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.

A Learning Opportunity for Myself As Well The Medical Professionals

As I mentioned in the last post, I underwent the planning session for the 5 upcoming SBRT sessions which will begin next week.  I had urethral pain that evening and quickly resolving discomfort the next two days.  But I was still quite disconcerted about what I perceived as a lack of attention to my concerns as expressed in the email I'd spent a good deal of time writing.  So I decided to express my thoughts about what I perceived as a lack of attention to my anxieties to the Nurse Navigator as well as Department Head.

The Nurse Navigator was out Monday, so the first communication I received was from the Department Head.  To his credit, he said, " It was very clear about your concerns—which, if we had all read it closely, should have been our concerns as well.  You did fine job of communicating, we don’t seem to be listening very well."  This was followed by contacts from the RadOnc in charge, one of the Rad Therapists that worked on me as well as the Nurse Navigator. I'll sum it up with I think my concerns have finally been heard.

What I learned from this experience is that if you have a past sexual trauma in your life that might cause you excess anxiety/fear, tell your new physician upfront, in blunt terms so (hopefully) they can treat you with a little extra care and instruct staff to do so as well.

What I hope the staff learned is that EVERY patient should be treated with the utmost respect and concern for privacy as IF they might have a traumatic episode in their past, as IF they might feel vulnerable.........as if one in every ten of their male patients has been raped at some point in his life.  Medical staff who have years of experience, as the ones treating me do, are the folks you want doing invasive things with your body.  But with years of doing the same job, sometimes humans can forget the little things that might make a HUGE difference in patient experience.

Maybe we all learned from the experience and the next patient's experience will be better.

The Half Day Planning Session for 5 Session SBRT and a Plea for Medical Personnel to Communicate Well (That Means Listening Too)

(1) “The needs of the patient come first.”(2) “Nothing about me without me.”(3) “Every patient is the only patient.”

Today I started the morning at the the gluteal crack of dawn. It began with a 3T MRI after which I switched to water intake for a SBRT planning session. Gotta pump up the bladder ya know. This took place at John Muir Cancer Facility in Walnut Creek California. Moving here and taking care of my health via this network (I use Concord for most everything) has been one of the best things I ever did for myself. The vast majority of the of the staff, techs, physicians, and RNs have been very kind, empathetic, understanding of my fears, patient with them and just down right lovely human beings who are willing to work with my concerns while getting the job done. My specialists (oncology, the 1st radiation oncologist who did the implantations and urology) have been with different practices or have their own practices that are associated with Muir, but virtually everything else I've had done has been at Muir and they really have been quite good. That said, my initial experiences with their radiation oncology department have been less than stellar after couple of difficult situations that I feel were largely failures in communication.

After the new MRI is done with an empty bladder, one switches to a urethral CT scan and full bladder. Now I'd read that having to "hold" so much while the session took place would be really difficult and uncomfortable. I had no problem and, while I could certainly have relieved myself, I was not uncomfortably "full." The insertion of the dye into the urethra was the "worst" part. There was  discomfort and pain, but it thankfully didn't last terribly long. More transparency on that as well as a physician that I'd met more than 45 seconds prior to the injection of stinging/burning substances into the opening to my penis......as I'd requested....more than once, would have been appreciated. Even if he couldn't have met with me while I was clothed and sitting upright, a simple comment by the physician such as, "Hey I did read your email and I understand you really don't care for this and have had bad, past experiences.  I can't promise I can make it painless or without discomfort, but I will do my best to make it quick and I understand your concerns." That was my only real complaint about the physician (I mean we barely spoke for a minute before I was gasping and biting my lip so how do I even begin to know what he's like?). Maybe next week we can take 5 minutes for a conversation while I'm sitting upright and clothed more or less. Communication.

