Greetings!
This post has been comprehensively updated to correct, by complete replacement, my errors in terminology and to update the time line.
Treatment is far more than medical procedures. This post addresses EVERY ASPECT of my life that affected or was affected by the procedures - it includes things I simply did not think about or could not find out about in my early days of "discovery".
First - some qualifying statements... lawyers call it "due diligence," others CYA, others "disclaimers". I like to think of this as "Terms of Use" or "Fair Warning."
- My wife was an equal partner from day one. She brought her perspectives and a sharply focused and detail-oriented mind to help US overcome OUR cancer.
- I am willing to correspond with others. Now (June 28, 2017) four weeks post treatment life has returned to "normal."
- I do not have a command of the jargon, acronyms and code words.
- I bring a strong background in ignorance to this discussion. I need to learn. If you can learn from what I post, my sharing will be validated.
- Some will find my humor troubling, but I am not troubled by it and it is inseparable.
- Sharing this story is NOT FOR ME, it is FOR YOU.
If you are still with me, here goes...
It took me about 3 months to verbalize, "I have cancer." In emails, I used "cxr" - I did not want to even see "cancer" in reference to me in print.
I live in central PA near Harrisburg.
I invested my first day of retirement (3/13/17) lying on my back in an OR undergoing pretreatment get-ready work. (Details below.)
I spent part of my 70th birthday flat on my back on a proton beam treatment table at the University of Pennsylvania. (Details below.)
The Adventure Begins
September 2016: during an annual exam, the family doctor put his finger on it..."You've got nodules," he said! He was describing an abnormally bumpy prostate gland. I immediately turned it into a joke... "Are you talking about an Englishman...Nigel??"
October 2016: The local urologist who also put his finger on the problem & proved it w/a biopsy. Biopsy shows it's not Nigel, its Gleason...but not Jackie. Gleason 3+4... T2c... Prolaris (an advanced evaluation of the biopsy slides that indicates aggressiveness of my individual cancer) 4.6. He recommended IMRT, due to my various risk factors - Afib, stents, diabetes, etc. He wanted me to get a 2nd opinion. I too wanted a second opinion from a doctor that had absolutely no "preexisting connection" with the local urologist.
The local urology practice has in-house IMRT service in their very own rad lab. I was offered a referral there. I was also offered a referral to an in-house surgeon. I declined both.
I asked for a big city referral and was given the name of a surgeon at Temple U in Philadelphia. (125 miles one way). BECAUSE my local urologist makes surgical referrals to Temple and with no disrespect for a most capable Temple University Hospital, I picked U PENN for an IMRT 2nd opinion (115 miles).
Before making a PENN appointment, I read the bios for EVERY PENN urologist and rad. oncologist dealing with prostate cancer. I picked Dr. John Christoduleas for his involvement in research, teaching and patient care. He wrote a paper along with others on SpaceOAR - more on this later.
December 2016
I had my initial visit with Dr. John Christoduleas ("John" from here on) who also recommended IMRT. He too felt he had to experience my nodules first hand...or finger ...
In basic plain English terms that left no opportunity for miscommunication, John laid it all out regarding PROTON BEAM IMRT. My risk factors... i.e., MY probability of death from prostate cancer = 5% through 10/2026. I have a 95% chance of dying from something else at/by that point. Since that equals 100% and the limits of my math skills, I cannot do the probability math beyond 2026.
My Afib is managed with several daily drugs. The blood thinners - rat poison, a/k/a, Warfarin and Clopidogrel, a/k/a Plavix, tend to make the vessels brittle. Whether this is a natural byproduct or as a result of radiation treatment was not discussed. It does not matter how/why. It is a condition that must be monitored (how?) and addressed if necessary.
John also wanted me to talk to a cutlery wielding practitioner (surgeon) - I opted not to do this since both the hometown urologist and he had very good reasons for me to select IMRT over a slice & dice Benihana experience. [Benihana is a Japanese steak and sushi restaurant chain in the US, at which the chef prepares your meal in front of you, often with some very elaborate and entertaining knife work.]
January 2016
MRI reevaluation - no change from November CAT. Schedule = proceed/implement w/o URGENCY (except perhaps in the restroom).
During a second visit with John, a refined treatment plan and process were set. Part of this required creating what I perceive to be a 3-D virtual mapping of my prostate and placement of targeting reference points (gold orbs) to guide the IMRT, which I call the death-ray. I believe w/some uncertainty, that the orb PPS (prostate positioning system) was previously called Calypso. See note above regarding language, vocabulary, acronyms and (my) ignorance.
In our first visit, John mentioned SpaceOAR. It physically moves (shoves) the rectum away from the prostate before and throughout death ray treatments.
From day 1 it biodegrades and it is urinated away in about 6 months - this is incremental and brings no urgency to this task. John wants to keep the temporal interval between installation & treatment as short as possible. SpaceOAR - it is a contracted acronym for (get ready)... SPACE and Organ-At-Risk - is US FDA approved.
In the literature, SpaceOAR was described in a list of the top ten (10) breakthrough medical treatment technologies or processes of 2016. (See details below.)
Driving home from this appointment, my wife and I discussed things in detail. We concluded - OK... get SpaceOAR near home - Harrisburg or Hershey and do death ray there too.
I called the SpaceOAR manufacturer to find local sources. They reported that there are NO qualified doctors or hospitals between PENN (Philadelphia) and Pittsburgh (180 miles west) or from Richmond VA (200 miles south of us) north to Canada (too many miles to calculate) in the US 15/I-81 corridor.
