THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Hello there Brothers of the Realm....
In Oct 06, my GP sent me to a urologist for an alarming rise in my PSA. I finally got into see another urologist in early Dec who palpated a "hard ridge" on the left that the GP had not felt. Given my dad and his twin's history of PCa, I opted for a biopsy scheduled for 14Dec. On 13Dec I finally got into see the 1st recommended urologist who was a surgeon who specialized now in brachytherapy and HIFU. She drew additional blood tests (that the other DaVinci enthusiast surgeon had not even alluded to) such that we could better "stage" my situation.
The following day I had my 13 sample biopsy and I was struck with the non-gentle demeanor of the first guy. Having read a bit of Sturm/Pogliano's book (A Primer on Prostate Cancer. The Empowered Patients Guide. The ISBN number is 0-9658777-6-0 and it has been available at Amazon and Barnes & Noble as well as at the Life Extension Foundation site, whose support saw the book published.), I requested a specific lab for the path slides to go to which seemed to take this doc "aback". There were further pregnant pauses in the good doctor's discussion when I brought up "second opinion" path labs and additional scans to determine staging and micrometastisis.
A call on Sunday morning Christmas Eve was a courageous one for the good doctor as he revealed my Gleason and staging results from the biopsy. I honestly thanked him for his candor and information.
I went to work on more reading, research and thought into my own situation.
This rough surgeon additionally ordered contrast CT and bone scan. I happened to be reading the page on CT just after I swallowed the barium for the actual test--the book I was reading mentioned that there were a number of more valuable tests that far outweighed the accuracy of the CT. Bummer. A snowstorm rubbed out my bone scan date and I then reported to the original urologist my GP had recommended.
I had a wonderful conversation and I was amazed at the time she took to weigh various treatment avenues given my high Gleason. She ordered MRI, more tumor marker type blood tests, and above all, partnered with me on my considerations. I returned with my family for a nearly two hour meeting with her a few nights later.
I immediately transitioned my grazing habits into saw palmetto, pomegranate juice, vitamins, whole grains, soy/tofu, and away from my carnivorous ways. As a firefighter I have occupational exposures to carcinogens and I've also increased my use of PPE as far as gloves, breathing apparatus, and keeping my bunker gear clean. I'm far more maniacal about hooking up the diesel exhaust system in the firehouse bays as well.
We leave 10 Jan 07 for The Dominican Republic for an adventure with www.USHIFU.com Dr Suarez and my own doc. I love travel and adventure--perhaps I should have been more specific with what I asked for! I'll keep you posted on my progress. (I was too high a Gleason to qualify for the US clinical trials for HIFU now in Phase III.)
The trip down to the Island from Colorado with my wife was a wonderful time together. We kept reframing to remind ourselves that we love travel and adventure—this experience filled THAT bill. While my Gleason was high (8) and raised cautions for local treatment, the additional scans and tumor marker blood draws ordered by my second urologist all appeared negative for micrometastasis (appeared—big word). We were met by the USHIFU team and the clinical coordinator addressed concerns, answered questions, and made introductions of staff—plus my new Brothers in Battle and their special partners.
For me, nothing by mouth overnight. Wife Tracy and I awoke well rested; however, in the moments after (her) breakfast had our no holds barred values clarification, I love yous, and the "clearing" for 'be here now' jag. (Come to think of it, we had one of these events just before we got married 15 years ago). I was second on the schedule and the coordinator called our hotel room to cue me up for the driver who would take us to the hospital. I administered 2 Fleets enemas 2 hours prior to the procedure while still in the comfort of the motel.
The driver came about 10 am and then we filled out a few forms at the hospital. We had a short wait in the waiting room of a private hospital waiting room among the cacophony of Latin life—it was soothing to be around the strong and very diverse families here.
I was called into recovery for IV, official hospital gown and support hose. The US trained but local Republica Dominica anesthesiologist then placed a spinal and sent me reeling into la-la land with a secondary IV versed. My own doctor and the staff of USHIFU.com conducted the ?3 hour procedure. I awoke a couple times and just listened in to the happenings then the doc handling my sedation kindly administered some more versed and I slept for another long time. The whole idea is NOT TO MOVE during the computer planned/cued technology as the ultrasound went about it's grid-administered heat to all parts of the prostate.
I awoke in the surgical suite to find I had a (planned) supra-pubic catheter. I was released to go back to the motel when feeling came back to my legs such that I could bear weight and walk.
I currently type from the motel room to take a break from my wife's well deserved snoring—this is the best she has slept in the weeks since October's high PSA worries. I feel very normal except for my little friend tied to my leg. I will have the urinary catheter for as long as it takes to heal up and void normally. 3-4 weeks are the average, I'm told.
I'll keep you all informed on my experiences and I wish you all well on your own road to high adventure with PCa. We leave the island Monday.
Good Luck—and great research to you.
Jan 15 Flight home from Dominican Republic to Boulder. I wear the leg bag attached to the catheter and by "stroke-of-luck" I'm wearing the hiking pants with zip off legs and shorts conversion. The zipper above the knee allows me to easily empty the leg-bag strapped to my thigh in the airplane bathroom! I notice that while I'm seated the cath doesn't drain well as my pants leg compresses the bag—no problem though. As soon as I stand up the bag fills, I feel comfortable, and by the time I walk to the bathroom at the back of the plane, I'm ready to dump the full bag. Isn't it great I reserved AN AISLE SEAT. I relax and consume juice, coffee, and water at will. I take every advantage to go to the airport bathrooms as I've been drinking water like a fish. I use a stall, so impatient travelers won't be stacked up behind me for the plumbing freak show at the urinal. Cancer has been inspirational. I listen to Dr. Barken's radio show www.PCREF.org by iPod/iTunes so I'm on the Mediterranean Diet.
Jan 16 I've been showering and changing out the dressing once and often twice a day. I pull the dressings off the supra-pubic cath site and shower normally. I wash the insertion site with soap and water then rinse with hydrogen peroxide. I insure that the site is dry, bone dry, prior to taping a couple of folded over 4x4 compresses on each side. I have had no leakage at the insertion site. I only had a drop of blood or two owing to "pulling on the sutures" when I inadvertently "hooked" the tubing—OWWWWWwwwww. I have changed to paper tape as the cloth tape was causing a bit of irritation to the skin. At night I hook up to the big collection bag hanging from a coat hanger wire placed between the mattress and foundation of the bed. I find that I get spasms about midnight—I think that I'm obstructed—Oh no. It actually turns out that I'm empty--if I modulate the valve on the cath I have a more normal ebb and flow of the bladder and no more spasms. I am no longer using a collection bag during the day and just walk in to a restroom and open the valve on the cath when I need to void. It is almost "normal" except for the slow flow through the tiny tubing—how many more minutes…..??
Jan 17, 18 I'm going out doing chores, drinking lots of water, and for a moment I'm panicked about "where are the bathrooms in all the shopping centers?". I laugh as I notice an empty water bottle rolling around the floorboards of the PU Truck. It occurs to me I could just take the 12" tap off the cath, drop it in the empty bottle on the seat and no one would ever know. This keeps getting easier.
Biker buddy calls and asks if I'm using a donut cushion—his other friends with various prostate procedures have had a hard time sitting. "Nope, I say. I'm ready for the Harley as soon as the ice melts and the streets are clear."
Jan 19 I go to my son's wrestling meet for a whole day in another city. Again, I keep hydrated and using the bathrooms "on the road" is not a problem. Back home that evening, my son notes the diet change and says, "So that's ONE good thing about cancer, Dad".
Jan 22 Clinical visit to Dr. Emilia Ripoll, Urology, Boulder CO. Blood in urine (normal). This is the first day that I'm able to pee a bit normally. No incontinence, ever. With some irritation, it's paradoxical to attempt to relax to pee and also experience the discomfort. I "Zen'd" my way through it. It is less uncomfortable after initiation of the stream and clearing a second or so of blood/darker urine. I'm off the antibiotic after 10 days, so I'm drinking a glass of cranberry juice daily to reduce the chance of bladder/urinary infection. Dr. Ripoll warns to avoid beef/chicken full of hormones when combating an androgen fueled malignancy. I'm on the fish and tofu these days—I may go to the numerous health food stores in Boulder for natural meats if my 14 year old complains too much about the Med Chef dad. Sugar and dairy—gone!
Jan 23 First day back at work with "light duty". Limitations by doctor are no lifting over 20# and wear loose clothing (precluding fire uniform and belt) Fire department is fine with accommodating my needs. Driving and other projects are no problem. It's great to be back at work. Everyone wants to know how to avoid prostate cancer; what's a "normal" PSA (I give them Dr. Strum and Donna Pogliano's excellent handout); how was the Dominican and where are OUR cigars and RUM??
Jan 24 Weak stream from my own urethra. I'm alternating "tries" between the supra-pubic cath and urinating normally. It seems if I have a time or two to recover using the cath valve, the stream from the urethra is better. I get about ¾ emptying. Other times, I notice that likely I have irritated myself (passing blood, etc) to where the prostate/urethra are swollen again. I'm glad I still have the cath in.
