Wednesday, January 16, 2019

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?

Monday, January 7, 2019

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!

Saturday, January 5, 2019

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.

Wednesday, January 2, 2019

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 all. But you can do this and you need to.
Big heart today for medical professionals in my family and family of friends. HUGE!

Sunday, December 23, 2018

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'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. :)

Sunday, December 9, 2018

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.

Sunday, November 25, 2018

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.