The Rad Onc Nurses could have perhaps payed a bit more attention to consistent, careful draping; I'm not a prude and have gone to nude beaches, skinny dipped with friends, etc, But when one has a life altering, incurable disease, there is not much you have control over. As a matter of fact, hardly a damned thing... and to lay with your genitals uncovered with or without a penile clamp in place really isn't necessary unless the medical professional is working in that area and there were certainly, at times, reason for them to do so as they did their work. I seemed a good deal more ill at ease about it than the 2 Rad Onc Nurses but of course, they do this regularly and have 20 years experience, which I respect and am quite grateful for. But they seemed a little less concerned with draping than I would have liked.  Or if I couldn't be draped for some extended length of time where it really was required, a simple comment of what was taking place would have sufficed. I didn't feel like I got that. Communication.

Please note that these are relatively minor issues, but important to discuss. I spent time writing an email to be distributed to the staff I'd be working with and I'm told and don't doubt that is was shared.  But I feel strongly it was not read or, if it was, little attention was paid to it.  It's no secret that men tend to stay away from the Doc as it is. Because I had the luxury of having the same PCP for well over a decade, I knew he had and always would make every effort to respect my dignity because he understood that was part of trust between a medical professional and patient. Every effort should be made to respect the privacy and dignity of all patients, first because it's professional and secondly, because there are men (and women) who wont go in for intimate checkups if their basic dignity is not respected. I felt there was a fair amount of time spent standing and talking with each other, and ME, while I layed there undraped. Now YOU may do this every day and it may just be another set of genitals to you, but I DON'T do it everyday and these are MY genitals. Do your best to afford me that dignity in the same way I would hope to afford to you if I were the medical professional and you were the patient.  Treat me as if I might have had a sexual assault in my past that makes these procedures difficult for me.  Treat me as if I feel vulnerable in this situation.  Treat me as if something I've brought up more than once might be of more than average concern to me. Communicate.

I know that aggressive, high GL PCa is challenging at best. I'm glad I've found a team that I think understands and is in synch with MY goals and needs. While I do have this stringent criticism, I did feel that I was in the hands of professionals with over 20 + years experience.  My criticism is not of knowledge, but rather "bedside" manner, making every effort to know your patient and practicing simple elements of respect.  But most of all.......

communicate.

Next week, on to the 5 SBRT sessions. More to follow.

And Yes, We’re On. No! Really!

 After a couple weeks delay based on insurance and hospital goof ups and, admittedly a weekend delay on my part as I did additional research, I am now scheduled for this Friday at the gluteal crack of dawn. MRI at 7:30 AM. Probably done by about nine or so. Then on to the planning session where I must have consumed I forget how many cc of water but it’s a lot. There we will take CT scans of my pelvis, we’ll do what’s called a mini urethrogram (Kind of sounds like one of the least loved Disney characters, doesn’t it?) to delineate the base of my bladder, the penile bulb and, obviously, the urethra in hopes of minimizing any damage to these organs. I’ll also get some sexy tattoos on my pelvis so that in addition to the gold inside my pelvis, Ill also have a visual on the outside to line things up with. Accuracy is important here. I’ve always wanted tattoos but never have gotten any so maybe I can get them to do like, I don’t know, little stars or something.  I have also can I go on by the theory that the more markers that everybody has to look at both inside me and outside me, the more likely they are not to miss like say, I don’t know, if somebody (me or the tech) sneezes or something.

I’m in a pretty good frame of mind about all this. Apprehensive? Yes. A bit anxious? Yes. Not crazy about anything being inserted in my urethra? No not really at all. Concerned about complications immediately following the five sessions as well as long term? Very much.

But I’ve done my research and I know that I need to do this to hopefully prevent far worse treatments and or surgeries down the road.

*Deep breath’s and big smile*

14+ Studies and a Decision That Can Change Everything

When we last spoke, I'd just had gold implanted as well as a biodegradable gel in preparation for radiation therapy to decrease the size/scope of the prostatic tumor that presses on organs in my pelvis.

Due to insurance/hospital bureaucracy, I had (was able to take) some extra time and go down to UCSF Medical library and be guided by a research librarian on how to pull up THE most recent data on my choices and I will always speak highly of research librarians.

