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.

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. :)

Fatigue - #4 Down

fa·tigue

/fəˈtēɡ/

noun

1. 
   
2. 
   
3. 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. 
4. 
   
5. 
   

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.

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!

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.

And.........1st Round Completed.......I Thought I Was OK Till About 10.....Then I Felt The Burn

I completed Round 1 of SBRT today.  To the John Muir radiology staff's credit, they went out of their way to make sure I felt comfortable.  At the end of the session (once started, takes about 15 minutes and you feel nothing), the head of the Dept., Dr. Bice came in to check on how things went.I advised they went great.........now if they just could have done that during the simulation a week earlier. BTW, doesn't the guy in the pic look so relaxed and happy?   ;)

I really needed  to urinate when I got home but I'd also had a lot of water so I didn't really take that as a side effect.  But my, oh my, about 930pm I began to feel like someone had left a hot coal in my pelvis. My testicles also ached.  I finally called the physician on call and he advised me to take some advil or tylenol, or both and I advised him I had taken celebrex as well as my narcotic pain meds.  His response was that yes, some men "have an immediate reaction to the radiation.....it should go away in a couple of days."  So, like right before we do it again on Friday.

I wan't expecting this much discomfort this quickly.  It may be a long 2 and a half + weeks.

And It Seems We Are On Starting Tomorrow, Tuesday, March 5, 2019 ........No, Really!

I met with the lead radiation oncologist working my case today and he reviewed the MRI and CT scan single shots as well as the overlay of the two. My goal was to understand exactly what we were radiating (killing), what the bleedover into normal organs/tissue would be, double checking that we were on the same page as far as maximum GYs (radiation dosage) to be delivered over the 5 sessions and once again verifying side effects that I should expect.

The RadOnc had already agreed a lower dosage of 35gy (7 gy x 5 sessions) rather than the 36.25 gy which is usually protocol.  We confirmed that today.  He also showed me the pictures, or as I prefer to call them, the road map.  The MRI slices as well as the CT scans, especially when combined, gave me a really clear view of my anatomy, the gold markers, the SpaceOAR (which is doing an amazing job of pushing the rectun away from the target zone of the prostate).  That's the REALLY good news.  I felt like that this procedure would help keep radiation away from my poop zone and the MRI sure seems to confirm that.  The RadOnc said he still thinks I'll have issues there. I, on the other hand, feel that if I have ANY, they'll be mild. This RadOnc is not the one who implanted all this gold and polyethylene glycol in my pelvis and I sense jealousy with the guy who DID do the implants.  And that's silly because the Doc who did the implants urged me to see this other RadOnc if I was considering SBRT as he felt he was the best in the field in the area.

Silly damned physicians.

It seems I've been heard regarding the couple of issues I had concerns about and that makes me happy that I asserted myself after having been seemingly ignored.  It seems the concerns have been addressed department wide and that means the next person might have it a bit better.  And that makes it worthwhile to me if I can save the next poor bloke from a similar lack of listening,  In a medical setting, men have as much desire to be treated with dignity as women do.

Tomorrow at 4pm PST, I'll get my first session of SBRT.  I'm told that if I do have side effects, they'll likely come after session 4 or 5. I'll likely have a sense of urgency to urinate and a burning sensation when I do. The urgent sensation will happen even with an empty bladder it seems.That should be fun.

Onward.