Wednesday, June 12, 2019

Almost Three Months Out........How Am I Doing?




June 19 of this year will mark three months since I had my five sessions of high dosage, SBRT. In a generalized sense I can say that the side effects have been really only two, fatigue and urinary discomfort.  I sleep well at night. I rarely if ever have to get up to go to the restroom. I think that I made good choices in terms of the spacer device. And I'll find out soon what affect the radiation has had on the tumor. So here’s to the nitty-gritty. If you don’t like reading about the male reproductive or urinary systems, kindly flip over to the Disney Channel at this time. :-)

U/G Toxicity

I’m still experiencing some issues with burning during urination and I still take the generic Flomax and, on occasion, the Azos, although I am experimenting and I think that the Flomax may be enough and I may need to take only a small amount. And for this we are grateful :-)  as noted before in this blog, I’ve never had any problem with urination whatsoever aside from a brief episode in roughly 2000. So the experience of having extreme burning during the process and having issues urinating was new to me.  But what I can say is that in my research, three months seems to be the median for most men to get back to baseline, like wherever you were when you started, and I feel as it seems I am rapidly approaching that. I’ve had no incontinence or any of those issues (so grateful), it’s just when I’m not medicated and I got to pee,  I need something to grab onto something.......or a bullet to bite:-).I’m grateful to my physicians and rad techs for doing what seems to be a good job on this procedure.

Rectal Toxicity

In terms of what is to be expected from radiation in that area, I’ve been extraordinarily fortunate. I had  a couple of days where there was a little bit of blood and a couple days where it was kind of painful to pass anything.  But other than that? I’ve just had no problem whatsoever and I am more grateful than I can possibly say because it really would piss me off and make me feel like I’d  made a poor choice, if I had to deal with that. I strongly believe that the choice to make space with SpaceOAR, as performed by the highly skilled and compassionate,  Dr. Kenneth Chao, made a huge difference by pushing the rectum a few centimeters away from the "danger" zone. Performed masterfully and with care and consideration of my thoughts and concerns. I’m convinced it made a huge difference because when you’re shooting radiation at peoples organs, a few centimeters makes a big difference. He knows this and he made sure that I got those few centimeters. Hell of a guy, compassionate and knows exactly what he’s talking about. A+  rating from me! If you are thinking  radiation of PCa, consider SpaceOAR. A few centimeters can make a lot of difference.

Sexual Function

 I am relieved that I’m doing pretty well in this department. Giddy is a word that comes to mind. Although I’ve been taking 40 to 60 mg of Sildenifil daily as a prophylactic to keep blood flow to the region, I quit for a week  as an experiment, and I’m happy to report that I experienced both nocturnal and spontaneous erections during the day with a frequency that a man approaching 60 who has had the shit beat of his body should be pleased with😎  I think men, regardless of sexual orientation, will understand just what it means to be able to wake up with an erection or realize that you have one in public for no particular reason. That’s the sign of a healthy penis and a healthy penis is the sign of a healthy male. I need all the signs of health I can find and I particularly like this one just for the record...lol. You’re welcome!



Fatigue 

 My arch nemesis. It doesn’t make a difference if I’m in bed for eight hours or 12 hours, I wake up exhausted. And usually in pain, despite adequate medication. I knew this would be part of it with the SBRT.  I knew it would probably remind me a lot of hormone deprivation and chemotherapy. Bad fatigue is a real thing and I just try to push myself through the day to the degree that I can. I try not to let this wretched disability keep me from working once or twice a week or helping out a friend or just simply being nice. But we’re getting there, we’re getting there :-)

 In the midst of all this, I will complete a move to a dear friend’s home in to the master bedroom of the home (I’m still wondering what I did that gave me good enough karma for me to get the master bedroom). But I am excited, I am honored, I love this friend and her child, OK he’s not a child he’s 21 years old, but still it’s a family. We share similar interests but I think we also understand the need for some solitude once in a while. I’ll be able to cook which hasn’t really worked out well where I am at and that’s really important for people with a live tumor still in their body.

Cannabis/cannabis  oil

I continue to use high CBD/THC cannabis and cannabis oil. Every doctor I’ve had, from the one in Texas to the ones here have always said, ‘I’m not sure what you’re doing but you should be very sick right now, so keep doing what you’re doing.’ That’s about as far out as most in these will go in their suggestion to use CBC/THC as a not only a palliative drug, but also as a quite likely cancer inhibitive and, in many cases, curative.