I asked my local urologist about SpaceOAR. He had NEVER EVEN HEARD OF IT.
Worse news - the manufacturer also said PA Medicare would not pay for it. (I never knew PA had its own Medicare payment tables.) But the enlightened manufacturer will "HELP" me through a 4-step Medicare payment denial appeal. They helped me by hiring a lawyer to help the doctors w/ appeal steps 3 + 4. I'm on my own for steps 1 and 2. How generous. [JUNE 2017: It has been three and one half months after SpaceOAR installation. To date I have not received a "DENIED" payment notice from anyone for the SpaceOAR. Without receiving a DENIED bill from Medicare, there is nothing to appeal. The obstacles in my road to helping SpaceOAR through the governmental acceptance process are frustrating.]
Clearly local SpaceOAR ignorance (correct word usage) prevented me from implementing our short-lived and creative "do-it-close-to-home work around". Then I learned that U PENN is really committed to SpaceOAR. "How committed?", you might ask. To advance it through the U PENN training phase and subsequent development of internal protocols, policies and procedures processes, I learned that U PENN would pay for it - the product and its installation! This made the choice easy. [I have since learned that I was the 13th (and last) patient for which PENN covered the costs of "parts & labor".]
So here's the treatment plan... 39 weekdays of treatment at 70 centigray (new word to me).
What about other treatment accouterments? John has no plans for Lupron - hormone therapy - unless later testing shows a need. SpaceOAR should diminish negative impacts on nearby rectum...it will not be as nearby as it is w/o SpaceOAR. PPS will better target problem areas and avoid collateral damage.
With the treatment plan pretty well solidified, we looked at logistics and schedule.
The 230 mile daily trip is a major challenge/obstacle. When we were planning we realized that winter in PA means snow, ice, travel snarls and so on. All of these natural consequences of winter give David what's his name of nightly "Breaking News" the opportunity to report on weather that, in turn, lets him divert attention from higher priority real news...but I digress... Weather may be news, but it is really an obstacle that requires a work around.
Hotels are not the answer, but again, PENN had an answer.
Neal, a PENN social worker referred us to the AstraZeneca American Cancer Society Hope Lodge Philadelphia facility where he opened all the necessary doors for us. With weekday treatments, we could go home Friday and return Sunday or Monday and remain "checked-in" during our weekend absences. (See "Progress Reports" near the end of this post for details on this fabulous facility.)
We had already learned that when we drive to PENN their valet parking was available to us without cost. I was only mildly upset on our first visit when I drove up in a Simca and drove home in an Avalon! (Simca was a French import in the early 60s.)
After meeting with a nutritionist at PENN, we were prepared for grocery shopping and daily food selections that yielded meals compatible with the expectations of the "procedure crew" - a group I had yet to meet. They want a significantly clear rectal cavity to manipulate as part of the daily death ray procedure.
So all that was left was a start date. PENN had that assignment. Based on all of my experiences with them to this point, I was pleased that this task was in the good and capable hands of Timothy - a patient advocate and process expediter/coordinator.
WE NEED A PLAN
Before beginning there must be a time of planning, preparatory work and gathering the needed tools, materials, people with proper skills and so on. There are a lot of smaller plans that must come together into a comprehensive plan. All who have their hands in the process must have a full understanding of how the plans they craft will mesh and engage with other's plans.
Basic plan components include... treatment prep and get ready, Proton delivery, Philadelphia area housing, local and long distance travel, home security, USPS mail delivery management, list house on local police watch list and on and on.
While the folks at U PENN completed their planning, we worked on our plans - and reworked them and reworked them as different plan elements changed.
To remove confusion, let me state with full clarity, the author and YOUR TOUR GUIDE IS THE SUBJECT OF ALL OF THESE PLANS and an INTEGRAL PART OF EACH ONE. Regarding actual treatment planning and delivery, other than selecting the broad strategy from a menu of choices offered by the "pros", my wife and I had little to no say in treatment plan implementation!
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Feb. 2017 WE RECEIVED A SCHEDULE!!!
Every time we received a schedule we knew it was ephemeral...changes were inevitable. Whatever the current schedule, we only knew it was the effective schedule after a particular day's events actually happened.
3/13 - Fiducials & SpaceOAR Installation
3/20 - Simulation - the process to confirm fiducial placement using CAT & MRI to create a virtual map of the prostate, verified SpaceOAR proper positioning, etc. My sides and center line will be tattooed for future daily laser cross-hair target verification before death ray activation.
4/3 Set-up Usually several days before treatment, in consideration of my travel distances, this is set for treatment start date.
4/3 Treatment Begins - originally planned for 39 consecutive week days of death ray the number was increased to 42 treatments.
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March 13, 2017 UNDERWAY WAY!!!!! - FINALLY!!!
Fiducial and SpaceOAR installation...
March 13, on the eve of a major east coast snow storm a/k/a nor'easter or blizzard, "we" began treatment by doing "pretreatment." This was also my first official day of retirement. I invested it doing all sorts of firsts that I never wanted to do. This was definitely not how I expected my first day of retirement would play out!
THE PLAN DuJOUR... THEIR Plan
As the day began, I had no detailed understanding of what THEIR plan would mean for me. Their plan was simple - they would install 3 fiducials (a noun that is haphazardly used to refer to at least two different kinds of landmarks) inside me. Now that sounds easy...for some of the participants.
