It's been 3 months since I last checked in so it's time. I've had two onc appointments over the last three weeks; one was canceled due to my error and one was canceled by the physician. We are working to get that rescheduled and I'll tell you why I want to speak with him but let me first just go over the basics.
As per usual, the We're Not Talking About An Ingrown Toenail disclaimer applies. If you prefer not to read about male genitourinary function and or bowel habits, please feel free to click the lil button and close the page. Now :)
As far as my overall health, I think I'm doing pretty darn well. No new pains to report. I've had a fair amount of energy over the last 2 to 3 weeks, although the last two or three days have been kinda rough. But I am happy to report that I think the reason it was rough is that three out of five days prior to that, I made it to the gym for the first time in I'm sure two years. Didn't do anything crazy or try and lift heavy weights. No, I just did exercises that would kind of wake up my 2020 atrophied body. And I think it kind of wore me out. But I'm starting to make it a routine so this is great. I could stand to lose 10 pounds and really 15 or 20 would be great. But most importantly I need to get some strength and flexibility back.
OK so for the below the belt stuff. Urination is quite good as long as Flomax is on board. Without that medication, it's stop/start and a prolonged painful process. I did manage to see my favorite urologist, Dr. Jeremy Lieb, and he said everything looked good to him although someday...maybe... we might have to look at doing kind of a roto rooter procedure. He assured me that I would be checked into the hospital and heavily sedated. He also seemed to continue to be in favor of the idea of taking 20 to 40 mg of sildenafil daily just to ensure regular blood flow to the penis. Mr. Happy needs blood just like one's big toe!
Speaking of Mr. Happy, he's doing rather well. Two years after radiation, I'm happy to say that even without the prophylactic sildenafil, Mr.Happy can still rise to the occasion although not quite with fervor of an insatiable 20-year-old, yet with regular nocturnal and morning tumescence as common as they would be for most healthy males. Orgasm is still very possible and actually intense to a level that is actually quite painful about 15% of the time. The other 85% is unmatched in my lifetime; intense to the point I'm weak after. There is no longer ejaculation or production of semen.
Something that has been of concern is what I have assumed to be an internal hemorrhoid. I had written it off to long-term use of narcotic pain medication. Not painful, not really bothersome other than the fact that it bleeds during during BMs about 70% of the time. After deciding it was time to get back into dealing with things like this post 2020, I went and saw a gastroenterologist by the name of Dr. Salvador Guevara. Good doctor, easy to talk to, obviously knowledgeable, just the right amount of humor and very respectful during examination as well as consult. Indeed I do have an internal roid and we are going to try and deal with naturally as opposed to ligation via banding. I found it rather interesting that as Dr. G was examining me his first question was," have you had radiation?" I advised that I had two years earlier and he said he could certainly tell. That was it rather stark reminder. Regardless, I'll see him again in about a month after I've had time to try natural remedies.
My old friends CIPN (Chemotherapy Induced Peripheral Neuropathy) and fatigue accompany me wherever I go. Fortunately I am fairly used to them and they are generally well controlled with medication.
So that's the physical stuff.
What I want get back with the oncologist about it is new treatments that show a lot of promise. Treatments by which radioactive molecules specifically target prostate cancer cells......PCa Smart Bombs if you will. New, improved treatments that use immunotherapy. There's been quite a increase in research and progress in this area of treatment and I've been fortunate enough to live longer than the estimates said I was going to. Who knows, maybe I can take advantage of some of it.
The hitch is that with many of these studies is they usually insist that you also take hormone depriving drugs. They want you castrated. And I refuse to believe after seven years of living with this disease, six of them of with testosterone coursing through my veins, that these new therapies can't be effective unless you also castrate a man. Medicine must come up with and the scientists simply have to figure out new, non-damaging treatments for this disease. They must think outside the box and quit jumping immediately to surgeries and drugs that are so damaging to a man both physically and psychologically.
That's what I want to be able to talk to the oncologist about. This will be the first time we've seen each other or communicated since March 2020 and I'm hoping that he can give me some guidance and think outside the box a bit.
There is no doubt in my mind that if I had agreed to and taken all the treatments that various oncologists had suggested and, in some case, all but insisted that I take, that I would be a very, very ill man .....if not dead by now.
I'll check back in after I have that visit and I hope to be able to post some of the treatments I've been looking at and will talk with the good doctor about. As always, if you're out there, diagnosed, scared, don't know what to do, who to talk to or where to turn, please don't hesitate to reach out to me.
Because I know exactly what it feels like.
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