than any of you could ever know, but this community is the greatest group of "buds" I've ever met online. And guys, to Hell with embarrassment. If you're 50 or older (40 if you have a family history of it) PLEASE GET YOURSELVES CHECKED. I had no symptoms what-so-ever. It turned up in a routine blood test in August of 2012. I apologize if I've brought anybody down. Wasn't my intention at all. Just needed to get all this outta my head, and thanks so much for listening. G'night... Link to comment Share on other sites More sharing options...
moparguy Posted March 30, 2015 Share Posted March 30, 2015 Wow, Im speechless. What a battle. Good luck to friend and Im truly sorry for the loss of your mother and daughter. I wish you well! Link to comment Share on other sites More sharing options...
stein Posted March 30, 2015 Share Posted March 30, 2015 What a roller coaster. I say a prayer for you. Link to comment Share on other sites More sharing options...
Autumn Light&Shade Posted March 30, 2015 Share Posted March 30, 2015 Hi flyingfrets, I've said a prayer for you and sent positive vibes your way. I wish you all the best. Kind regards, Emma Link to comment Share on other sites More sharing options...
btoth76 Posted March 30, 2015 Share Posted March 30, 2015 Hello Flyingfrets! It's very hard to understand for what reason people have to go through such hard things in life. It's beyond a man to understand the logic of fate...I really hope and wish, that it all is not without sense, and it leads to a better form of being. You are very strong. I wish You all the best. Bence Link to comment Share on other sites More sharing options...
Mr. C.O. Jones Posted March 30, 2015 Share Posted March 30, 2015 No need to apologize! I feel a great respect for you! Someone in your situation, and if it was not enough with cancer, loosing beloved family member's that keep's fighting can't be a wimp. Not in my book. I can't say it enough times, it is inspiring to see how you managed it not to throw the towel, and always kept fighting. I really hope it gets better, and wish you the best. Greetings Marcos Link to comment Share on other sites More sharing options...
Searcy Posted March 30, 2015 Share Posted March 30, 2015 As un fun as it is I get checked every year. I'm sorry you're having to go through this and I'm sorry about your daughter. This sounds life far more than one person should have to deal with. Stay strong. Link to comment Share on other sites More sharing options...
badbluesplayer Posted March 30, 2015 Share Posted March 30, 2015 Oh man, I'm so sorry to hear what you're going through. You have us here to lean on. Link to comment Share on other sites More sharing options...
Cougar Posted March 30, 2015 Share Posted March 30, 2015 At that point, I was told it was time to stop "putting out the brush fires" and "Nuke" it. That sounds promising. Best wishes, ffrets! Link to comment Share on other sites More sharing options...
jdgm Posted March 30, 2015 Share Posted March 30, 2015 I am very sorry to hear this. A terrible sequence of events. I do not wish to pry or upset you any more, but what happened to your daughter? It is a hard and unnatural thing to have to bury a child. My brother died in a motorcycle accident back in '78 and my mother never really got over it. I am sure it is truly impossible sometimes to stay 'positive' with what you are facing - Lord knows it is hard enough anyway in daily life these days. If you would like to write or offload more without posting please feel free to PM me if you like. My very best wishes to you... Link to comment Share on other sites More sharing options...
rct Posted March 30, 2015 Share Posted March 30, 2015 My thoughts are with you brutha. rct Link to comment Share on other sites More sharing options...
kidblast Posted March 30, 2015 Share Posted March 30, 2015 not ashamed to say,, this post brought tears to my eyes. wow! you are a very courageous person. I'm praying for good things to come your way Flyingfrets, if anyone needs some good news, it's you. /Ray Link to comment Share on other sites More sharing options...
Marshall Paul Posted March 30, 2015 Share Posted March 30, 2015 We're here with you mate. We'll walk alongside with you ok, keep you company. Link to comment Share on other sites More sharing options...
