Tomorrow is the Next Onc Visit.......and Also Some Thoughts On What Some Will Endure

I follow up with Dr. Ernest Lo, my "regular" oncologist, tomorrow and we'll discuss my latest PSA test which shows a leveling off after the drastic drop post radiation.

My guess is he'll say, well, it's headed in the right direction but we probably should just keep an eye on things  I know my Dr. Lo  ;)  Good guy and as we approach 6 years of this battle, I'm at a pretty good place mentally.  Do I get depressed?   You bet.  Does the right side hernia cause me pain?  Oh yeah.  Neuropathy?  We're old friends.  Fatigue?  See neuropathy. But I'm still here and quality of life is all in all good and tolerable.

Part of this is because I've been selective about and willing to say no to certain treatments.  I've felt like if things got THAT bad, it'd be time to talk to Palliative Doc about a Marilyn Monroe Cocktail.

Some men will do ANYTHING to live longer.   I'm not in that group.   Please see what some men go through:

One woman wrote to a blog I follow:

Hello. Thank you for including me. My husband has Alzheimer’s so I’m doing all the research for him. Dx 2010, EBRT, PSA began to rise by 2013 but no bone mets till 2018. Now on Lupron and Zytiga. Can anyone share how long that combo was effective? Thank you!

Rest assured people that love me, if I have Alzheimers AND metastatic PCa, just lemme go........

One man wrote:

Hi this is my first time on here. I want to give y'all a quick run down of my history.  I was diagnosed with stage 4 metastasis prostate cancer on 2/14/10 at 8:30 am i had a rapid prostatectomy on 8/25/10 then a double casteration on 8/28/11 i went into remission until 4/4/14 from then on its been a roller coaster ride for me and my wife.  I've had 4 different cycles of chemo and 3 little zaps of radiation.  We went on a little get away to South Carolina on 12/28/18 to 1/5/19 right before we left my oncologist had me do 2 different scans . On the flight back i was in some of the most severe pain i have ever been in my life. I ended up going to the emergency room and they did a MRI of my lower back . They found that my cancer is growing at a very fast rate. On my t-10and t-12 is basically separating and it kept me from walking . I made an appointment for my oncologist she told me there is nothing more they can do for me . I have done all the trials and stuff . They gave me 4 months to live. I'm on hospice now and just in the past couple of weeks i can tell my cancer is spreading.  Im having to use a walker all the time now and telling my left leg to walk . My hospice nurse explained that my cancer is spreading to my brain now and is almost acting like Parkinson's disease. The only good thing is me and my wife went to the funeral home and made all my final wishes . Idk if anyone else has done or considered this but you wont believe the relief it takes off your loved one. The only thing i have left to do is but my URN online it is so it is 40% cheaper to buy online and your choices are far greater. I think i got everything out i wanted to say . My prayers are with everyone going through these difficult times both the person and their caregivers/wife. God bless

Can you imagine all the treatments he took (surgical castration!)?  The multiple rounds of chemo.  The pain.

One reason I live and struggle to live in California is that when my time comes, I don't care to butcher myself, to poison myself again, etc.  If it's a matter of keeping myself comfortable, I'd talk with my Docs.  

But Cali has a Compassionate Death Act and the conversations have already been had.  I won't go down a slow painful road.

Heartelf thoughts to the man and his wife in SC.

Checking in Before the Next Onc Appointment

As we begin fall of 2019, as I approach my 58th BD, as I come upon six years of trying to outwit this monster and I approach the next Oncology appointment, a check in is due.

I find myself living in a new home with tolerable finding work (that which I can do) at twice the rate of pay and getting back to base level physical function (by and large) 5 months after 5 sessions of SBRT (high dose radiation over less sessions) in March.

OK, details:

U/G Toxicity 

Largely resolved and back to normal.  Once every few days, I'll have a sense of urgency and one day (1!) I was unable to stop the flow.   That's a bit disconcerting but not bad.  I keep a hospital grade urinal behind the bed just in case but rarely feel like I have to use it.  Pain during urination is down to, at worst, a 2 (1-10) and is usually 0.  I still take a low dose of generic flomax but I haven't had to take Axos for at least 2-3 months.  Going number 1 ain't bad!. Sometimes I stand at the urinal and just smile :)

Rectal Toxicity

Zero.  None.  Nada. I firmly believe that getting the SpaceOar gel implant (see previous posts) was one of the wisest things I've ever done.

Sexual Function

Largely back to baseline. I still take sildenafil  as a proactive/blood flow therapy, but I can get a healthy erection without drugs.   I am very surprised and relieved by this.

Fatigue

Still a struggle but I have had more good days in the last week or so.  I will likely always struggle with this (per my gut feeling and various physician statements).   So I try to do what I can.

Neuropathy

An ongoing issue.  It keeps me from being on my feet more than 4-6 hours lest I risk being in excruciating pain for a couple of days.  Various physicians have said, some recently, this may never go away.  Thanks chemo.

Now all that stated, let's talk numbers.  My last PSA was a 6.0 whereas right before the SBRT, it was approaching 14 with a rapid doubling time.  This is really good news as it gets me back to where I was in March of 2018.

I've also been advised I have a small hernia (but large enough to notice) on the right between the scrotum and thigh.  This would explain the pain in that area.  I'll decide later if/when I fix that.  (I tell ya, my body has just decided to blow all the sockets!).

So I kind of land in a happy place.  I THINK the radiation/gel implant was a very smart move (let's talk again next March......if I can still pee unassisted and get any type of erection, I'll still make that claim!  lol).  I THINK that the tumor is shrinking and posing less of a threat to other organs. I THINK my UG/sex function is getting back to where it should be. I KNOW my bowel function is back to A OK.

I have struggled with some depression and anxiety which I think is largely situational.  But I'm exploring some counseling.

Finally, I'm at a place this could go any direction.  A dear friend diagnosed a year after I was has been taking hormone depriving drugs for a year + as well as undergoing IMRT over 40 sessions.  Despite all that, his PSA is doubling every 2 weeks.  But I could also be very lucky and this could keep the cancer in check for some time.

It's a roll of the dice.