After the fiducials, they would install SpaceOAR.
As we got started, and only after much protest on my part about where an IV would be installed, an excessively aggressive nurse-manager decided my opinion did not matter. CONVENIENCE FOR HER STAFF TRUMPED MY PREFERENCE...the IV was stuck in the back of my hand before I was wheeled into OR #53. This is one of only two substandard caregiver interactions I encountered.
In this large and chilly room I was told to shift myself to the OR table/bed. At this point there were three of us ... the nurse that delivered me to the room another nurse... that is two women and me. When I was in position, they strapped me down. My left arm was already immobilized by the IV in my hand and my right arm's movement was now restricted by a self inflating, constraining and constricting BP cuff. They hung a sheet (visual barrier) across my chest so only they could see everything below my belly button, They left all of that territory fully exposed.
I describe their perspective as that of an individual who comes in close and direct contact with a Monocular Minion w/o goggles.
I was new to OR etiquette and from this point on, I may have said inappropriate things.
Several days before these procedures, I asked for a modest SpaceOAR sample so I could both SEE it and show it to folks with inquiring minds. "Nope - can't do that," was the reply. I did get to see it, still in its package material. The urologist I met briefly when I was in the prep area showed me the package that held the pre-measured, unmixed powder and activating liquid at the ready. Then she and the SpaceOAR disappeared behind the curtain.
Through a now unseen door well beyond Curtain #1, a large crowd - later numbered at 7 - assembled. I knew in advance that among the group was a factory rep who was there to observe and, if necessary, guide those doing the actual SpaceOAR placement.
About OR etiquette . . . I was definitely not extending my hand to welcome each individual. Should I have apologized for the welcome they received from my Monocular Minion? No!
"We need to move your legs," announced a disembodied voice as my legs were moved. Somebody was trying to make my knees touch my shoulders while moving my knees far farther apart than they had ever been before. When we were happy with my position, they strapped my feet to wheelchair-like foot rests.
Another voice announced, "We're (why a plural pronoun contraction?) going to apply some tape." Somebody raised my scrotum & contents toward the ceiling and taped it all firmly in place. This required just two participants - me and the tape operator, so I guess we did do it.
A voice said, "We're going to clean and disinfect the area." He - it was only one voice - did not mention the cold fluids that "we" would use - alcohol (?) and betadine. To make things colder, "we" let it all air dry.
Another voice - "We are going to insert an ultrasound probe." Hmmmm, I wondered where that would go??? At this point, all I could do was lay there and take it all in, as a different participant list made up this "we." "THEY"...the plural of "we" ---but it had to be "him" as there is not a lot of elbow room down there...did not mention the mechanical expander that would he was deploying [inserting] before the probe.
Another voice - "We're going to use a local anesthetic."
I've been introduced to Lidocaine before. Before it works, it HURTS going in. It has a relatively limited area of influence, and inside of me that area resembles a sphere. The effect is local and only within that sphere. Local means, well, local. Each time the needle goes in beyond that sphere of influence it passes into territory that is very aware of its presence.
The next task was only for me!!! "Try to relax," said some voice, later determined to belong to the urologist I met earlier. The "relax" message was repeated several times as the intrusion was farther and further facilitated by the expander.
The admonition ... "relax - it will be easier for you" became a mantra. If the "relax" chant made the cantor feel better - great. It had no such effect on me, and it did not produce their desired relaxation result.
It was time to install the fiducials. I guess we did this too, but I was too busy clenching my leg muscles while doing my best to break off the foot rests. At one point, nurse Linda told me my legs were violently shaking. Since she had a firm grasp of the obvious, I readily agreed but found the tension and shaking an acceptable diversion to the internal pain. For me, in that environment, I was relaxing!
Linda seemed to be out of her element as she repeatedly told me "I am not accustomed to dealing with conscious patients."
The fiducials are landmarks and reference points. Two of the fiducials were installed in the upper side of my prostate. This position, as near as I can tell, relates to the part of the prostate that is normally closest to the ceiling when I am vertical. The other was in the lower side.
"Why three, you might ask?" Even this liberal arts generalist knows that it takes THREE to 'triangulate". Either THREE insertion needles were used or one was inserted, used, withdrawn and reinserted two more times. No matter the number of individual needles used, I could feel all this movement with its accompanying discomfort. You may refer to the previous discussion of local anesthesia acting locally. "OHHH WOW", I contributed several times.
WE - they - were doing their thing, while I, doing what I could to ameliorate the discomfort they created - pressed on.
To keep the folks behind the curtain fully informed, I offered an ongoing commentary. At one point, I mentioned that a local does no good when the work area is not in the same locality as the local anesthesia. Through this all, nothing I said seemed to be of any interest to the faceless and mostly silent minions beyond the drape.
There was one exception. At this point, my rad oncologist, John Christoduleas, who was in the OR but did not get his hands dirty, popped out from behind the curtain to tell me, in a somewhat co-conspiratorial manner, "Keep your sense of humor." Just as quickly, he was gone.
Fear not, doctor; I may not have any modesty or humility left, but I will always have a rapier-sharp tongue to deliver sarcasm-fortified humor.
None-too-soon it was time for the SpaceOAR installation.