General Pain

The neuropathy continues to be what it is and, while tiring, I at least am familiar with it.  It is a constant presence in my life and severely limits how much I can physically be on my feet. Pain meds deal with it fairly well!  What is new is a usually quiet area.  I have a constant, dull, throbbing pain that can, at times, escalate to a sharp pain in the lower right part of my abdomen, high above the testicle.....on the same side where the worst of my PCa has been.  Kind of think of it as the right pelvic floor.......and we will see.  But I can tell you that walking around daily feeling like you've been kicked in the groin is tiring.

That's where I'm at currently.  About to move to a new residence and my goal is to build my body back if I can. Also will have the follow up MRI next week.

Cheers!  And thanks for all the support.









Friday, April 19, 2019

One Month Out.......Seems to Be a Mixed But Largely "So Far, So Good" Bag






Last SBRT treatment was one month ago.  Here's what I can report.

U/G Toxicity:

Still having pain/burning during 70% of my taking a leak.   The flomax and Azo help......A LOT.  But the AZO does stain......boy does it stain.  SO, if you're like most guys, especially with longer urethras, and no matter how much you squeeze and shake, there's still a drop or two......don't wear tighty whiteys and take some paper towel and "protect" your clothing. 

Ahem. 

I've only had a couple of instances where I needed to go like NOW!  lol.  In one case, I made it down the hall just fine.  In another, where one roommate can spend 45 mins or more on the can, I recalled I had a plastic juice jug on the shelf that was almost empty.  It sufficed.  But those are really the only two times in a month since radiation ended.  That's not bad.  So relatively minor urgency/pain issues with urination.  Based on my research prior to the nuking, the overwhelming majority of men return to where they were (baseline) prior to treatment at about 3 months.

Rectal Toxicity

I am relieved that the bleeding I had has ceased.  Only on the first day or so after the 4th and 5th treatment did I have bleeding that concerned me, but it has resolved.  BMs are pretty normal and, while I still have pain if that area is "full", if I can urinate/have a BM/get real flatulent, that tends to knock down the pain and discomfort quite a bit. 

I am thankful to Dr. Kenneth Chao for recommending and proud of myself for researching and figuring out how to get myself on the table for the SpaceOAR implant.  There is no question that it helped protect the rectum and I am quite relieved by that.  Good call Scott!!  I'm also glad I had it done under general.  Win/win! 

Sexual Function

While it can take a while for damage to the penile bundle of nerves to make itself evident, so far, so good.  I've been taking sildenafil on a prophylactic basis since before the radiation started.  I continue to do so to keep blood flow to the penis increased.  Erections are quite adequate so far.

Ejaculation is becoming different.  As I was told to expect, when they dry up the well, not much comes out. So yeah, it's a bit less liquidy and will probably become even less so. But the good news is, at least right now, an orgasm feels as good as it always has.   Fingers crossed.

Fatigue

Fatigue (i.e. - extreme tiredness resulting from mental or physical exertion or illness) remains my nemesis.  I can sleep 6 hours or I can sleep 12 and I wake up feeling wiped out.  I try to at least walk or lift weights (10-15 lbs) daily.   But I have a ways to go on the fatigue thing.......*sigh*

General Pain

Neuropathic pain in my extremities has experienced a slight uptick since the first of the year.  Typically fairly well controlled with the meds I currently take, I've kind of resigned myself to filing this in the "This Is Just The New Norm" file.

I got a PSA blood draw (and CBC, CMP as well as testosterone) done today and I'll meet with Dr. Lo next Tuesday.  It's not uncommon to see a spike in PSA after the radiation as the prostate swells so I won't be alarmed if there is an uptick.  I would imagine we'll do a MRI within 6 months to see if we're keeping the tumor extensions from invading the bladder and/or rectum.

Thanks for all the prayers, good wishes, text messages, check ins and just being my kind, caring friends and readers. 

You all give me strength.

Sunday, March 31, 2019

13 days out… Lingering Fatigue, Hurts When I Pee and Cancer is Impacting Those I Love

I’m now almost  two weeks out from the last session and I must say that the fatigue is serious. I did manage to get out and go for quite a walk todayAnd get some sunshine. I have been pretty exhausted since I got home. But my experience with exhaustion and fatigue issues just have to keep at it as best you can.