Today Feb 4, I am 23 days post treatment with normalizing ability to pass urine as swelling in the prostate subsides. I still have an initial flow of blood and tissue which is anticipated for some time following the destruction of prostate tissue by ultrasound. My current comfort/discomfort is down to "when you've waited too long to go to the restroom and your bladder/plumbing is screaming for relief". While I don't have the urgency that description denotes, I do have the after-effect of the strain on the rifle barrel. Not pain per se, but not entirely normal either. I still have the supra-pubic catheter which runs through the abdominal wall directly into the bladder as a safety measure until I empty at least 80% normally.
Today I'm nearly normal. I'm scheduled to get the catheter out tomorrow afternoon. I do have slight irritation to the skin where I've taped and re-taped the tubing from the catheter to my hip. I switched to paper tape fairly early on; however, the hard plastic components of the tubing/valve and outlet all have found themselves jammed into my little Skandi-American skin during the rigors of work, life, and an affectionate wife.
I cannot really determine if I have "frequency" from anything other than drinking the ocean of fluid patients of HIFU are advised to consume—9-10 glasses of water minimum. I'm fairly certain I remember peeing more than hourly once in 1984 when I forced hydration prior to running a marathon. I even had to duck into a privy during the race to unload! That's about my story over the past three weeks as I've tipped glasses, mugs, bottles, thermos' of--green tea, cranberry juice, pomegranate juice, tomato juice, a reduced amount of coffee, and much water. I've become as attached to my favorite water glass as I have been to my favorite coffee mug.
Feb 5: Cath out today! When I arrived at my urologist's office following a half day of work today, the nurse had me pee into a gadget that measures flow over time. The little graph paper is like an EKG coupled with a river flow gauge. When the falling waters break the starting line, the little line jumps up the graph paper to match stream strength over time. I watched my half normal arc matched by rise and fall on the graph paper, then the "second coming" as I've come to know it with additional emptying and a second smaller rise to match. Prior to PCa and HIFU I cannot remember a time prior to about 5 years of age that found me so interested in the simple art of peeing.
I was the end of-the-day patient at the clinic. We had a talk about my general health, then proceeded to the exam room where the internal balloon anchored catheter would be removed. The physician first removed the two sutures where the tube entered my belly, then with a syringe at an external port, aspirated the sterile water which had filled the balloon since Jan 12. Next I felt like I was on half the receiving end of a rubber band that had broken as she quickly removed the tubing from it's small puncture through my abdominal wall. It was as if I had been snapped inside the bladder by a small rubber band with an electric millisecond ZING conducted down the length of my urethra. Done—that quick. A small wad of 4x4 gauze pads was taped over the wound and I was advised that there may be some slight leaking over the next day or so. I was to keep the area clean, use peroxide, a touch of multi-sporin cream, then redress the 4x4's (4 inches). It would heal from the inside, out.
I now have four days of Levaquin antibiotic to take, I'm off the anti-spasmotic for the bladder, and I'm continuing with Flowmax and Mobic. I start Cialis tomorrow on an every other day regimen to retrain the crane operator.
Now it's the waiting game to see what is up, or down, with the PSA measurement at 90 days out.
My diet is nearly nil for dairy at this point. Salmon and fish have become my friends. I am drinking red juice from plants I remember from Sunday school stories. I haven't had any chicken, pork, or beef since Christmas at the fire station (we cooked a ham). I've cooked more broccoli, onions, garlic, and tofu (toad food?) in a week than I have in several years. I've eaten all the grains from those mystery bins at the health food stores—quinoa, amaranth, brown basmati rice, and a host of others. And, I feel good. I'm not a Starbuck's addict anymore. I have apples and dried fruits or fresh berries for sweets. And I've lost a quick 5 pounds.
That's it in a nutshell.
Feb 14 Belle Bonfills Blood bank tells me I cannot donate blood unless I'm cancer free for five years-Bummer.
Feb 17 I'm back in the Littleton firehouse full-time 24 hour shifts and couldn't be happier. 27 years here and I still love going to work. I work with the best guys and gals you could imagine. They have covered shifts for me, stayed in touch with my family, offered financial support from our union-the Canadian and US "International Association of Fire Fighters". I cannot say enough about my Local 2086, about the Firefighter Cancer Support Network, or my Wind & Fire MC firefighter rider pals. Joe Cocker's "Get by with a Little Help From My Friends" rings in my ears.
Feb 20 I see the Uro for swollen testicles. Having the biggest balls on the block is over-rated. She gives me an antibiotic.
Feb 22 Could they get any bigger? How do I walk? I'm sent down for a "Testicle Ultrasound". Try being the kid from school with that pinned to your shirt. I go to the imaging center and the bouncy young blond turns out NOT to be the volunteer who takes you to the rad tech-she IS the rad tech. My fate is in her hands-she assures me the ultrasound gell is warmed. After a search of the twin moons, an off-site radiologist reads the images and passes the message through my uro that I have "hydrocele" bilateral. I knew something was bilateral. I see a massage therapist who specializes in a very light lymphatic drainage type of work over my low belly (no, not THERE) and chest. I immediately feel better and within a day the translucent fluid-filled peaches are back to the oblong "shooter marbles" they started out as. Walking is no longer an ordeal.
Feb 25 I slept ALL night, perhaps the first time in a month without three to five stops for my urinary frequency issues. Was it that Scotch I had at 7 pm? It was but a wee dram.
March 1 Urgency, frequency, burning. I see the uro and she does a urethral dilation. This is successive passing of an #18, #20 and #22 Foley catheters. As a teen I could only dream of two women handling my little brothers-now, just now, I'm thinking there are other things that would please me more. A 10cc syringe of xylocaine gell is inserted, then a wire clamp to hold the medication in. This is followed by the passing of the successively larger rubber tubes. Is this too much adventure? I leave the office with my Rx for Proced Q 4 hrs-this med will turn my urine BLUE and provide for topical pain relief from the inside out. It sort of does. Sort of...
March 6 Still urgency and frequency-I'm now put back on Flomax-the Alpha Blocker that the occupational doc says may DQ me from firefighting. It's my little secret-I had no issues of concern last time I was on the stuff.
March 21 Same symptoms. How can I work with a visit to the urinal every 30-45 minutes? My uro has a look via cystoscopy-a camera that travels the same route the Foleys do, only it is a semi flexible catheter. Uro reports that there is prostate tissue in the bladder and some along the urethra. She hopes that some of the debris will shed and the caliber will enlarge. I'm thinking about the Dr. Douglas Chinn lecture on HIFU where he has chosen to do pre-procedure ADT and pre-emptive TURPs to avoid issues of strictures following his HIFU. I ask if I might have a stricture-"maybe". I stop the Flomax as it makes my episodes of urgency/frequency less predictable and doesn't appear to have benefit. Surprisingly, amidst all this discomfort and upset, success is reported at home that evening-I'm not even sure the Cialis had time to hit the bloodstream. Too strange, but I am not complaining-I'm grateful for our gift.
April 13 I have my PSA, Testosterone and free Testosterone drawn but my new Lab Card policy means that the tests are sent out to Kansas from here in Boulder and I won't know what my results are for days.
April 23 I see my uro and the PSA result is 4.0. Hmmmm. My hope was something in the order of "0" . The PAP is normal and she focuses on that-perhaps the prostate is still healing allowing for the higher PSA. My inner voice is saying "Hey, you're a high Gleason and the best you could hope for was de-bulking of the tumor-when are you going to initiate intermittent ADT3 for an 8 month regime?" I don't want to listen to my inner voice, but I call Frieda at Dr. Barken's in San Diego and schedule a coaching call for May-I need more information.
April 27 I have another cystoscopy with a different Uro. She sees urethral stricture and advises a laser procedure. She also sees lots of junk in the bladder that needs to be evacuated. She mentions that she is seeing a lot of HIFU men with the same stricture issues. I'll schedule this on Monday for our earliest convenience.
April 28 I'm back at work on a 24 hour shift and I'm peeing molten lava. I'm forcing fluids and using Pyridium, a med that makes me pee yellow/orange but it does not seen to have the local analgesia of the blue stuff-or am I infected? No fever or reddening of the opening. I text message my main Uro in between 911 calls and she phones in an Rx for Levoquin 10 days. We are out all night on calls and I'm peeing razors and fire every 45 minutes. And-I actually feel lucky that this is happening in an organized way either at the firehouse or one of the receiving hospitals-the GRIP hasn't caught me out on a call. By morning the peeing, while painful, is settling down-"dull razors".
I REALLY appreciate my patients and I am one very kind paramedic after this values class on "what patients may be going through". I believe I was always a good medic but I have gone the extra distance with those patients I might have tended to minimize in the past. I don't KNOW what they are going through and I don't have to. My job is to get them to the hospital alive and as pain free as possible. Cancer has gifts. I'm getting many lessons now.
As I contemplate a lengthy involvement with PCa (as the Gleason 8 suggested from the get-go) I remember the quote from one of the time management books about "if you knew you only had six months to live, what would you be doing" Question two-"How is that different from what you are doing now?" Question 3 "Why".