SpaceOAR is prepared (mixed) on the spot using a two barrel syringe that resembles those used to spot-mix specialty glues and body fillers - the kind of thing you may find at PEP BOYS. (Pep Boys is a Philadelphia based chain of automotive parts and service stores). The two materials are introduced to each other (nothing formal mind you) as they are injected. Since the target location is several inches (?) below/from the surface of the perineum, i.e., inside my body, the needle has plenty of opportunity to make itself known.
Like the fiducial placement needles, this one too was guided by the same ultrasound wand for which there is definitely NO magic involved. Based solely on what I was feeling, the material was not injected at a single place and allowed to self-distribute. That would be too patient-convenient. That meant that the pointy end had to be repositioned several times to get it where the factory rep/sales person (believed NOT to be an MD) had taught them.
Aside from the anal intrusions described earlier, there was a definite sensation of being "full" as in, "I REALLY need to urinate" full. Not painful, yet not pleasant; this too would pass. Being strapped down at the waist and with feet bound into stirrups, holding it in was the only polite option. There may be times when polite etiquette may not be achievable. Lying on one's back and with a slightly head-down angle, urinating "up hill" into a container, that must have its open end on the down hill side, may not preserve etiquette anyway.
After some time a voice told me "we're all done." Well, not quite. The fiducial and SpaceOAR teams may have left the building, but the equipment recovery team still had a bit more to do. Recovery was slightly less discomforting than installation, and there was a sense of relief as I felt the expander contracting and being slipped out.
Shortly after this, a faceless set of hands gently untaped the scrotum, then washed things up and rinsed them off with cold water. It seemed air drying in a cold ER was the preferred final step before being set free from the strap down harness.
About this time, while I was still captive, John reappeared. He gave me one of several "Universal Doctor Lies." He said, "You did much better than the others who had this procedure." This is intentional deception through misdirection. It did not work.
Before he left, he asked if I knew what would happen next week at "simulation".
During the planning stage and when today's events were put on the schedule, PENN provided a number of handouts that discussed each aspect of the process I would encounter. These info sheets used proceedure-related words to describe the process. The various processes were named but no details on the HOW DO THEY TO THAT were provided. [To be fair to PENN, three months later when I re-read the info sheet I discovered this: "A thin hollow needle will be used to place the fiducials into...the prostate".] Maybe I was naive.
We chatted briefly; I inquired about additional anal invasions. He responded, "It will be far less uncomfortable than today." That is indeed good news. Added to the handout-supplied information, I still do not know WHAT will be done or HOW it will be done to me
Still a few more minutes later and Dr. Wein, head of UP's Urology Dept., emerged from the curtain. He gave me some take-along instructions and also mentioned Simulation. This was the first time I laid eyes on this man. If our roles and positions were reversed, I'd have introduced myself to him face to face before I introduced any instruments into his monocular minion, i.e., his anal aperture and nearby territory. I clearly do not understand ER etiquette.
Eventually my legs were released, the hold down harness removed, and I was told to get onto my moving chair for the trip to recovery.
IT WAS OVER!!! but only for today...
The immediate post procedure situations... I had or felt ...
- Ready to urinate...w/o urine to contribute to the graduated cylinder.
- Lots of anal excretions of intestinal gases.
- Internal abdominal bloating - not painful, but not my normal.
- Testicular tension - not painful, but not my normal.
As soon as I reached the official room in which recovery would begin, I started to recover! I was free to dress and walk around. The nurses coveted a urine sample and would not let me leave until I produced one. As it turned out, I had to drink 48 oz. of water before I could muster up enough urine to prove that at least that part of me had recovered.
They also coveted a BM. They did not get one.
I drove the entire way home - about 2.5 hours and oh so high on adrenalin. We just barely beat the blizzard! The next day I was out with the snowblower dealing w/ about 20" of snow.
WAS IT WORTH IT?
Two days out, my wife asked me, "Knowing what you do now, would you still do it?" After clarifying that "it" referred to the SpaceOAR, I replied: "YES!"
The fiducials are an inescapable part of a radiation attack. For the technicians to focus on the problem areas, they need navigational aids. To minimize collateral damage, the SpaceOAR seems like the best (only?) option going. By the time I'd endured the fiducials, the rest of the work was bearable.
This minor incremental discomfort was a good decision for me.
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Note: Typically, Simulation and Set-up are, respectively, done two weeks and three or more days before the first treatment date. Because home is over two hours from U PENN, these intervals were compressed ... April 3 was the day things would FINALLY get started! Simulation would be immediately before first treatment.
SIMULATION - another day of firsts...I could hardly wait!!!
This is the final target verification. The previously placed fiducials should be properly aligned when the tattoos on my exterior are in the respective cross hairs of the laser targeting system for the Proton beam.
Upon arrival I was told to wait in the clothed waiting area. What other kind is there, I wondered? I was also told to drink a bottle of water. Alma, a Proton Two tech, came to collect me for "orientation to treatment self-prep" and introduction to "gowned waiting". She explained the routine. It was not yet MY routine...but it would be tomorrow!
Alma told me to continue drinking water. The goal is to fill my bladder. John later described their goal: "We want you to feel comfortably full." No matter how much or little I drink, I am comfortably full until I gotta go.
I was shown to a changing room and told to put on a pair of stylish gowns. The open gash on each is on an opposite side of me... one gash in back, i.e., traditional manner. To hide the gash in the first gown, the gash on the second was to be in front. This is to protect passers by from being embarrassed. I did not know it yet, but by the end of this day, there was no way I could be further embarrassed. My modesty would forever be shredded.
