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!