Urinary discomfort is manageable with the two medications. It’s not perfect by any means but it’s  manageable and no longer something  I have to grab my teeth over. During my research seems that most side effects, be they sexual, urinary or bowel,  seem to peek at plus or -3 months and then return to baseline.  So I may have a bit more discomfort to deal with. I am having absolutely zero continence issues for which I’m very grateful and sexual function seems as normal as it had been prior. to the radiation, but sexual side effects tend to show up a few years down the road.

What’s really been difficult for me this last week is not I have a cancer and been fighting it for five years and made RadOnc part of the mix.......no what’s  really been difficult for me has been that I lost a dear friend to pancreatic cancer and another dear friend has been diagnosed  with breast cancer. Unsure as to status just yet.

Yes, I get really tired of that shit.

Tuesday, March 19, 2019

5 SBRT Sessions Complete! But Now We Have a Bit of Bleeding and Cramping....Yay



I completed my 5th and final SBRT session today.  To say that I'm relieved to have that over would be a vast understatement.  Now it's on to healing as quickly as possible.

Tonights sides effect du jour are 1) severe cramping kind of towards the front of my lower abdomen just behind the pubic bone (any guess where the P gland is?!?!?) and 2) roughly an ounce +/- of bright red blood in a very small BM.  Both of these are new to me and I figured blood might be worthy of calling the Radiation Gods about. The Goddess on duty said that I should keep an eye on it and if it gets worse or is still happening tomorrow morning, I might need to hit Urgent Care, especially in light of the fairly severe cramping.

Sexual function seems as well as can be expected for a guy with the aforementioned problems as well as who has just gotten urethral burning under control (thanks be to ALL the appropriate deities, particularly Cheuksin, the Korean toilet god! as well as flomax and AZO).  Yes things work, but that has not been a primary focus as one might imagine.

But I'm happy to say that, with the exception of the initial miscommunication regarding personal needs and preferences (or, as one physician called them, "quirks"...... choose your words carefully Doctors; they matter), I can't speak highly enough of the techs, MY nurse navigator (her name is Christie and she will be someone whom I know I can email and ask a question of or just vent to.....she's just that kind of of empathetic person aside from being a very good, very specialized RN). I'm lucky to have gotten her.

My techs, Shari and Susan, went out of their way to make sure I was comfortable for each of the 5 sessions.  Thorough about keeping me advised of what they were doing, using draping consistently and thoughtfully and just being warm and caring made this so bearable.  They even made sure I got some Motown to listen to.  I appreciate them on a deep level.

The physician that I've dealt with at this facility, Dr. Massulo, is actually a very kind, understanding, knowledgeable man which was hard for me to realize during the planning session and caustic injection of urethral dye.  It has become clear that he regrets not having seen my original communication as he stated he would certainly have taken more time and been gentler in his approach.  He's a good guy.

I also am so appreciative of the social worker Susan, who has helped relieve some of the stress that goes with this.  Not only a nice person, but a very kind, compassionate, knowledgeable person with a warm smile and kind heart.

Now, to try and get my stamina back ASAP!  I spoke with their nutritionist today and I'll speak with her again as I need to replenish the coffers, both nutrition wise and the bank account) which have become rather drained after the medical expense/treatments of the last few months.  I also found out two nights ago that my generous and kind roommates will likely move to Seattle as the younger one seems headed for a $200k plus Amazon job.  I am not part of the equation as they plan to downsize substantially and, quite frankly, I annoy the hell out of the older roomie. In all fairness, they've been together almost 40 years, 8 years longer than I've known them and the younger of the twos primary responsibility is to care for his husband.  I'll always be grateful for what they've done for me.

So,  radiation poisoning, blindsided and all, I'm doing relatively ok. :)

Friday, March 15, 2019

Fatigue - #4 Down

fa·tigue
/fəˈtēɡ/
noun


  1. It's real and when you already struggle with it, nothin' like some enhanced photons to enhance the fatigue.  I was pretty good and fairly energetic Wednesday after number three but not so much yesterday, then was fair this morning and on the way to treatment but within 2 hours after treatment, I felt like someone had thrown a heavy, wet blanket over me. 




Physical symptoms:  my low abdomen feels very "full" almost like I'm very constipated but I know I'm not; urination has become quite a feat, requiring grit and determination.  I know also have two types of meds to assist with pain (AZO) and getting started (Flomax).   Hoping for relief by these in the AM. Still some pain right at the anus.