Now FULL of water, it was my turn (goodie). Alma returned and led me to the Proton Two Fixed Beam treatment room and introduced me to two other techs. Once there I was told, "Take off your shoes and one gown and get up on the treatment table", this is hospital code for flat, cold hard surface. This treatment room was also cold and drafty.
I was told there are 5 techs on my treatment team - Alma, Danny, Justin, Ro and Sam. Only two were guys. For their safety, they generally work in pairs.
As soon as I was comfortable (HA) a super slick balloon catheter was inserted into my anal aperture by one of them. Being cross-trained in every aspect of treatment, over eight weeks, each had a hand at this task. Next the balloon was filled with prechilled water. NOBODY could explain why the fluid must be cold. Later on, with about 2 weeks (10 days) of treatments to go, Justin told me that for a $50,000 donation to the hospital, he was "pretty sure" a water warmer could be installed, but it probably would not be installed before my treatment ended. [I guess my sense of humor was rubbing off on him?]
Correct positioning was verified by x-rays. EVERY DAY, at least four x-rays were taken to assure alignment. Having validated proper targeting using my recently applied tattoos, the fiducials and laser cross hairs on my exposed-to-the world skin and installing and filling the catheter, they decided I was both fully set-up and simulated. These were all part of the targeting process.
I was told that some patients apparently are concerned about "so many x-rays harming them." These folks have no clue how much radiation they receive during treatment! (See radiation discussion below.)
End of SIMULATION
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TREATMENT - a recurring, consistent routine
Drinking a lot of water, undressing, gowning and so on were repeated as the initial stages of every treatment appointment. HINT: drink water fresh from the-spigot, i.e., neutral temperature tap water - it goes down easier & faster than ice cold water.
I was reintroduced to the cold flat, hard surface. A new balloon was inserted & filled.
The prostate is nominally a center line organ both vertical and horizontal. For my prostate cancer treatment, the proton beam source is first on my side. The beam and prostate's vertical center line are aligned on the same horizontal plane.
No less than two abdominal X-rays confirmed proper "beam to me" alignment. First, my left side was "treated" by a Proton particle beam. After that dose was delivered, the cold hard table was rotated with me on board. Now the right side was adjacent to the beam source. Again, no less than two abdominal X-rays confirmed proper right side alignment. Again, the beam was switched on.
I estimated the dose duration was less than one minute per side.
This routine never changed. After three days it became boring. Both routine and boring were good. There was nothing new they planned to do to me (as far as I knew...).
Daily discharge - so to speak
The now-warmed to body temperature water was released from the anal balloon. I was told to "take a deep breath and blow it out slowly" while the balloon was extracted. WHY??? Was there some unknown to me direct connection between my lungs and the balloon's location? Near the end of treatment, I was told the inhale/blow routine was to "distract you during removal." I was never distracted during removal or insertion!
Ro told me that no one has ever declined balloon removal. This was a perfect example of Fake News.
After this, I was released to release the accumulated urine in my bladder. Careful attention must be paid to diligently cleaning-up the anal area. The lube spreads and can work its way deep into butt cracks and also into the right and left creases between scrotum & legs. I did not want it on my normal clothes.
That was it!
Almost right away, the schedule was changed. Three additional treatment days were added...new total was 42 treatments. These three treatments would be added to the end and extend treatment into a ninth week. One day a treatment was canceled due to equipment failure. To avoid a three-day treatment week, I asked John if we could double up on three days. "OK, but it will be one double-day per week for your last three weeks, and the treatments must be at least six hours apart."
I signed up for these long days.
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From the beginning, I have not hidden my cancer from my friends (that includes my family). Unknown to many, I converted these friends into my support team. No, I never asked them if that was OK.
For my friends (support team) and well wishers I provided a weekly update. They were and continue to be my cheerleaders. The first two updates are worthy of inclusion...
Week ONE Update
THANK YOU for your kind words, good wishes, prayers and support. I am blessed to have you in my support network. The first week my eyes, and so much more, were opened WIDE! Many have asked for updates...this one is rated G... for Oh my GOSH...
Lodging
My wife and I are staying at Hope Lodge (run by the American Cancer Society and funded by AstraZeneca); it is about 15 miles and .5 to 1.5 hours from the hospital (U PENN) depending on traffic.
This is basically an extended-stay hotel, where EVERYTHING is provided. Each guest is assigned a two double-bedded room and fully accessible bathroom. There is a laundry room on each floor and each has a pair of washers and dryers. All laundry chemistry is provided; there are no coin slots on the machines. Guests are expected to keep their room clean, their towels and sheets washed and the room spic and span when they depart.
There are four fully equipped kitchens we can use to prepare our own food. We have frozen, cold and ambient temperature food storage areas. Generally we prepare and eat breakfast at HL and pack a lite snack (eng. muffin w/PB&J) for sustenance before returning to HL for lunch.
Dinners are prepared & served by local churches and other groups and brought in Mon. through Thurs. The best dinners were scratch-cooked in the HL kitchens. There are usually lots of good leftovers...always too many cookies, etc. These dinners are a blessing and a curse. No cooking or KP, YIPPIE!!
Sometimes the meals do not satisfy guests' diverse range of dietary needs and constraints. Every food item was always really good; sometimes, it was hard to stay on the nutritionist's plan. After 8 weeks, I was, shockingly, within 2 pounds of my arrival weight.