I would tell my wife and my kid more often that I love them. I would tell them how much of what they do is appreciated. I would love them for who they are, and who they are not. I would be unreasonable and start telling my other friends that I love them. The ones I already do tell, I'll tell more often.
If I wanted to be a more loving and supportive dad and husband as I claim, then cancer is one very fine Guru. I'll need to accept other people's help. I don't know it all. And, nothing is wrong here. The adventure continues-more later.
Good luck to you and yours as you read this and other sources of PCa info. I'm on a number of listservs for prostate cancer and I dearly appreciate the Brothers and their women who so generously share their experiences. There is no one-way and no prostate cancer situation is the same. I can only imagine how frustrated our committed health providers and uros are with this elusive disease. I celebrate their commitment and I honor them for persisting in the face of "no sure-fire cure" or silver bullet solution.
Get your buddies age 40 and older to do annual PSA's-get them followed up with a GOOD urologist if the PSA is 2.0 or higher. Men with family history of prostate cancer (mom or dad's side) need to start at age 35 and consider 6 month PSA's. No one need be caught "late" like me. If you have a family history get that book by Strum and Pogliano cited at the top.
Eat your colors, have your vitamin D, exercise, and "just trust". It's going to be OK anyway it comes down. Relax. Life? LIVE IT.
Wed May 2:
I call Nurse Sara to schedule for a Laser TURP. This will open up my plumbing and hopefully allow for some return to normalcy in the bathroom department.
Thurs May 3:
I see Dr. Sabharwal for information on the TURP which can either take place in her office or under general anesthesia at the hospital. I tell her that I want her to do her best work-where can that occur? We schedule for the hospital for the 18th.
Thurs May 10:
Tracy and I have a "coaching call" with Dr. Barken out of San Diego. "Maximum surveillance, Minimum intervention" "At First Do No Harm" Dr. Barken is attentive to the aggressive Gleason 8 in a younger man. He is also concerned about fall-out from various treatments in a younger patient. He points out several imaging and blood tests that might better "re-stage" or find out where the cancer is at. He mentions MRI-S and Color Doppler Ultrasound as well as tumor markers. We discuss ProstaScint CT Fusion as an economical second option to the more useful imaging done in the Netherlands. He is upbeat and reminds us that attitude is everything. Quality of life is important. He jokes that he must write a book soon that speaks to the joy of the many hours of life each of us with prostate cancer have to enjoy in between doctor's visits-don't forget, you have a LIFE! "Trust God, but tie your camel!". He is concerned about my BMI or the fact that I'm overweight for my age/height. Eat healthy and exercise are his immediate prescriptive changes. Barken says that patients with aggressive cancers like mine need to steer away from novel or experimental therapies.
Wed May 16:
I see E. David Crawford at the Univ of Colorado Med Ctr for second opinion. He is concerned with the damage he sees on the video images of the cystography and shows me the sheer tissue sloughing off the urethral walls like seaweed along an undersea lava tube - I'm shocked. He views the two strictures above the sphincter near the bladder neck. It reminds him of early days of cryo surgery where damage to urethra tissue occurred prior to the heated catheter technique to protect the passage. He recommends self-catheterization as needed to pee. "See where natural healing takes you" prior to moving into a TURP. I'm more shocked. How can I do that? Cath MYSELF? He reminds me that a traditional surgical TURP allows for biopsy material to be recovered and provide information useful to staging.
Dan Parker, uro tech and ex-Denver General Hospital paramedic is positive and supportive. He shows me what needs to be done and allows me to "do the deed" on self-catheterization with some expert oversight. I just need to pee - all my other considerations and embarrassments have faded in light of my discomfort and immediate needs. My ego takes a hike.
I go home concerned about my 24 hour fire shift the next day. I call in sick. How can I work as a firefighter. I'm embarrassed that someone will "find out" will tell me that I cannot be a firefighter. I note that my ego is back.
Thurs May 17
I go to a medical conference for a half day at Children's Hospital. I have my little zip-lock baggie with my #18 quick cath, my KY surgical lubrication, my gloves. I have urgency/frequency while driving; however, when I "let loose" nothing happens, not a drop. I have a burning pressure within and it subsides-nothing happens. I make it to Starbucks for my first "combat cath". I slip into the bathroom, pull out my equipment, do the deed, and then wash the equipment to prep it for the next event. I'm fine-it's over.
I go to Children's and after drinking an OCEAN of fluid, not to mention Starbuck's I have to duck out of the lecture. I go to the large restroom up on the top floor of Children's and step into a stall. I do the deed, people come in and go out. My ego is intact. I am managing!
I cancel the LASER TURP scheduled for Friday. I am very afraid of any additional damage.
Fri May 18
Screw it. I'm the one who is saying I cannot be a firefighter. I'm in MY way. I go to work. I cath 8 times in a 24 hour shift running calls, doing housework, doing PT at the park and weight room. I for all purposes have a normal life - albeit part secret.
Fri May 25
I return to CU Med Ctr for bone scan.
Tues May 29
The bone scan returns with highly suspicious for metastasis on my spine, my forehead, my sternum. By definition, I think this is Stage 4 of the four stages of cancer. I research the stats and note mention of median survival of three years. I read an account of a guy with mets who was given 18 months to live... 13 years ago.
Wed June 13
I get a ProstaScint CT Fusion scan at CU Med Center for lymph node imaging for metastasis.
Tues June 26
I see Dr. Ripoll to strategize on my care now that I have bone "mets". She says it's highly unlikely given my tumor markers and clear ProstaScint. With the Gleason 8, she has always advocated for adjuvant ADT therapy.
Francis calls from Dr. Crawfords and asks if I can get in immediately for additional "plain films" of all the areas identified as possible bone mets. I spend the afternoon as a stage prop for a new radiological technician-she's great and I'm remembering how many folks made room for me as a new paramedic back in 1980.
Wed June 27
Tracy and I go in for Dr. Crawford's advice on management of my self-assumed Stage 4 these past four weeks. Nurse Francis pre-emptively enters the room and shows me the "plain films" show no mets! Crawford enters suddenly and offers that in light of the current imaging he recommends another biopsy in September and re-staging with a possibility for more local treatment. "What do you want to do" he asks.
"Well, I guess I'll check back in with my other folks regarding the new information" I say.
"Very good" and he abruptly leaves the room.
"What was THAT!" wife Tracy says shocked.
"He's pure scientist" I re-assure her. She's accustomed to the lovey-dovey Barcelona born Dr. Ripoll.
We leave for a couple's visit to friends Warren and Marcia's in the cultural mountain retreat of Aspen. It's a WONDERFUL two days of love and relaxation. An oasis of happiness amidst my cancer adventure. I'm still cath-ing but I could give a care. I've now cath-ed every day an average of 8 times a day through thick and thin-"doing life".
Wed July 4
We leave for the inlaws/outlaws in August GA. My ear bugs me during the flight. That night I take Sudefed decongestant in the motel room.
Thur July 5
I cannot pass the catheter early in the morning. It will not go in and it doubles back when it meets obstruction. I'm screwed. Out of town. Holiday. At a motel. I call everyone back in Colorado and leave messages. Local ER or no ER. I'm resigned. Just then Dan calls back from CU. "Did you travel?" "Did you by any chance take an antihistamine?" "Do you have Flomax?". Dan figures out that that Sudefed shut me down. "Stop traumatizing with the catheter and wait out the half-life of the Sudefed to wear off". A couple hours later I pee a little-just enough to take the pressure off. Later that day I can pass an 18 cath. The rest of the trip I pee and then do residual catheterization to insure the bladder is empty.
As a paramedic who sees many bladder infection patients with in-dwelling Foley catheters, it is hard to wrap my head around the fact that this in/out of the quick cath appears not to give me an infection. The big goals are to:
1. empty the bladder completely so that a pool of remaining urine is not left behind to become infected and to
2. keep the quick cath as clean as possible. I'm maniacal on cleaning my hands and the equipment. I use gloves every time to prevent contamination. I do not want a bladder infection added to my other challenges.
Wed July 18
I see Dr. Sabharwal and sign up again for the laser TURP, we make a plan to do it in the office as an out-patient as I've done so well with the self-catheterization. I am added to the schedule for Friday. She's surprised that I've persisted this long with the self-catheterization. I get up four to five times every night for the cath-more for 911 calls at work.
Friday July 20, 2007
I went in to the doctor's office about 9 for my 9:30 Laser TURP procedure. The laser would burn away and open up the urethral passage in the way that knives would have in a conventional procedure - I would lose the benefit of biopsy material for the gain of less bleeding. I took the prescribed Vicodin and Atavan at 8:30 a.m. Tracy drove me in and camped out for what had been scheduled as "the morning". I was called into the small treatment room and prepped sunny side up, turtle style. Draped and official, the only part of me exposed was the part that normally is the object of draping. The table was full of electronica supporting the "blue laser" . There would be two techs with the $ million+ portable machine. Nurse Sarah and my uro's partner, Dr. Sabharwal would complete the crowded ensemble.