That's it for tonight folks.

Thursday, March 14, 2019

SBRT #3 Done and Two to Go......Side Effects........Note: The Following contains no clinical terms and may contain words like pee, poop and boner




OK, decided to skip the clinical terms for once in a great while.......cuz, well......I'm always so clinical!   Nope, this is raw so hold onto your bonnets!

Yesterday was treatment 3 of 5.  Number 4 is day after tomorrow and then the final one next Tuesday.

The good news is, I did not feel like someone dropped a hot coal in my pelvis last night, nor today. That's welcome. I mean, thank you! I mean it's so nice and I slept well!  I can also say I have not felt any major urgency to pee nor poop today.  I have tried to be conscious of when I felt like I even might need to pee or poop and I did so without waiting.

Pee

The not so good news is that burning when I do pee is becoming a more common occurrence each day as is a slow start.  That's different as, other than once about 20 years ago, I've never had any problem taking a leak. Zero.  Zilch.  None.  Even at my "advanced" age with my enlarged, disease ridden prostate, I've just always been able to pee....at will.  But, that's how guys are built (BAD design flaw! I mean REALLY bad....but I digress), with the pee tube running right through The Manjuice Gland, which is prone to gettin’ swole and The Big C.   As they use 3d shaped beams to try and kill tumor and gland, the pee tube and, to a lesser extent, the bottom of the bladder will get radiation.   And that means irritation, swelling and........possible damage (although after doing my due diligence and reading/comparing the studies, that tends to be on the low end of the complication scale). Right now, I'm going with irritation and swelling which, in most cases, subsides in 3 months +/-.  In the mean time, I'll meditate and run the faucet. 😳 May make slight grunting sounds as well.

Poop

The so so news is that my poop habits are a bit different (shape.....can you say pooplet?, frequency)  but I'm pooping and there's been very little diarrhea and none in the last couple of days........and for this we are grateful.  Not so fun is the rectal burning I feel which is not too dissimilar from that feeling your butt hole gets after you ate a bunch of habanero tacos topped with some ghost pepper sauce. OK, I'm kidding, it's not that bad.  But when it is, well, it is.  But this is still a minor complaint and I once again am happy about having had the SpaceOAR gel implant injected in my taint at the same time the gold bullseyes were placed.  My Rad nurse said she had seen two other men go through SBRT and they had few to no issues and that it was "a very smart thing to do."  I agree.  OK, so hire me as a spokesman SpaceOAR!  I'm not expensive.

Pecker Performance

Surprisingly quite good. While I had used ED drugs at times since the chemo/hormone regimen, I could get a hard on generally without them.  As a prophylactic measure, I started taking 60 mgs sildenafil (gen Viagra) which works by increasing blood flow in arteries and certainly in the groin (which feeds important nerves) and in Mr. Happy (I'm sorry, couldn't bring myself to write "dick"). Several studies seemed to show benefit and a couple were inconclusive about  it, but things feel quite normal in that ability as one might expect with the father's little helper running around in my system.  Most men come back to baseline function within the previously mentioned 3 months +/- although at 5-7 years out, function seems to take a hit.  So I'm optimistic in the short term that things will be normal, at least for a few years.

Thank you for letting me skip the clinology! All future posts will be clinical in nature.....but this was kind of freeing!😛   Burp!

Thursday, March 7, 2019

The Day After SBRT #1



As mentioned, last night I flat out hurt.  I finally got to sleep about 3am and did manage to sleep until about 9.  The pain was replaced with more of a discomfort in the pelvis.  My testicles still ached but not as much and I noticed a very mild discomfort during urination. No rectal discomfort at this point.

One of the things the on call guy said last night was that the radiation typically causes the prostate to initially swell.  Marvelous!  Like I had so much room to spare anyway! Ha! Ain't no room at the inn folks.

 More importantly, I don't recall that particular issue being discussed nor do I recall reading about it in studies.  Everything is written in terms of "GU Toxicity Grading  1 to 4" so it's more of a "do you have to get up at night more than x times a night" grading system.  So I'm curious about this swelling.....how long? How big?  How bad?  Details please. I can deal with what I expect (at least I think I can), but I have trouble with medical surprises.

I'm back to painful tonight.

Yeah, I wasn't expecting a lower gut punch and a dodgeball to the groin feeling quite that quickly.

This too shall pass.

In a while.