flyingfrets Posted March 30, 2015 Author Share Posted March 30, 2015 Guys, thank you all...so much. I have to admit, it's kind of odd hearing about "my strength and courage" because those are two things I feel are in pretty short supply right now...but thank you for the thoughts. I am very sorry to hear this. A terrible sequence of events. I do not wish to pry or upset you any more, but what happened to your daughter? It is a hard and unnatural thing to have to bury a child. My brother died in a motorcycle accident back in '78 and my mother never really got over it. I am sure it is truly impossible sometimes to stay 'positive' with what you are facing - Lord knows it is hard enough anyway in daily life these days. If you would like to write or offload more without posting please feel free to PM me if you like. My very best wishes to you... No, it doesn't upset me anymore than I am to discuss it. Rather that cross a line that the mods might find unacceptable, let's just say that Erin had her own demons and suffered from something that many also consider a disease. If as a parent any of you have a child fighting an addiction, don't make the mistake of thinking "it's just a phase. They'll out grow it." Some of them don't, and my daughter was sadly one of the ones who didn't make it. I knew loving her wasn't a cure, but at least she died knowing how much her Daddy loved her. As best you can, put the anger that surely comes with it aside from time to time and love them with every fiber of your being. You just never know... I have her ashes with me because I promised her the night she died that she would come home with me where nothing and nobody could ever hurt her again. And now I believe she's watching over "Daddy" and I still talk to her. Believe it or not, it helps. In loving memory: Erin Elizabeth Setember 26, 1989 - February 17, 2014 Link to comment Share on other sites More sharing options...
L8_4thesh0w Posted March 30, 2015 Share Posted March 30, 2015 Your perceived "weakness" is not such at all. Some losses you never get over, but hope you can somehow get past. Addiction is indeed a disease and abuse of any substance can rewire the brain. My father was an alcoholic and so much of his mind was eaten away by the time he died, he wasn't the same person we all knew. Sometimes I smell coffee very strong and no one in my household drinks it. One of my prized possessions is a very heavy porcelain mug which he kept full all the time. My best friend died on my oldest's 22nd birthday. He always kept a full cup too. So did my Grandma. I wonder if it's one or two of them, or all three together. They're watching from just beyond the veil. You neither ranted nor rambled but in fact, through your strength reminded me of my weakness. All else pales when confronted with the fight of your life. I wish I could give you strength and help you get junk yard dog mean with that damned cancer. Don't make peace with it. Prayers, regards and respect, Ed Link to comment Share on other sites More sharing options...
kidblast Posted March 30, 2015 Share Posted March 30, 2015 Rather that cross a line that the mods might find unacceptable, let's just say that Erin had her own demons and suffered from something that many also consider a disease. oh man, that's awful. One of my best friends, and band mate for over 20 years, his 26 year old daughter with two beautiful small girls, same thing. She had shaken it for a few years, and started to hang around with "the same old crowd" again. Eventually one thing led to another, and, that one time,... was all it took. I don't think they (Bill his wife, and other daughter) will ever be the same, not to mention the 4 year old (the other was just 6 mos old.. she will never know who her mom was) such a tragic turn of events. and this stuff is almost epidemic over here in the States. My brother in-law (who is also my best friend) lost his son in 2011, (20 years old) hit by a bus while coming back from studying at the library at UCONN. (In a brightly lit crosswalk, the driver, another student, was distracted. Just litterally ran him down. Dave was heading to med school and was on his second 4.0 year when this happened (4 years ago last Sunday). He was a truly beautiful person inside and out. heartbreaking for all of us to this day. My bro and the rest of us, have never really gotten past this. sometimes things in life make no sense what so ever. (I now cringe when ever I hear someone use that cliche' "you threw them under the bus huh?". I hate that saying now.) /Ray edit: btw, I remember this now, you had mentioned this back when this happened, I recall when I saw Erin's picture.. I'm so sorry.. Link to comment Share on other sites More sharing options...
Karloff Posted March 30, 2015 Share Posted March 30, 2015 Oh man, I'm so sorry to hear what you're going through. You have us here to lean on. when I initially read your post, I wasn't sure just what to say, but I think BBD said it for me. I'm sorry for all of it . Link to comment Share on other sites More sharing options...
MississippiBlue Posted March 30, 2015 Share Posted March 30, 2015 You are in my prayers man. Take care and be well. Kindest Regards, MississippiBlue Link to comment Share on other sites More sharing options...
milod Posted March 30, 2015 Share Posted March 30, 2015 All I can say is that my thoughts and prayers are with you. m Link to comment Share on other sites More sharing options...
Searcy Posted March 30, 2015 Share Posted March 30, 2015 And now I believe she's watching over "Daddy" and I still talk to her. Believe it or not, it helps. In loving memory: Erin Elizabeth Setember 26, 1989 - February 17, 2014 Link to comment Share on other sites More sharing options...
SteveFord Posted March 30, 2015 Share Posted March 30, 2015 Holy Sh*t, here's hoping for the best for you and that the chemo does what it's supposed to. Link to comment Share on other sites More sharing options...
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