Sarah filled the channel for the telescopic camera probe with xylocaine gel and clamped off the escape route. After a short while Dr. Sabharwal made an attempt with the non-flexible metal equipment-it was "no go" at the strictures located above the prostatic sphincter. She continued to try to gain access while I watched what I could on the color television camera. The discomfort of the large tunneling equipment reaching Swedish hard-rock had me drop out of the grandstands and just endure. The equipment just wasn't going to go.
I had trouble over the past week with full stoppage of flow-I was "dilated" a week ago from Thursday. Dilation involves passing a stylette or "flexible coat hangar wire" followed by successively larger catheters over it. We only made it to size 18. During all my prostate cancer adventure to date, THAT had been my most painful experience… up until this morning. I knew from self-cathing over the past couple days that "slow and gentle" allowed for the size 18 flexible rubber cath to pass resistant strictures (scar tissue) and gain admission to the bladder. Now the floor, the draping, the table, the doctor were a bloody mess and the two male techs both had shocked expressions on their faces.
My valiant doc mustered on and we quickly scheduled the hospital for urgent general anesthesia and relocation of the blue light laser to Boulder Community Hospital Foothills campus. I rested for a couple hours under the narcotic realm of a second Vicodan. I had lucid dreaming-quite pleasant and I could enjoy the mind wandering entertainment choosing whether or not to wake. I don't see why this is an abused drug, but perhaps I wasn't at the desirable level. About 1pm my wife drove me over to the hospital and I plunged forward with the paperwork, blood draws for lab, and permissions. About 2:30 I was again prepped with the best in backless fashions and Tom the anesthesiologist was discussing the options I would be looking at. I vaguely remember being rolled into the operating room and boink-I was OUT.
I came to consciousness in recovery with the staff looking for my wayward wife to move me out of the hospital. Now complete with an in-dwelling 22 Foley, I was loaded up in a wheelchair and hooked to a drainage bag. Tracy received the doctor's instructions: take it easy, drink tons of fluid, and remove the Foley when I was peeing clear two to three days in the future. I went home to crawl in bed. I implemented my old coat hanger between mattress and box-springs trick to hook my little friend, the drainage bag. My table of peroxide, 4x4s (gauze), and the traveling leg bag were set near the bathroom. Here I could summon my uro workshop skills from the supra-pubic catheter days of January's HIFU.
Saturday July 21, 2007
I'm at home "day after" and producing cranberry colored urine. I had to quit the Vicodin early this morning owing to the narcotic side-effect of paralyzing my GI tract. I recovered that necessary function with a Fleets and switched to Acetamenophin-the only OTC pain reliever that doesn't promote bleeding.
Today has been OK. I thought I was stopped up a couple times but the firefighter trick of stomping on the hose (gently blocking the Foley tubing distal while squeezing the surgical tubing) freed up the blockage at the Foley tip deep within the bladder. Given the damage to the urethra there is some frank blood coming from around the tubing at the meatus-hydrogen peroxide and Neosporin ointment at the insertion seem to ease the feeling of the tube "rusting in" to the tender little entry point.
As always the specter of all this unsavory urologic experience has tamed the bravado of my 15-year-old son. He's quietly taking care of his household clean-up chores--conflict from this dedicated teenager is strangely missing today. "Dad, I'm going to eat all the RIGHT food now to make sure I don't get prostate cancer", Hunter asserts. Within a hour of his declaration he is finishing a bag of potato chips, proof perfect of a stressed guy within his age-group (or mine).
Friday July 27:
I applied to Dr. Kurhanewicz UCSF MRI-S program to see if I can get imaged and find out what the issue is with my prostate and strictures. Do I have increasing PCa tumor volume closing down around my traumatized urethra or "HIFU Effect" tissue damage with poor healing capabilities the issue?
I am out of sick leave. I cannot function as a firefighter/paramedic in the field. I am very grateful to a fire administration who is finding administrative work for me to do either at a desk or telecommuting from home since riding in a car appears to enflame the stricture tissue. Without this I would be without a paycheck and amidst growing uncovered expenses related to medical care.
July 27 Letter to Terry Herbert YANA
Terry and all:
"The Gift of Time" and isn't it great we're around to grumble about it. I can relate to your day of consternation with late and quirky doctor's offices. As a fire medic we pride ourselves on "same day service" if not delivery of services within 4-8 minutes of the 911 call.
Our doctors have the foible of being human, both a limitation and a blessing all in one. I find that many specialists of any stripe: artists, musicians, mathematicians, firefighters, while great in their chosen area, may lack the organizational and business skills needed to navigate a small business or practice. The other contributing factor to patient grumbling is that medical offices may hire folks who do not possess the total package that patients adore: personality, cheerleading, efficiency, flexibility, accounting acumen, and the all important-liaison with our various insurance schemes.
I have two doctors on "my team" who couldn't be more different. One is a jovial, heartfelt collaborator who truly hears me and checks in on my well-being. She is a warrior in an uncertain world of prostate cancer and keeps on keeping on in the face of what must look like many failures. She has the gift for supporting "quality of life issues" and to a degree is criticized by patients who want a "just tell me what to do" approach. She has tremendous affinity for human experience and at some point may look into an increasing role among Hospice.
Another doc is a well published star of the PCa research world and much more "pure scientist". I braced my wife for the contrast, but she was still stunned. This professor administrates a galaxy around the shadowy star of prostate cancer. His center takes on the regions' lost and losing patients referred from a multi-state area. As his uro-tech explained to me, the good doctor is double booked, running a corral of residents, and in making a decision possibly not to see a patient he may lose another number to prostate cancer who could be saved or helped. He runs a tight ship that can run aground at any time with emergency surgery, overview of a resident doing an urgent procedure, or life. His staff is amazing and human. They also run a tight ship against the background of very ill family members, teenagers, and the urgency/confusion of newly diagnosed patients stumbling into the large center's waiting room. This doc is laser blunt in his efficient use of time and a 180 experience from my other doc.
One doc took over an hour on two different occasions with my wife and me to carefully consider, educate, and plan contingencies or future study. That was at the expense of patients "scheduled" in the waiting room. The other doc took 5-10 minutes to "surgically" articulate that the Stage 4 bone mets diagnoses from which I had operated for nearly a month was now nil owing to plain film follow-up to a negative Prostascint the day before. I told my wife as we walked out of the towering facility that I didn't know whether to cheer or throw-up.
All of that I toss in the hat for consideration about "what are our expectations", "what can we learn from our life WITH cancer that was unavailable to us before", "where are the gifts", and "what can I learn about myself regarding others' behavior that is irritating the dickens out of me".
As I've mentioned in another post, I gave lip service for a year about wishing to grow into the courageous and loving man I know is locked away somewhere under my cynical emergency services, curmudgeon of a dad, façade. I could not have asked for a better guru/teacher than prostate cancer, urethral strictures, and the stress tested every day love that my family is now called upon to live WITH. What a context! Who asked for THIS life?
"When the student is ready, the Master appears" (Buddhism). I'm going to operate like **I** asked for this life, this one, the one with cancer.
I cannot say that I'm always enlightened… but I'm learning.
Enjoy that wait in the doctor's office. "Chiripada" or 'lucky accident' (New Mexico) may be available to those who notice. Enjoy the "Gift of Time" and be prepared to "Be Here Now". And Now. And Now.
Thanks for all you do for the world for us in the prostate cancer game, Terry. You were one of the first who was here for me on my Christmas Eve Day diagnosis of Gleason 8 as a 54 year old. You're in my book of personal Saints whether you sought that or not.
Be well, Brother.
Thursday August 2:
Cannot pass #18 straight cath without hitting what feels like a rubber gasket of a prostate. The catheter starts to fold back upon itself. If I advance slowly it creeps through a millimeter at a time, but I can feel the whole works being tugged when I pull back on the cath. Why am I narrowing? Why is it structuring down so quickly after the laser TURP?
Friday August 3:
Went into my Uro to ask for straight caths #14 and #16 to try and get through weekend. Nurse Sara surprised me with physician order for #16 Foley for weekend with re-eval after that.
Monday Aug 6
I go into the Uro and she is prepared to change out the Foley in-dwelling cath equipment. She cuts the one-way valve off the second lumen or port to insure that the inflated anchor balloon deep inside my bladder is in **NO WAY** still inflated. We ease the #16 Foley out. It actually comes out easily with only a couple drops of blood.
She hands me the #18 and knowing that I'm an old pro at this from my '70s hospital experience just recently updated this month of June with my quick-cath saga. We both laugh. It's true that I will be as gentle as can be with THIS patient. We lube the tube and I don some gloves. The larger Foley goes in with no difficulty. The doctor advances the Foley damn near as far as it will go-"this is to insure we don't inflate the balloon in the prostate" she says. I'm all for minimizing trauma.
That's it. I'm out of there. She has provided a #20 for Wed and a, dare I say PIPELINE size 22 for Friday. She is intending to very slowly dilate the urethra while giving it additional time to heal.
Monday night I email Dr. Chinn in CA with a couple questions-I have found him to be one of the most knowledgeable docs in the US on HIFU. He kindly obliges with a return email and advises that I have a difficult course. He recommends trying increasingly larger in-dwelling Foleys. Bingo-some concurrence is always helpful. He reminds me to stay on track regarding my cancer progression. I admit to myself that this urethral stricture thing has been very distracting.