When I crunched data and read the studies (BTW, I really had to up my knowledge of radiation measurements/dosages/terminology......but it was so vital to do so), I came down to about 14 studies I could put on a spreadsheet and really compare.  There are no "good" choices when dealing with an aggressive, rapidly expanding tumor that is not curable.  But here's what I came down to.

The 5 session SBRT radiation treatment makes the most sense. While there tends to be a spike in GU toxicity in the first 1 to 6 months post treatment, it tends to get back to baseline for the overwhelming majority of men by 3 months.  Sexual function takes a hit but that's true regardless of the treatment.  But this seems to be less so with this hypofractionated treatment and is usually treatable with those famous meds we've all seen advertised again........and again........and again..........and again.....and again.......ad nauseum. Trust me, if I get a 4 hour erection, I'm buying a Superbowl ad to announce it!

Colon function, as long as we get started quickly, probably shouldn't take to much of a hit due to the SpaceOAR and the accuracy of the machine they use. And any hit it does take, according to studies,  should resolve quickly. I'm not too concerned there.

But I'd be lying if I said I wasn't anxious about treating my body with radiation.

I am.

But it seems to be the best choice of the ones available to me and one of the few that I am willing to introduce into my physicality.

I have to do something.  I hurt. Not just discomfort, but pain.  My joints and peripheral nerves have hurt for some time.  Now I have perineal as well as pelvic pain, which are new experiences for me and it's quite different. So I have to bite the bullet and try to kill off as much of  that damned tumor as I can, which means pretty much killing my prostate as well as assorted nerves, to relieve (one hopes) some of the new pain and keep me out of the operating room within a few months when surgeons would be trying to re-plumb things.

Chemo and the 8 months of Lupron (wretched stuff) really did damage my body in 2014 and doctors have often said I should have been on Lupron this entire time but I said no.  I chose supplements, lower stress, cannabis in various forms, gentle exercise in various forms, avoidance of conflict  as well as responsible attention to pain control.

The physicians have often said how "unusual" my cancer was and how it "didn't follow a normal pattern."  Well, this is when it gets kind of normal in the sense of a rapidly expanding tumor that threatens to invade vital organs. One might say shit just got real.......but it's always seemed real.

So the decision is made.  Just have to schedule an MRI and CT scan "simulation" session where they make a mold of my cakes (I'm gonna auction it off after this is done.....some foundation could use the $2-3!).  Oh, I also get to have a urethrogram during the CT.......look that up if ya feel like it :) . I am SO excited (emphasis on sarcasm).

But, I'm really at a good place mentally with all this.  Much better than I've been at times in the past.

So......

Color me grateful but still anxious :)   Onward!

PS:  If anyone would care for a link to the spreadsheet of studies I found most helpful, please leave a comment with a gmail address and I'll gladly share with you.

Operation There's Gold in Them Thar Hills Accomplished...Now, More Decisions and On To Operation Glow

Yesterday, I had four 24kt gold fiducial markers implanted in my prostate (there's gold down in that mine folks!! Don't throw my carcass to the vultures before they're retrieved!) and one SpaceOAR gel inserted between my prostate and the right next door, rectal wall. This is in preparation for palliative radiation to keep the tumor, which already has grown outside the gland, from perforating either the bladder or the rectum.

Today, I feel pretty good. Much better.  Really sore (can you say Ice Pack "down there"?) but much, much better than last night after the local completely wore off.  3 hour trip to ER to get pain meds sufficient so I could finally sleep at almost 4am.

I don't do pain well.

That said, I was totally impressed with the OP medical facility in San Ramon, the very kind, professional and empathetic nurses that took care of me, the anesthesiologist who, after I got her attention, understood and, of course, Dr. Kenneth Chao, my radiation oncologist who made this happen and seemingly did a masterful job with empathy and respect for my needs.   