Without Hope Lodge, we were looking at a 230 mile/day commute (home to hospital and return) which, for us, would have been a deal breaker.
Local Transportation for Treatment
There is daily HL provided shuttle transport to and from every cancer-treating facility in Philadelphia. There are three "to treatment" runs and two return trips. Commuter rail service is nearby and there is also "on-call" shuttle service to and/or from the station before 7 PM.
TWO shuttle rides (to and from treatment) make us slaves to the shuttle's schedules, which in turn means "early" hospital arrival times that create some of the following experiences.
long waits in "dressed" waiting room
long waits in "gowned" waiting room
drink up to 24 oz. of water - & hold it
bombardment by protons - tiny parts of Hydrogen atoms stream into me for about 1 minute /day /side. They zip along at about 180,000+ miles/second. These are delivered first from left side, then the right - I ride a horizontal rotisserie...I guess it is a rotationerie
long waits for the return shuttle
The entire ordeal is as much as 6 hours from Hope Lodge departure to return.
PENN has 4 "gantry" Proton beam treatment units and one fixed beam device. With the fixed beam device they treat as many as 30 guys each day with the same cancer I have. Overall, they move over 300 people through their respective treatments every day!
I am so glad that we found these places - PENN with its cutting edge Proton beam technology (largest installation of its kind in US) and the SpaceOAR organ isolation/separation process that is so new I am only the 13th patient receiving it at PENN, and so much more.
New Friends
At Hope Lodge we met a lot of nice people who are far worse off than I am. People clinging to the promise of medical trials - and their hope that finally they will find a cure for their issue. Several are repeat guests at. We have seen the treatment caused disfigurements from cancers in all body parts/areas. Waiting for daily treatments in the hospital, it was hard - very hard - to see little kids - 8 and younger going into the juvenile/pediatric clinic, or sedated and going into a treatment area.
Thank you for your support...it keeps me moving!
We have finished 12.5% of the treatments.
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Week TWO Update
This report is rated R.
By the third treatment, I knew there was nothing new that "they" could do to me. Every treatment is Routine - hence the R.
Three days into this and all dignity and humility have been fully shredded. Nothing is left to do to me to destroy or diminish anything except the cancer. That too is now routine.
In the midst of boredom, I have "paced off" the hallways in the Roberts Proton area at PENN and regularly walk at least 1.5 miles per day, mostly in dual, i.e., front and back, gowns, every day before treatment (see shuttle slavery in the earlier update).
There is only one thing to look forward to and that is specific music requests for the techs to play on/through their Pandora music service while they send those protons zipping into me! Starting last Thurs. I have introduced the techs to Joplin (rag time), J P Sousa (Washington Post March), Vivaldi (La Follia), and Rossini (William Tell Overture). Rimsky-Korsakov (Flight of the Bumble Bee) is up for tomorrow.
I am hopeful that I will not have much more to say for about 6 weeks - that would be a prayer request that I will solicit from you! In short... pray that I have nothing new to share!
I celebrated my 70th birthday with my tech crew. I just laid there while they delivered another successful encounter with me!
Thank you for your continued support.
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June 28, 2017
It is now four weeks post treatment. I must wait until August 28 (3 months after the last bombardment) for a PSA that will provide a definitive measure of success.
At home I had about 10 days of tiredness...I needed a mid-afternoon nap. That is over and I am back to about 6 hours of sleep each night. Life has returned to pretreatment normal.
Unless I (foolishly) drink a lot after dinner, I will not get out of bed for a slumber interrupting pit stop.
My wife tells me that most days I am pepier throughout the day and evening than I was pretreatment.
Speaking in the code of the prostate cancer patient...there is no latency, urgency or lack of control regardless of the aperture through which the discharge is taking place. All discharge systems (wink-wink nod-nod) are working just as before.
There is ONE lingering after effect which John says I'll have forever (and that's a long, long time - we hope). On the side of each hip there is a 3" diameter "tan spot." This marks the area in which those electrons pummeled my skin on their way to my prostate.
THANK YOU ALL!
There are a lot of people who made my journey easier, more endurable, and more effective. At Hope Lodge - Byron (go Huskies), Alex, Patrice and countless other guests. At PENN... John, Timothy, Neal. There, the folks I had greatest contact with...and I do mean contact - I call them my Proton 2 Beam Dream Team are Alma, Danny, Justin, Ro and Sam, who stuck with me through it all.
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SpaceOAR RESOURCES
SpaceOAR is made by Augmenix, a company in Bedford, MA.
Through it all, I understood the need for and supported PENN's preparatory work. This included the bean counters and the billing department. The people I would never see face to face assured me that all of the planned actions would be paid for by Medicare. They had their priorities - getting paid was at the top of this sub-group's list! This is not bad.
The SpaceOAR manufacturer had a different take on that one. I found out when I called them! SpaceOAR assured me that the charge for their biogel and its installation would be DENIED by Medicare and I could appeal that decision. This task has not yet emerged for resolution and, other than a PSA, it remains the biggest outstanding administrative issue.
Web Resources
www.spaceoar.com. Look at the Clinical Results page.
https://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-13-27
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PROTON RADIATION RESOURCES
Proton therapy is a highly targeted form of radiation therapy that delivers precise doses of radiation to a tumor while minimizing exposure to surrounding normal tissues.