Tues Aug 7
I pass the #20 Foley Tuesday night so perhaps it will settle in by Wednesday morning. I hope to go to work tomorrow on "light duty". I put 20cc sterile water into the balloon port via sterile syringe. The port is marked "30cc" indicating maximum filling of the balloon. The smaller Foleys were marked "10cc". I would guess that mis-reading these could lead to over-inflation, rupture, and possibly pieces of balloon malingering in the bladder awaiting infection. I vow to read carefully.
Wed Aug 8
My day goes well at work on light duty. Perhaps I shouldn't have walked downtown for lunch-I'm bleeding a bit. My doc had said I could give walking (exercise) a try and that I would likely have some bleeding.
That evening I go to www.LandmarkEducation.com and enjoy this great life education on moving beyond my constraints to live life well. I walk out with just how good my life is and well, "Life IS good." This program is worldwide and I wonder how many of the prostate cancer brothers take advantage of this.
Thurs Aug 9
I'm still bleeding a bit. I call work and telecommute from home on project work for the fire department. I want to be near my alternative plumbing if something breaks down. I pound fluids every day and today is no different. With the increasingly larger Foleys I notice the "little fellah" is suffering. The dry climate of the mountains and the dynamic positioning of the tubing within it's entry point leads to complaint from "down there". The doc advised either applying the triple antibiotic cream or a little of the surgical lubricant used to originally insert the catheter. I go one better and use a little of the xylocaine gel I have hoarded for just such an occasion. The topical anesthetic puts the sore member to sleep as I attempt to make life better-there is now less complaint.
While at an urban bus stop, my leg bag becomes full and I start "backing up" where I can feel it in my bladder. I now re-enact Steve McQueen's role in "The Great Escape" as the prisoners of war empty the diggings of their escape tunnel via hidden bags under their trousers in view of the guards. I drop to a knee on the lawn near the bus stop as if I'm re-tying a shoe. Deftly I snap the valve open under my cuff and dump the contents of the hidden bag. I am near of dozens of university students-no one pays any mind at all. The lawn is happy. There is no evidence of wrong doing here. Cancer is so much about "getting over myself".
I am so paranoid about the PIPELINE #22 Foley I am to insert on Friday that I choose to put it in Thursday night. I have looked all week at what looks like a LARGE tube to me. The tube is a different material, not rubber, but a clear plastic. I have psyched myself out. I am a little flushed and diaphoretic. The #20 comes out easily as I evacuate the balloon and it slips out.
I prep from a sterile field and follow the xylocaine gel with the more rigid plastic tubing. It goes in easily with a bit of a "pop" as the curved Cruet tip negotiates the male anatomy angle within the body's internal plumbing. I advance all the way damn near to the hub and inflate the internal balloon with sterile water. It's done, it was easy. I go lay down and chill. I am stressed.
Friday Aug 10
The semi-rigid catheter is not comfortable. Any minor movement at it's securing point on my hip or thigh have a 'sewing machine' or 'oil well' effect as the tube moves a bit internally.
By mid-morning I call the Uro's and reach nurse Sara. No doctors are in but she sends me home with a latex rubber version of the #22 and GADS a #24 if I can make it happen over the weekend. I get through the rest of the day, but I am uncomfortable with the different style tubing. It easily pinches off at the angle where it meets the drainage bag tubing and I note what an unsatisfactory product this is.
I send an email to work-I didn't do any fire project work today-mark me off for sick leave I do not have.
Sat Aug 11
The HORROR! When will it end?
The clear plastic catheter, "Simplastic" brand, has become very uncomfortable-it's got to come out Saturday night. I prep everything for sterile field. I put new gloves on and use a syringe to evacuate the interior balloon. I pull off the 10cc I had in this balloon, then I try again and find no additional sterile water in the line. I start to very slowly back the #22 Foley out. It starts to pass and hangs up. This is not unlike my experience when even the smaller catheters were held in place by a swollen prostate. I take my time and it sort of 'pops'. This has a curved Cruet tip made for male anatomy so I figure it's the curve passing through. The cath does not come out easily and, with the deflated balloon fully visible in the open--THE CATHETER HANGS UP! Stuck.
I look down and try to trouble shoot. I can see the balloon, that's not it. What could be wrong? I turn the cath knowing that the Cruet tip is circling the compass points in the last inch of my urethra. It hurts. It's stuck. I try advancing and it moves inward a cm without issue. I start to bring it back out and it doesn't want to come out. I finally and very slowly withdraw it complaints and all. The ports or openings appear on either side of the tubing with tissue shards and a bit of blood.
"I had this thing in only two days and it started to stop up with tissue?", I wonder. Then I figure it out. The cut-outs on this semi rigid material were lined up with the Cruet curve. This made the small circular COMPRESSED cut-out ports act like a carpenter's plane or rasp, shaving tissue off the lateral borders of my urethra. Searing pain.
I work quickly to get the soft rubber #22 Foley replacement ready to go. I don't want swelling to intervene before I get the other tube in. I re-glove. I prep the entry point with surgical scrub. I re-glove, again. There isn't any obvious bleeding. I fill the channel with xylocaine gel and then pass the tube. It goes in easily. I place 20cc sterile water in the 30cc interior balloon using the external port of the double lumen cath.
I take a couple acetaminophens (Tylenol) hoping that they will take the edge off. I have the Hydrocodone APAP (Vicodan) queued up, but I hope not to take the narcotic with it's companion GI tract paralysis.
I am not good company at the moment. Tracy offers to help and I verbally snap. I quickly apologize and ask for some personal time without conversation or helpful banter from my love-mate.
Holy cow. Who would have anticipated this?
I remember the joke about the whore and the leper. "Keep the tip", the customer said as he left.
Sun Aug 12
I awaken at 9:30am. Last night at 10:30pm I finally took the narcotic pain pill. 20 minutes later this "lightweight on meds" had relief and I went quickly to sleep. With the overnight (larger) bag, I only awoke one time to empty the equipment and down another glass of water. The key to any of the catheters and more importantly urethral healing is to flush/flush/flush with fluids.
Tracy brings me hot coffee and oatmeal in bed.
I left off my readers last August in an exciting scene from my PCa adventure--cliff hanger! With calls from Chicago Pete, Murph, Stephanie from The New York Times, and Juliet from FOX News, I guess I owe an update. To any of the media to whom I've declined interviews or opinions on HIFU, thank you for your interest and your support for getting the message out on prostate cancer. You actually have compelled my update here--you were effective even though I'd like to avoid the media spin or opinion. I have a personal experience that may or may not translate to others.
Any of us who have found ourselves within the prostate cancer world find that it is variably, variably, variable with regard to patient physiology/psycology, manifestation of the cancer, the medical practitioner or "artist", "what is known/unknown" of this cancer, and MOST IMPORTANTLY, the accuracy of the initial assessment. TAKE YOUR TIME AND GET A THOROUGH WORLD CLASS ASSESSMENT BEFORE ANY TREATMENT. If you don't know the enemy, you cannot develop an accurate strategy or tactic--I paraphrase Stephen Strum and Israel Barken.
The day of this writing finds me home with the flu and "Chirapada" or "Lucky Accident" showed up. It seems that the use of Tylenol and Ibuprofen alternating every 3 hours for my splitting headache and fever may have reduced the swelling/inflammation in the catheter-flogged urethra. I have been able to manage a weak stream every void, though I do not fully empty. Flu as a gift, who'd of thunk? I have not catheterized for four days. What a joy.
I'm going through my notes to see if I can chronologically carry on the story from last August.
....and now back to
August 17, 2007
My MRI-S at UC San Francisco with Dr. Kurhanewicz team is scheduled for Monday. During a more optimistic time, I scheduled the whole weekend with Cousin Jane and Serge in the Bay Area. Now I'm afraid. What if the cath clogs during the flight? How will I manage? How will it be to have this on-going medical issue at Janey's. I work myself into a fret in the face of several thousand dollars of imaging provided free for me as part of the MRI-S study. I start laughing again. UCSF and San Francisco have among the best of the best in this area. McAninch "wrote the book" on strictures and urethral repair. I get over myself. I cath in the airport, on the plane, in San Francisco, and I'm honest with Serge and Jane about my considerations. They are nothing but support. Life is beautiful. Serge's brother treats us all to oysters, fine wines, fresh bay bread, and a feast of fresh vegies. I can eat it all on my cancer/heart friendly diet--RED wine :)
Jane and I go down to San Francisco for her dental appointment. I take the car and view the City. I pass gas station after gas station unaware of the pending adventure. I miss the turn to Jane's DDS and I "go around the block" to make another pass. Bad move. Chinatown! My little red convertible is dry docked in standstill traffic among the pedestrian rich village. The pressure builds in my bladder, searing pain. I don't worry about it. I can only cath to void. I cannot take the pain, but I cannot abandon the car in traffic. What the? Relief comes as I void and void and void, the natural way. I grab the newspaper and my jacket and shove it underneath me to completely save the venerable Miata. I laugh, be careful what you wish for!! Now what?