As always, I bounced out of anesthesia quickly and, had it not been for some degree of soreness even with the local (hence the ice pack), I might have left earlier.  But I got a ride home from my lovely niece, Amber, and did ok till the local really wore off.  Then it wasn't so pretty.

So now I have to really drill down on do I do 5 treatments or 40?  Do I do it at the local hospital that's a 10 minute walk or the clinic where trusted Dr. Chao is which is about a 15 minute drive?  Now that the gel is in, the clock is ticking because it will be absorbed by the body within 3 months.  Therefore, more research and another meeting with each RadOnc to help make the decision.  I'm also pushing to meet at least some of the staff at each location.  I mean, whether it's 5 or 40 sessions, ya still have to have some idea of them just like I know my physicians.  Besides, ya gotta basically lay nekkid on a big Dr. Strangeglove machine that whirls around your pelvis.  Yeah, I'd kinda like to meet these folks.

But my mood is good.  I feel accomplished in what I've set out to do.  I feel loved.  I feel like I'm fighting this deadly fight in a good way. I'm grateful every morning (after I've had my juice). I live a life that so many people can only dream of.  I'm a lucky guy. I'm smiling.

If you care to read (I won't force videos on you ;) ) about yesterday's procedures, here are links:

SpaceOAR

Fiducial Marker Placement

And We're On! This time Thursday I'll Have 3 Gold Beads and a Biodegradable Gel in My Pelvis

It started  with a phone call from the woman at San Ramon Regional Medical Center to discuss prep for Thursday's SpaceOAR procedure.  I politely told Gloria that I'd be happy to listen but it was 2 in the afternoon and I'd heard nothing about if it'd been auth'd or not.  She assured me that there was just NO WAY that if she had it on her schedule it wouldn't have been auth'd. I politely said, well you still might just wanna double check with your business office.

Gloria did check with the business office and lo and behold there were no auths from United OR the hospital/physician network.  Imagine that! (heavy sarcasm intonation intended)  This led to almost 3 hours on the phone with doctor's offices, United, John Muir Hospital/Physician network and a couple of other offices thrown in for good measure.

Finally, right at 5pm, as I was holding for the UHC rep that actually tried to take ownership of the issue, my doc's office called and I clicked over and the nice young woman who has worked very hard on this, said good news, we have an auth......you're on.  I breathed a sigh of relief, got the auth number from the UHC rep and made a margarita.

It's not enough to have to deal with a deadly carcinoma growing at a rapid pace in one's body and taking treatments you really don't want to to keep from hurting more. No, you have to deal with the potential ineptitude of everyone involved, particularly that of the new MORE EXPENSIVE insurance company.  The wonderful woman at the Doc's office said if I had not been diligent in calling and recalling UHC, we probably wouldn't have know anything before late tomorrow which would have meant another rescheduling.

Where do I bill for my roughly 8 hours on the phone since December trying to make this happen? My Frustration on the Phone and Doing Your Work For You hourly rates start at $560 an hour.

OK, rant off.

Now I have to eat light and mentally prep for this.  I'm in a pretty good place now that the bureaucratic BS is done with.  But I'd be lying if I said I wasn't anxious about this whole process.  I am.  But it's what I gotta do and I'll be unconscious so no one will get hurt :) . Additionally, I trust Dr. Kenneth Chao and it's a relatively safe procedure.  The gel and markers should take about an hour (I can't imagine I even considered being conscious for that long during something like this!  lol.....NO! NO! Oh HELL NO!) to implant and I come out of anesthesia like a kid waking up on Christmas morning, so with a 1pm start time, I should be good to go by 3 at the latest I'm thinking.

Then I have to decide on 5 ICBMs with high yield warheads fired at my lil' friend over 2.5 weeks or 40 cruise missiles with smaller warheads fired 40 days over 2 months.  I still don't know the right answer and I need to make a decision soon.

Thanks for everyone's kind wishes and does anyone know how to measure/talk in terms of radiation taken into the body?

Updates - Implants - Radiation and such......