Proton therapy is external beam radiotherapy in which protons (sub atomic particles) are directed at a tumor. The radiation dose that is given through protons is very precise, and limits the exposure of normal tissues. This allows the radiation dose delivered to the tumor to be increased beyond conventional radiation. The result is a better chance for curing cancer with fewer harmful side effects.
Proton therapy, like all forms of radiation therapy, works by aiming the energized particles, in this case protons, directly onto the tumor. These particles damage the DNA of cells, ultimately causing their death. Unlike X-rays, protons can be manipulated to release most of their energy only when they reach their targeted tumor. With more energy reaching the cancerous cells, more damage is delivered with each burst of radiation.
When constructed in 2009, the Robert's Proton Therapy Center was the only such facility between Boston and Florida and is the first facility with precise imaging integrated onto the proton equipment, allowing physicians to know precise tumor location at the exact moment of treatment
PENN has established a foothold in Lancaster PA and announced plans to construct a Proton treatment facility there. Just like the cancer it treats, PENN and Protons are spreading - the latter is a positive move!
Web Resources ...
https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/neurosurgery/cranial-base-surgery/treatments-and-procedures/proton-therapy
http://www.upenn.edu/almanac/volumes/v56/n14/roberts.html
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RADIATION RISKS
I am a generalist not a scientist. Here is my take on the radiation aspects of Proton Treatment.
The Nuclear Regulatory Commission-set LIFETIME maximum workplace full body exposure for an employee at a nuclear power plant or a sailor in a nuclear sub is 50 rem. The total radiation dose I will receive is 7,200 rems delivered to a ping-pong ball sized gland.
This is far, far more than the delivered radiation dose from x-ray positioning images. The x-ray dose is inconsequential compared to the treatment dose. More importantly, without position verification, there cannot be treatment. Life is full of choices.
Since protons are physical particals derived from splitting hydogen atoms, each proton can be weighed - well at least theoretically they can be. So I asked technician Rom "how many protons are in a pound?" She said she did not see the need to clutter her mind with that sort of information. I still wanted to know!
A scientist friend directed me to Avogadro's number. That led to a formula and that led to a calculation. Along the way I also was introduced to moles as a unit of measure and revisited my limited knowledge of scientific notation and grams. From this I calculated that there are 2.623 x 1026 protons in a pound. Said differently that is 262,300,000,000,000,000,000,000,000 protons. I looked for a name for this number and discovered that there are too many zeroes. Until the federal deficit gets close to that number, there will not be a name for it!
YANA's Value
I found this site (YANA) by accident and even more serendipitously, I landed on a post from Glen who, it turns out, lives about 40 miles from me. If you're still reading, I must acknowledge his role in all this. He encouraged me to add my experiences to YANA. It seems he and I have traveled many of the same roads albeit sequentially. Like any tourist, he has noticed how things have changed since he traveled this road. I am most appreciative of his diligence sharing his experiences.
His initial and subsequent posts made it clear that I have found the right facility, technology and physicians. I have found a valuable resource in YANA and willingly contribute this post because sharing this story is NOT FOR ME, it is FOR YOU.
Thank you!
Gil
September 2017
Greetings!
Reminder... treatment was proton beam radiation using SpaceOAR to physically move the rectum out of the line of fire.
The immediate post-treatment plan was to wait 90 days and do a PSA. The target value was <1. The actual result was .7. This is one time it is good to be an under achiever.
In a meeting after the test results were known, Dr. John Christoduleas used a series of questions to understand "current conditions" with various waste management systems (bladder and rectum) and prostate performance. All plumbing systems are working fine; the hydraulic system is about 50^ effective. I sleep the night through w/o the need for pitstops - this news seemed to surprise him (too bad).
There has been no change since I returned home from the final treatment in late May.
The plan going forward is to submit precious bodily fluids every six months for a PSA. He did not define a new or different target number. In response to a question he replied, "The probability of return of prostate cancer is 5%.
I also asked if there is anything to be discovered by a DRE in the future. He responded, NO. Hooray!
Please note this minor correction to information in the initial post... The work place limit is an ANNUAL LIMIT, not a lifetime limit...
"The Nuclear Regulatory Commission set THE ANNUAL maximum workplace full body exposure for an employee at a nuclear power plant or a sailor in a nuclear sub at 50 rem. The total radiation dose I will receive is 7,200 rems delivered to a ping-pong ball sized gland.
Remember, I post this for others who are on this same trail. Sharing this story is NOT FOR ME, it is FOR YOU.
Thank you and be well!
Gil
At 9 months post treament, the PSA TARGET was <1. The ACTUAL is 0.4.
All quality of life considerations are unchanged from pre-diagnosis. No bladder or rectal issues, no firm erection, no blood in any discharge.
PSAs are set on a 6 month cycle for 4 years; in office visits on 12 month interval unless unexpected events create a sooner need.
PROTON BEAM w/SpaceOAR seems to have behaved as expected.
"I had 42 treatments at the University of Pennsylvania Hospital and all I have to show for it is a T-shirt and a tan spot on each hip!"
It is 21 months since my last treatment. Height, weight and other basic metrics are unchanged from pre-diagnosis levels.
A pre-C colon polyp was removed about 5 years ago. That precipitated a late 2018 colonoscopy. At the end of radiation treatment, I was counseled to contact my Rad Oncologist John Christaduleas before scheduling this procedure. I did and some prep and planning events were altered.
I am told that the colonoscopy went well...I slept through it. There were no polyps discovered.