I park near St. Francis shrine and go to Caffe Trieste for my drug of choice--espresso. I go to the restroom and no catheter is required. I wait in line for coffee and go outside where a table conceals my "problem". This was one of my worst fears realized in all these cancer months--what if I couldn't control my bladder? Cross that one off. Upon arrival, Jane was concerned for me but our Scandinavian pragmatic humor left us to enjoy our coffee. "Maybe if it's not too bad, we can go to lunch", I said.
I stood up for Jane's examination of the dark side. "I think we should stop by the house!" she laughed.
Monday August 20
Just as Chris Soto arranged a month ago, everything was ready for me near the Giants Stadium where the UCSF MRI-S program resides. I was prepped and asked to lay on my left side. The procedure would have the probe placed within proximity to the prostate--yes, that way. I would then be rolled into the large MRI where my ear-plugs and headphone music would help cut the noise of the magnet. At the very end of the procedure they would insert an IV agent that would light-up the metabolic activity of the tumor blood supply and tattle on the cancer activity. I had been off the hormone blockers for a month in preparation of the test. They wanted the tumor(s) to be active for good visualization.
The nurse practitioner inserted the probe and I was uncomfortable--more than the past biopsy probe. (I was to find out the following month that Dr. Bahn diagnosed by palpation a rectal stricture as well as the urethral stricture. Bummer.) I was then shifted to my back and rolled into the MRI tube. Breathe.... Breathe.... Be here now.... Relax.... I didn't know what the cause of the discomfort was but I endured. This is not a normal experience for MRI-S patients--I highly recommend any Brother with PCa seek the UCSF MRI-S evaluation tool as part of their initial assessment BEFORE TREATMENT.
Done. I was handed my CD images and told that my doc in Boulder would receive a report in a couple days--she did. The tumor volume was highly decreased. HIFU apparently had reduced the tumor volume--my secondary goal if I didn't get "the cure" on my "aggressive" Gleason 8 local tumor. I remind readers that local treatment for high Gleason scores 7 and above are controversial. Also if you're a specialist, everything looks like your chosen specialty would be the best treatment--think about your own life--yah, like my "Eric View". You wouldn't want to be limited by that! Neither do I.
August 21 2007
I am cleared for full-duty with Dr. Rossi our occupational doc. I find out the good doc is a motorcycle enthusiast and attends Leguna Seca's MotoGP every year to see Valentino Rossi. Dr. Rossi also owns a sidecar--one of my life dreams. I am one happy firefighter looking to return to the firehouse. I am still cathing from several times a day to every time--it gives me a near normal life. It's a small price to pay.
Sept 5 2007
Ventura CA Dr. Duke Bahn readies for the guided "Color Doppler Ultrasound" biopsy. This will provide imagery of the prostate and it's surrounds including the seminal vesicles and borders--hiding places for escaped prostate cancer. There is a huge difference with this biopsy--Dr. Bahn is not flying blind or "needle in a haystack". He can pinpoint areas of interest to snap a hollow core needle into and extract tissue. Why am I here?
Late... I hope not too late, I realized that all of us can put world class medical help into the "possible". I had myself convinced that a blue-collar guy just didn't have access. I looked for THAT evidence and I found it. My belief guided my observations--I was "right", a match for my point-of-view. I attended a "Breakthrough Seminar" with Landmark Education on a Thursday night in August and the next morning within 5 minutes of a phone call was on the list with Dr. Kurhanewicz at UCSF--they would pay! Emboldened I called Dr. Fred Lee in Michigan a venerable radiologist who HAD PROSTATE CANCER and invented the whole field of color doppler imaging for prostate to help cure himself--he did! Dr. Lee asked how come I didn't go to Duke Bahn in Ventura--Bahn was closer to me. I told the friendly voice on the other side of the call that he (Dr. Lee) was near my parents and I wanted to go to "the man". "Dr. Bahn is the best for you" Dr. Lee went on "he is the very best--how do I know? I trained him" he chuckled. "Dr. Bahn is working on some very exciting things that may help you with your high Gleason in the future, go to my friend, Duke Bahn". I thanked the good Dr. Lee and mentioned to my cynical self that "See? a blue collar guy can hook up if I'M IN ACTION" the lesson from the evening class.
I had called Duke Bahn's office and the staff mentioned that Dr. Bahn would be busy for some time readying for the upcoming Prostate Cancer Conference put on by the Prostate Cancer Research INstitute - PCRI . "Oh yes, I'm attending that myself, I'm looking forward to it," I shared.
"Just a minute, if YOU'RE going to be at the conference, maybe I should speak with Dr. Bahn directly." She came back to the phone. "Can you be here Sept 5 for imaging and biopsy?".
(I'm in tears now as I remember this--I am one lucky son-of-a-gun and I've had some fantastic practitioners and staff supporting me along my way).
The Korean immigrant greeted me and told me what to expect. He was very "present" and his passion and interest really showed up. I would lie on my left side facing the color monitor and observe the image from the probe (the tiniest yet!) as it transmitted it's sonar like image of the prostate. Bahn hadn't had too many HIFU impacted tissue prostates to look at--the echo would be different, something new. (No one has a lot of experience with post-HIFU patients). Bahn gently manipulated the probe in considerable contrast to the rough first surgeon of December 2006. He pointed out areas of interest next to the urethra and warned that I must remain still to avoid further damaging the burned waterway. "You will feel little krick like rat-trap, I think I take six samples" he instructed in his Korean flavored English. Indeed, it was only like a rubber band--a small one, and I didn't recoil or move. Not a big deal. "OK, I'm done, I'll see you in my office".
I dressed and walked into the windowed beautiful office complete with orchids. Dr. Bahn went over his hand-written initial assessment and stated that while there was cancer, it was a small amount and near the urethra. He did not see spread into the vesicles or the wall of the former uncooked organ. He spoke of "what to do" options and sort of ruled out radiation, surgery, HIFU, or his specialty, cryosurgery owing to the damaged/burned urethra and the non-predictability of the remaining HIFU cooked tissue. He concurred with Dr. Ripoll and some of my own thinking that with high Gleason the androgen blockade (aka Androgen Deprivation Therapy ADT aka Hormone Therapy) would be the route to go. What a great experience and what a great staff. Incidentally, Dr. Bahn is doing research on Dendritic Immunotherapy which may offer systemic or high grade cancer patients (me) another full-body therapy. You can read more at his website Prostate Institute of America
I gobbled down Casodex and Avodart immediately to re-start the ADT2 of 3.
The Cancer Conference. I'll be brief. If you can go, GO! You'll meet and hear from some of the best within the prostate cancer community--doctors and researchers. As importantly you can meet the patients and get their own experiences. I'm looking to go back this September. Nutrition, supplements, guidelines, on-going research, HOPE!! I really walked away with I ONLY HAVE TO SURVIVE THIS LEG OF THE RELAY AND I DON'T KNOW WHAT THE NEXT LEG IS, IT MAY NOT BE INVENTED YET. Run the best life you can and be happy--you'll assist your immune system. Prostate Cancer Research INstitute - PCRI. Get on the mailing list for this great organization.
I come in for a Vitamin D3 shot. My oral mega-D3 has not yet brought me to the desired 70-100 range. Doctora Ripoll orders a 50,000 unit shot.
I come into the office for a Lupron shot, thus completing the ADT3 regimen. I bare the largest muscle to receive the long-lasting medication.
I initiate another strategy to manage the urethral stricture. In-dwelling Foley catheters of increasing sizes every couple days. I start with an #18 Foley using sterile technique. Given the safe-cracker's touch and the feedback in my own body, the staff concurs with allowing me to pass the tube. I use xylocaine gel to dilate and anesthetize the passage. I place the Foley and Ripoll guides me to insert up to the end prior to filling the sterile water balloon. The apparatus is then withdrawn until the balloon seals against the inside of the bladder. I am hooked back up to a leg bag and off I go.
After a successive catheter size insertion it appears that I'm having a bladder infection. I start on Cipro and the Foley comes out.
I palp and feel an uncomfortable irregular mass in my testicle. Am I a two-time winner with a second cancer? I do sitz baths and flush hoping that the swelling of the mass and the growing bilateral hydroceles (sack filling up with fluid) will go away.
The swelling does not go away. I can barely walk. I go into Ripoll's for evaluation. Her kind Spanish Mama style and underlying academia settle me into "I don't believe it's cancer my friend, I think you have epididymitis or infection of the epididymis". The zany jelly fish like tentacle structures that inhabit man-world down there. She put me on more antibiotics and in two days the sub-adventure was resolving.
I get a three month Lupron shot. Wow, that's a lot more stuff. My loin is sore for several days following.
November/December 2007/January 2008
I cath most times, most days. I have found that if I use a smaller cath, it has the appearance of not aggravating the inflammation of the passageway and I have a little day-long or two-day hiatus where I do not have to cath. These occurrences are unpredictable and I cannot tie them directly to anything I'm eating, my activities, or my management of the urethra. After I totally close down again after one of these hiatus, I use the smallest #14 Coude Tip cath, next void a #16, and next an #18--these are all straight, single lumen caths. I'm crazy about cleanliness described elsewhere in the story; I wear gloves and clean before/after each time to the point that my hands are all split open (dryness from ADT3 and too much soap; now whenever I'm doing mechanicals on the fire apparatus or gloving for a patient, I put hand-lotion on inside the gloves and treat the leatherized skin).