I met with the favorite radiation oncologist today and we set a tentative date for Thursday the 24th for implantation of the spacer device, assuming that works well with the roommate that has to take me to and from because they do not trust me to come out of anesthesia and take myself home. They underestimate me.

Regardless, if all goes as planned, I will have the space implant, implanted on Thursday the 24th and then within two weeks will start radiation. The implant guy thinks I should do 40 sessions of lower radiation, the non-implant guy who’s got 24 years experience but has only done 14 sessions of the higher dose thinks I should do just the five sessions.

And I simply don’t know yet what the right answer is. Each has their pros and cons. I mean after all you’re talking about putting atomic bomb size blast of radiation into a specific organ or two or three into your body.

I mean is there even a right answer?

I'll Find Out Tomorrow If We Implant The Mysterious SpaceOAR Gel Friday - I'm Ready

Had a long conversation with Dr. Chao who is the SpaceOAR implant specialist as well as an experienced radiation oncologist.  He patiently answered numerous questions I had such as why a certain hospital?  Answer: the procedure is similar to brachytherapy......yeah, look that up....and he has a team that is experienced in these procedures he has confidence in at this location; what was his take on the SABRE 5 high dose treatments vs the 40 low to intermediate dose treatments - pros and cons but he's leary due to just how close the one "finger" of the tumor is to the bladder and the high dose is a pretty damned high dose.  So there is all that to consider.  This being palliative and not curative, I want as little damage done to OARs (Organs At Risk) as possible which will allow me to recover as quickly as possible and get on with life.  I just have to ask more questions, look at more data and weigh the benefits vs. the rare but extreme potential downside.  They really have gotten quite good at just frying the stuff that needs frying. 

We're just waiting on the insurance company (United Health) that administers my Medicare as of 1/1/19 for the small sum of $69/mo to ok it all. I mean, it's not like it's important or anything.

But I have easily a week or two to decide the number of treatments, even though the clock starts ticking once the implant is made as it is absorbed by the body within six months.

In the mean time, I'm as ready as I'm ever gonna be to do this, so let's do it!

Intriguing 2nd Opinion From Radiation Oncologist Close To Home......."You Have a Very Unusual Case" "Yes Doctor, I've Heard That Once or Twice Before"

The day after Christmas, I met with Dr. Daniel Chin, a radiation oncologist with John Muir Cancer Center.  Dr. Chin has 24 years experience and did his residency at Stanford.  Knowledgeable, direct, busy and with few of the warm fuzzies I get from Dr. Chao, but knows his stuff.  That said, he was aware of the SpaceOAR gel implant and they did not do them because the last time he really looked at it, it was new, Medicare did not pay for it (i.e. nor did most insurance and it was $3k a pop (now about $2500)) and "data was still early as to if it made a difference."  I'm pretty well read at this point and there's good data to back up the practice with more and more clinical data coming in.  Besides it just makes sense that if they've gotten very precise with their machinery and can come close to delivering high dose radiation almost in a 3d manner to just the tumor/organ that they wish to destroy, then pushing the rectal wall away from the prostate by a couple centimeters (they literally are immediately next to one another) just makes intellectual sense. I just wish they could do the same thing for the bladder.

He did state that he was perfectly comfortable working with it in place and noted the added benefit that Dr. Chao, who has the experience placing the gel, could also place the gold (yes there will be gold in my pelvis so make sure someone sifts the ashes when the day comes!!!!) fiducial markers in the gland so that even as I move and my organs move throughout the day, when it comes time to get nuked, they can always adjust for movement. (Side note: Have you ever considered that our organs all shift throughout the day? I'd never really considered it.....but it makes sense )

He did a thorough (good Lord prolly THE most thorough palpation of that organ I've ever had when conscious) exam and stated that he could feel an extremely distinct tumor on the right with just a firmness on the left but not at all the irregularity of what he felt on the right. The issue started and has always been on the right, so this was no big news to me. It did, however, lead me to ask about the possibility of just "killing" the right side of the gland (in retrospect a silly question but you don't know if you don't ask) as opposed to the frying the whole damn thing.  It was a flat out no.  In his opinion and that of, I've come to realize, any responsible RadOnc or surgeon, if you tried to do that, you'd inevitably leave high grade disease and I already "most certainly have" mets from my little friend running around in my body.  All or nothing from the physician's perspective.....and I'm afraid he's right.