The after action report indicated that there was/were "altered vascular mucosa in the rectum." Apparently, this is a common side effect from radiation bombardment. The mitigating effect of the SpaceOAR (see main story) has not been measured.
The mucosa were cauterized...burned by electrical current...to create scar tissue that will prevent bleeding. Post proton beam treatment, anal aperture bleeding had not been a significant issue, however, at times when the "leading edge" of the ejecta material (poop) was particularly hard, there were a few blight blood spots on the toilet paper. Uncontrolled bleeding was never an issue. HOWEVER....because I am on RAT POISIN a/k/a Coumadin...a blood thinner for cardiac issues, I keep close tabs on any bleeding. I watched and waited for my next U PENN visit.
In late March 2019, I had an annual visit with the Rad Oncol folks at U PENN. I learned two significant things during that visit....
BLOOD/BLEEDING...I shared the color photos of my colon. There is some level of concern regarding vessels in the rectum. Cauterization should be minimized.
Rather than treat my altered vascular mucosa, it is better to modify my diet to prevent the "hardened leading edge". Consuming soluble fiber and getting it into the poop is the last good thing the fiber does for me. The high concentration of soluble fiber in my poop absorbs more water than fiber-deprived poop. More water = a softer leading poop edge and that delivers, i.e., prevents, abrasion induced bleeding! I had a bowl of oat meal this morning!
PSA TREND...I was CONCERNED with the upward movement of my PSA...from .4 to .7. I learned that a PSA score can bounce up and down without regard for the presence of prostate cancer. In addition to obvious documented PSA score trends, U PENN uses an equation to measure the "Threshold of Concern" or ToC.
For me, the ToC is crossed when a PSA of 2.4 is reached. Until then, swings are of no concern. I also suspect that, at my age (71.92876), watchful waiting will be the initial strategy...but I am not the practitioner...just the customer. If we get to 2.4 I will update this page.
21 months after treatment I continue to age into the more common issues of arthritis, eye sight and....I can't remember what the other issue is that I wanted to share....oh well...
Stay tuned.
From the isolation of my personal Corona Virus bubble there is not much to report. I rescheduled an annual visit with U PENN due to "beer virus" and will probably re-rescedule that visit.
Last PSA was 0.7 - that was about 6 months ago.
There is no need to merge my isolation bubble with will the unisolated envrionment of a localblood lettiing facility, I will bout off that experienc until I am certain I can get to a U PeNN appointment. I will post an updated PSA when I have a new PSA to share.
SADLY...I must report that ALL HOPE LODGES have been closed till ??? This is NOT good news for those who need HL to enable treatment.
RECAP
First round treatment…
Tactile discovery by family doc Aug 2016
Original PSA 3.6 (Aug 2016) Polaris 4.6 (Nov 2016).
43 fractions for 73Gy Proton Beam ended on 6/20/17. Done at Univ. of Pennsylvania Perlemen Cancer Ctr. (Philadelphia)
Post treatment nadir .4 (Mar 2018)
LIFETIME high 4.1 (Oct. 2021)
Biopsy triggered by PSA confirmed REOCCURRENCE (Oct 2021) NOT METASTASIZED.
Gleason 4 + 3 (from round 1 biopsy)
Dx adenocarcinoma
Treatment: 2 HR brachy treatments (Jan 2020) @ Fox Chase Cancer Center (Philadelphia).
DISCUSSION….
Reoccurrence requires a SALVAGE procedure. Hey, lets get a 10,000 Gauss magnet and go scrap collecting (salvaging) at the bridge over US 202! NOPE…not that kind of salvage…
A salvage procedure uses EXACTLY THE SAME technology as first round treatment… Stay tuned for more….
It appears that after a total of 111 grays delivered in April-May 2017 (73 G) and an additional 38 G delivered in Jan 2022 that the bladder - and possibly the rectum have been affected/damaged. This is stll emerging and also under evaluation. It does not help that I gained natural covid immunity in April 2022, however, the interaction of the two "Big C" maladies is unknown.
First attack was 44 Proton Beam assaults over 40 days at Univ of Pennsylvania (Phila) guided by Dr. John Christadouleas. Second Round twice deployed iridium 192 in brachy treatments.
PSA summary
ROUND 1
Pre treatment 3.7 March 2017 Three days before starting Proton Beam
Post treatment low .4 March 2018 Post Proton beam low
Post treatment high 4.01 October 2021
ROUND 2
Post treatment .23 November 2022
After two rounds of radiation bombardment, first my bladder and more recently, my rectum/anal aperature with their individual and highly specialized control systems have begun to release their grasp on their respective contents. Managing these two system failures is not a well traveled career path.
In Sept 2023, I opted for a AXIONICS sacral nerve stimulator. It is designed and targeted to better manage the bladder. There is some significant carry over as it appears to be affecting the anal aperature as well. Apparently, the sacral nerve "services" both systems. Acclimation to this technology is easy and management is equally so.
My estimate of about 130 Greys of TOTAL radiation has taken its toll. The first and imho, most destructive, in spite of SPACEOR deployment, was the Proton Beam assault at Univ of Pennsylvania Perleman cancer center. On forty treatment days they delivered 44 treatments. The second assault was two treatments using Iridium 192 through a brachy delivery device in January 2021 at Fox Chase Cancer Center (part of Temple University).
I have attached a PSA TREND LINE a/k/a graph. It does not go back to first onset (2016)