WHAT, DEPRESSION? Shortly after Christmas and the anniversary of my diagnosis, I have my first (and I hope last) real pity party for myself--how long will this last, how come no one knows what to do, why can't I make it better. I marinated myself in the little stupor for the better part of a morning while the family was out of the house. Was this also the hormone blockade kicking in? It takes several months for the testosterone and it's cancer food substrate, DHT to come down to effective treatment levels. Personality effects and others sequelae start to show up. By noon, I was tired of feeling sorry for myself and looking for a nice walk down to the post office a couple miles away. Blues love exercise. Change your location, change your mind. I re-brainwashed myself for the better good turning away from my funk.
BEWARE, there is a lot of support for the cancer VICTIM role out there and it's easy to take in people's well meaning rescues or "ain't it a shame". Some other features of VICTIM role are "I can't", "It's not fair", "I don't wanna", "I can do it myself", "I cannot think", "I'm confused". While pretty normal for us as human animals, I find it doesn't serve my immune system, it keeps me making excuses for not being in action, and I place blame on someone/something including me. "It's the machine, it's the practitioner, it's my biology, it's my fire/hazmat contaminated job, it's the stress at home as a dad, it's the FILL IN THE BLANK". None of that has me making choices and being in action. The other thing is that it neglects Dr. Barken's wisdom of LIVING YOUR LIFE between doctor's visits, which is the majority of my time.
I'm not saying don't accept others' help. It's a given that I don't know what I need to know in the area of prostate cancer, given that the top researchers have many puzzles. I need their help, everyone's help, which is often not in the make-up of service people. It's a new thing for me to accept coaching and help.
So, I'm back to my pre-amble on this update. I'm good. I'm well. I'm home with the flu. I'm peeing without cathing for four days at this moment. To Juliet at FOX and Stephanie at NY Times and YOU. "I don't have answers. I'm on the journey, the adventure. I have experiences and information about my experiences. If you find them helpful--plus/minus--I hope I'm fulfilling on generosity as my many other Brothers and care-givers have here and other listservs.
My one opinion is: TAKE YOUR TIME, DON'T BE AFRAID, AND GET VERY HIGH QUALITY DIAGNOSTIC INFORMATION **BEFORE** YOU TAKE ON ANY TYPE OF THERAPY. MAKE USE OF DR. BARKEN'S ARCHIVED INTERVIEWS WITH SOME OF THE BEST OF THE BEST at Prostate Cancer Research and Education Foundation. "I can't" won't serve.
It costs the same if not less to go to the very best in the nation. If you are injured by therapy, you want to know that you're just the smaller percentage of men "taking the bullet" for other's statistical success. As others have said, there is no free lunch with prostate cancer treatment. There is no complete answer. Only you have the answer for you. Get many opinions (not from partners or associates) prior to accepting treatment.
DO THE LIFESTYLE CHANGES NOW. Nutrition, exercise, spiritual and/or stress relief (yoga), and get a support team in place where you can both get and give support. Special thanks to all my medical care providers including receptionists, imaging techs, lab personnel, and docs. Thanks to Hunter and Tracy for standing by a loved one on an interesting and scary sounding adventure. Thanks to Patrick, Dan, Richard, and Nick, my fire crew for setting the whole crew on heart/cancer healthy food, daily exercise (P90X right now), and yoga. Yah, yoga in the firehouse--go figure. We and our relief crew members find yoga really allows a nice day of availability and "being present" for those we see having "the worst (or last) day of their lives". I'm less likely to be inappropriate at home following an unslept overnight--by mutual agreement, I take a nap before family interaction. Thanks to the many of you in the fire service, in the cancer community, and elsewhere for your direct a nd indirect support.
Some aspects of the cancer adventure have truly been gifts. Cancer is not the worst thing--dying without cleaning up with loved ones would be. Cleaning up with anyone that needs cleaning up with. Some people never get that their whole long lives. Check out "Bucket List" at the theaters and "The Last Lecture" on YouTube.com.
Bucket List Update: I cleaned up with several co-workers from Littleton that I've created drama with in years past. I have a sidecar on my 02 H-D Ultra Glide. I have an 08 with ABS parked right behind it for two-wheeling. I am writing to be generous to others. I am working on my relationships with my wife, my teen, myself, and likely YOU at some point. I pay my son $1 every time I "make him wrong" rather than share things that **I** don't like about his behavior (dishwasher, counter tops, no chores, school--these all keep me from enjoying a great kid he is--he's 15). I want to support YOU fulfilling on your Bucket List and creating a life you love. I'd rather be happy than right--it helps my immune system. I've accepted work within the National Fire-Fighters Near Miss Program if I whip this flu and fly to San Diego in two days time.
Live Well, Live Strong, Brothers and care-givers. To steal a current political moniker for us cancer guys and gals "Yes We Can!"
Wednesday December 24, 2008 Christmas Eve Day
My second anniversary of my PCa diagnosis. Where am I now?
First off Happy Holidays to everyone out there in our Adventure Club of PCa! Whether you are a patient or family, thanks. Thanks for being there for yourself or your family member. If you are here reading this, you are up to empowering yourself and others. Thanks!
The consolidated update is that I have rising PSA after 15 months of ADT3 (Lupron, Casadex, and Avodart). I'm getting new intel or I'm up to being "re-staged" as those in the business say. My bone scan last week was unchanged and I'm scheduled for Prostascint CT fusion imaging next week.
I saw an additional local oncologist last week who took me off Casodex (it may have an anti-cancer effect in a percentage of cases to DC this med). He is into the re-staging game and still recommending more local treatment-radiation, etc-on the localized remaining Gleason 8 cancer. For high Gleasons, any local treatment is controversial, be it surgery, cryo or the like. I'm not rushing on this idea, though my main cheerleader and wife Tracy wants me to "do something" to get rid of the cancer. There were tears in the exam room as we two come from different understandings and/or mis-understandings of this shadowy cancer.
My urethral strictures secondary to HIFU and the devastating "blue laser" corrective surgery-bad-have me totally shut-down to normal plumbing capability.
I've CIC'd (clean intermittent catheterization) every time I pee for the better part of a year now. I've managed the Bard red rubber Coude-tip with re-use and sterilization. Recently, I had the splendid addition of "hydrophilic" or "water loving surface" disposable catheters. These have a little sterile water inside their packaging and self-lubricate. They are way handy for what I call "combat cath'ing" when I'm at public restrooms, traveling, riding the motorcycle, etc.
I've "lost my job" is how a whining self might express it. Actually, Littleton Fire retained me for months after I came off line, July 2008. I was weakened from the ADT3 and lacked the go-power and sustained strength for firefighting. The City recently decided it needed to manage it's budget more conservatively and we, the handicapped, were released to pursue disability or retirement-I'm still figuring out what's next.
The upside is that I have time at home to share my personal story on YanaNow. The downside-is there any? I guess I want to frame this as a downsizing experience and that I "get to" play the austerity game better. Rather than going out to eat, I'm experimenting with the pressure cooker and new "portable induction cooktop" (a green-leaning technology that is faster and more efficient-saves money!). You get the idea-turning lemons into lemonade with my circumstances.
I have an excellent buddy from long ago-we were in Nepal's Solu-Khumbu together and the fire academy-who recently checked in with me. Brian O'Malley (Denver) is now doing corporate and personal coaching. During coffee he inquired as to what I've learned with my various life circumstances.
I heard myself say:
The easy role is the patient-the tough role is the family member. None of us would want to see our family member go through this-we'd rather take a bullet of sorts, ourselves. Remember to check in with and treat the family-they've got it tough with MY/our cancer.
Go with the flow. The Buddhists have that saying regarding the 'water flows around the rocks, never through the rocks' in a stream. If I'm fighting my circumstances, I'm going to hit more rocks. If I acknowledge my circumstances and embrace all there is to learn, I can enjoy the ride in the current of my life.
When the student is ready, the master/teacher/guru will appear. I continue to learn a lot about the world and myself as I continue with the cancer experience and what it teaches me.
We only have NOW. If I'm carrying around the past-"it should/shouldn't be like this"-or worrying about the future "I could die early, maybe I'm not with the right doctor/hospital/strategy/lifestyle (name it)" - I'm missing out on right NOW. As Dr. Israel Barken promotes, there is a lot of life to be lived in between doctor visits.
We, including the doctors, don't know what we don't know. While that's irksome to not have a sure-cure, etc, it's comforting to know that any dire diagnosis or prognosis is subject to…. Change. I need to run this leg of the prostate relay as best is possible-no one knows for sure what the next relay segment will look like. This PCa field changes daily and patients change daily. Yesterday's "truth" may be tomorrow's folly and vice-versa.
And what I got about me from Brian's sharing about himself was:
I've been pushing/selling my opinion/solutions rather than "coaching" or "listening for the right questions" in my support of others, my parenting, my friendships, and my self-support. I am now stepping up my listening-my listening to myself and my body as well. I'll have less answers and better questions in the future-By gosh, I think I'll learn more, and LIVE more!