This radiation would be palliative in nature to keep the tumor from penetrating other organs.  It is not curative although it seems it might buy some time and with the latest technology, it seems with little likelihood of long lasting, severe side effects. A possibility but a markedly reduced likelihood from even 2 years ago and with the SpaceOAR implant, bad side effects are even further reduced. Nothing is risk free, but this is as close as it's gotten with radiation in that part of the anatomy and it's pretty good these days.

That was not the case when I was diagnosed 5 years ago. Radiation was a sure way to kill tumor and gland and one could be pretty sure there would be extremely unpleasant side effects that were likely long term.

Scheduled one more appointment with my favorite urologist (and I've had 3 and he's the only one I've ever liked, so when I say favorite, I mean it's ok if he pokes around in places because he's  empathetic, super nice, compassionate, straight forward and gentle) to discuss all this with him and get his take.

I had that appointment and he was the nice, professional, compassionate, straightforward guy that I last saw almost a year ago (things had been really good for a while until about Septemberish).  He agreed the radiation made good sense from a palliative perspective, wasn't convinced the SpaceOAR was needed (he makes a good case but I disagreed) and reminded me he had my back with other physicians when it came to anything regarding my pelvic organs.  Dr. Jeremy Lieb is an amazing doc and I am so lucky to be a 10 minute walk from his office. 

Now that the new year has begun and new (more expensive) insurance has kicked in, I can move forward with this.  I don't like the idea of radiation being introduced into my body, even in a targeted, computerized way;  it can cause a host of problems as time goes by and I like those prospects even less.

I also don't like the idea of giving up my prostate. When I was diagnosed, there was never even a discussion of surgery or radiation or anything to destroy/remove the gland due to it being Stage IV and in my lungs.  Kinda like once the cow is outta the barn, there's no point in shutting the door.  But now it's more of a try to slow or prevent the really ugly complications that can happen if the tumor keeps growing unchecked. This is not the typical progression of 98% of PCs but it's mine and always prompts the commentary from a new physician, "Mr. Miller, you certainly don't have a typical case"......or......"Scott, you have a very unusual case."  Yes, thank you.  I'm very aware at this point.  I can't ever just be like everybody else ya know..........

Therefore, insurance authorizations, hospital and physician all on the same page, I should have the spacer and the gold (remember, SIFT THE DAMNED ASHES!) fiducial markers implanted next Friday by Dr. Kenneth Chao, who has implanted the spacer 35 times before. Dr Chao went to UT San Antonio and did residency at an educational hospital in Michigan.  He knows and has specialized in this procedure and he has been extraordinarily patient, empathetic and human with me.

My energy is lacking.  Haven't been to the gym in way too long and trying to get myself back to walking me and/or the dogs.  My neuropathic pain has had an uptick and I am feeling what is becoming less a discomfort and more at times pain in the pelvic/perineal areas.  So my lil' friend (you have to say that with a Tony Montana accent of course) is growing and I either get my glow on or end up in an operating room in a few months trying to untangle stuff.

I've chosen to get my glow on.  If anyone want's to cook a roast, let me know and I'll strap it to myself for a small fee.

Gratitude For Excellent Medical Professionals.......Some of Whom Are Friends and Family :)

God bless good nurses and good physicians!

I had the luxury of talking to one of each yesterday. The RN is a long time friend and this person's ability to compassionately listen, kindly comfort and reassure me reminded me there are really, really good RNs out there.

I also talked to a relative who is a specialized MD. Same story. Listened, respectfully asked pertinent questions and reassuringly gave me good feedback......and comfort, part of which means being able to say, this ain't gonna be all peaches and ice cream.....at all. But you can do this and you need to.

Big heart today for medical professionals in my family and family of friends. HUGE!

Moving Forward With Gel Spacer Placement and Radiation

My last post concerned the need for palliative radiation to keep the tumor from invading either the rectum, the bladder or both and my extreme fear of of the process for placing a spacer through the perineum to push the rectum away from the prostate and eliminate/limit damage to that important organ from the radiation. More on that process here.

I spent much of last week researching the whole process (protective gel placement as well as the 40 targeted radiation treatments) and chatting with men around the country who had been down this road.  What I came to discover was that about 1/3 of the men I spoke with had had SOME form of sedation and several were completely sedated.  Indeed two men said it was just their radiation oncologist's protocol and that their physicians liked it because it's crucial that a man be perfectly still during placement and the best way to guarantee that is if he's out like a proverbial light.  Makes sense to me.

So, I emailed my RadOnc and much to my delight, he called me back and said we'd figure out how to get it done under anesthesia. His office, although filled with compassionate professionals, is not licensed nor does it have crash equipment for putting people under.  He went on to say that he didn't care if I did the radiation near my house or further away at his office.  His primary concern was me.  He went on to say that I was "in the top 10% of patients" who were well researched and asked the very important questions.  Damn right I am.

Next week I'll meet with the RadOnc closest to home and see if I want him and his team to do the radiation.   He has a good resume, the John Muir Cancer Center has excellent reviews and I COULD WALK if I needed to.....it's that close.

I'm not having pain in that area, only what I would call noticeable discomfort and a realization my pelvis is "fuller" than it was 4 months ago.  This is the tumor expanding against the other organs

Therefore, the plan is to research one other option but then likely move forward with the gel placement and then I'll go get my glow on.

I'm proud of myself for remembering that I AM THE PATIENT,  I AM THE CONSUMER and I CAN FIRE professionals that don't meet my needs.

That said, Merry Christmas, Happy Hanukkah, Happy Kwanzaa and just generally Happy Holidays to all. :)

A Decision I Have To Make

Hard choices.  My PSA has jumped in 3 months from 7.2 to 9.   Not good, The last MRI shows the tumor growing outside the prostate in the directions of both the bladder and the rectum, which means that shit just got very real.

My choices are to do nothing and let it happen, or take radiation "therapy" which will also include hormone deprivation "therapy."

The radiation "therapy" requires an injection of a gel through the perineum (google it if you aren't familiar with that anatomy) to protect the rectum, which is right next to the prostate as is the bladder.  BTW, whether you believe in God's creation or evolution, the male reproductive/urinary system is a poor design. Really poorly designed although many men think their genitals are God's gift to the world. But I'm terrified of the procedure.  I know women endure much worse during childbirth.....but I'm not a woman.  I'm just a terrified guy.

I don't like the idea of "radiating" ANYTHING.  I've watched too many videos of side effects from radiation.

So this week, I'll talk with my palliative care guy as well as a second opinion from a different oncologist as well as my PCP.

But I'm frightened.  Not of death, but the procedures to keep my quality of life reasonable.

And I'm frightened.

I'm Sorry I Don't Remember. No, I'm Really Sorry

I had an encounter with one of the people I've worked 4 or 5 catering jobs with in the last year.  I recognized a familiar face and we said hi and I said, "I apologize but I don't recall your name." The person said, in a bit of a huff, "Well dang Scott, I always remember your name and we've worked together so much."

So I had to explain.

There is this side effect of the chemo drug, docetaxel, (one of many) that is called chemo brain. Not something I ever wanted but I deal with it daily. I forget names, I forget chores, I forget what we talked about, I can't multitask like I used to. I struggle to even make a list of things I need to do.

It's no fun and I hate it.  But there's not much I can do about it.

So please, if you know someone who is having or has had chemo, cut 'em a little slack.  They're trying.  They really are.