So. Life is GREAT. I have recurring prostate cancer. My magnificent support group of family, friends, co-workers and likely YOU are absolute gifts-Wow! The adventure of my life continues. I love good adventures.
August 10, 2009 Update
In March 2009, Littleton Fire Rescue could no longer justify keeping a lieutenant position occupied with non workable lieutenant. I was given the option to retire or "be terminated". Even though I had "light duty" assignments, I wouldn't let myself short the time and attention the jobs needed-I was dead tired and starting to fail on energy (with the ADT3 side effects). My red count was down and I didn't feel I could "nap as needed". For all the wrong reasons, it was probably better for my health that this crossroads appeared.
Few of us knew that the State of Colorado offers no disability pension to police and fire over 55 years of age. There is also no medical insurance coverage for retirees of my fire department. I am grateful that wife Tracy has her job and her medical coverage. There are many facing cancer challenges who are not as fortunate.
I was exceedingly lucky that one of our Human Resource benefits administrators recognized the hole in coverage for police and fire - I have a small disability pay out monthly for two years that coincidentally matches the uncovered portion of my medical bills. Lucky...
On the sad day that decades-old friends had to deliver the bad news to me regarding the end of my 28-year employment, I learned that my PSA progression had stopped and was actually LOWER! Given the two extreme life conditions, I'll take the arrested cancer growth!
Re-staging the cancer:
I was re-scanned in January 2009 for Prostascint scan and bone scan. These tests are not very telling but they are the best we have (shy of a trip to Holland) for imaging. The scans showed nothing more and nothing less than before-good findings overall.
Early in 2009 I was coached by a medical oncologist to seek adjuvant radiation therapy. This advice ran counter to my research on post-HIFU damage. The follow-up with a radiation oncologist gave a frank assessment that the additional radiation on top of the HIFU damage could be disastrous. A professor at the University-he did recommend a time-release NSAID. He said the theory was that this medication might reduce the catheter inflammation and the co-lateral damage to the immune system from "inflammatory process". This appears to have helped both the voiding flows between catheterization AND my PSA has remained low.
I also went to a nationally known uro surgeon specializing in complicated plumbing repairs. His even franker evaluation was that additional radiation damage might lead to systemic infection and early death pending bowel damage. He put me in touch with a patient who had one other type of surgery that allowed for emptying the bladder via trans-abdominal catheter and "port". This could be implemented after surgery to remove the urethra and what remaining local cancer could be seen. Given my high Gleason score of 8 and the tendency to have "bio-chemical failure" (recurrence of cancer) regardless of surgery, I opted for keeping my current state. He did not disagree.
He also performed a cystoscopy. The doc showed me the video image of Grade 4 or "worst case scenario" on the urethral burn damage and scarring. While that wasn't what I wanted to see, it confirmed my experience of not being successful with dilatation procedures and or 'remaining patent' (open) without catheterization.
On the local front:
My local uro has increased my Vit D3 to higher levels. 5,000 units/day orally was only bringing me to the 30's when 80-100 measured levels are recommended. I give myself weekly shots of 50,000 units in the anterior thigh. (I've trained both Tracy and Hunter to give IM shots to me "on the blind side" as well). My last measured Vit D level was 55-is my tumor volume burning up the vitamin D? Is Vit D helping hold my PSA progress in check? Stay tuned fellow adventurers.
How 'bout that urethral stricture damage from HIFU?
I cath most every time-I prefer the Hollister Hydro Soft and the Astra LoFric caths that include a little package of sterile water and are self-contained. This allows me to be fairly normal in all my activities. If I'm in a large group function the added time in the bathroom during stops or breaks is a consideration. Picture a group of bikers lined up outside the privy while the cancer guy is working through the not-so-fast cath procedure.
I went to Daytona on a motorcycle trip in March 2009 with a third of a saddlebag filled with catheters. I additionally shipped a box of catheters and a 7.5 mg Lupron shot ahead to the destination so I could manage the oncology and the plumbing on the way home. If any readers are faced with CIC (clean intermittent catheterization) I've necessarily accumulated a list of tricks-just email or phone me if this daunting idea is paralyzing you. I have a pretty normal life including getting up 4-5 times overnight while camping and managing all that with success. I've had one bladder infection in two years of CIC-that's pretty darn good when I compare with the many cath infected patients I've shipped over the years as a paramedic. If you're really feeling depressed about catheterization, go check in on Major Phil Packer! Now WHAT can't you do?
So what's my outlook at the moment? I think I have a fairly normal life. I tire easily and I work several naps a day into my schemes-short naps. My old self still informs and misadvises my current self as far as over-extension. I really have to watch that. I've been able to do some trips on the motorcycle but I prefer going alone or with one or two others such that I can manage both the rest and the plumbing issues.
Money is an issue, even with good insurance. I'm enjoying simple camping, avoiding motel bills and I either pack food or eating simply. As a family we rarely go out to eat. With savings eaten up by medical bills, we may have to make some tough decisions on our other resources and choices-not unlike many in the US facing the changing employment and economic conditions.
As I re-read over this it sound a bit dour. That's generally not the case. I scan the prostate cancer support listservs daily and I look into the literature weekly for "what's my next step", but that's about it. At this moment, I have enjoyed a year where the cancer is not the first thing on my mind. And that's a very good thing.
I've supported many kids' charities including Children's Hospital, MDA, Burn Camp, Make-A-Wish, Pediatric Brain Tumor Foundation, and more. I work with other firefighters impacted by cancer through work with the Firefighter Cancer Support Network. I've assisted with The Honor Run and Fisher House to help our young military and Veteran heroes get back into life following battle injuries.
I've knocked off FOUR regional rallies with the firefighter motorcycle riding group, Wind & Fire MC. The "Road Therapy" is incredibly helpful for maintaining a cheerful outlook. With W&F, I have my little vestige of firefighter identity, I'm working in a team on charities, and I'm serving others that are far less fortunate than my current circumstances. It keeps my head on straight.
Yes, I work with memory/organizational issues, fatigue, weakness, ego busting comparisons with my past self, and the metabolic syndrome of ADT treatment (and poor personal choices). I use computer/iPhone planners. I let people help me with organization. I inform others on what my challenge areas are. I let others help me-that is really new. I am kinder to myself.
Thanks for all of YOUR help.
Be well. You are not alone.
August 18, 2010
Taking a few months "off" cancer:
After a couple years of the androgen blockade and it's side effects accompanied with below detectable PSA, I opted to go "intermittent" with Lupron. I stopped the drug in February 2010 and "got away" with no PSA rise until May 2010. The trending quickly showed up as monthly "doubling" since May, so I will return to the "hot sauce" or Lupron after color-doppler-ultrasound imaging with Dr. Duke Bahn out in Ventura CA, next week. (The cancer is best imaged while it's active).
I've been a devotee of Dr. Stephen Strum's writing in his generous help forum. I knew that Strum's own impression on cases like mine is that the Gleason 8 with a previously proven aggressive pattern is not a candidate for intermittent therapy. Like many here, I fight back the resentment on the impact of androgen blockade on me, my family, and it's risk shifting to cardiovascular disease. It's a deal with the Devil to suppress PSA, stave off metastasis, and stretch out the years here on the planet.
I opted to give intermittent a try and I now have the clearer vignette of what the impacts of Lupron are on me. The fatigue, the memory issues, the "not me" personality stuff, the sluggishness of mind, the single devil-deal regarding libido, all dropped off within a month. Just as my testosterone is making a comeback, so too, is the cancer. Damn I like my "T". It was/is so much a part of me.
While I continue to make contributions in the world and feel that I'm not just a horse or firefighter put out to rest, the giving up the big part of "ME" to be that guy impacted by Lupron is a pricy price.
I also took a few months off my aggressive research of cases similar to mine. I turned down the daily scanning of the several listservs regarding advanced cancer and made it a point not to offer "my health challenge" in conversation regarding early departure from the fire service.
I think I showed up a bit more for my son as he prepared to leave for his Army commitment. Less occupation with me--more availability to life with my new clarity AWAY from the Lupron fog.
That plumbing thing:
I am still cath'ing nearly every pee. I just got back from my closest couple of brushes with plumbing disasters. I was on a trip out East to pick up a vehicle and ran into some delays. I had only packed enough catheters for a week out. As I entered Kansas late one eve, I realized I had two catheters left to get me back to Colorado. I wound up skimping on fluid intake during hot days of motorcycle travel and pushing on when I was tired.
This past weekend a similar instance occurred. I went up in the mountains for a service for a fallen young soldier from Monte Vista CO. I opted to stay until Final Honors on Tuesday rather than return the hundreds of miles to Boulder. I had no worries as I zipped through my backpack stash of equipment "knowing" that I had an entire box waiting in the sidecar. Well, that was incorrect. I ran out, attempted to void normally (drops) and had tremendous kidney pressure and pain in both flanks.
I had to quickly excuse myself from Santa Fe Dave's house to strike out for Boulder and catheters. It occurred to me in Taos that I might find a medical supply house and indeed I did. They had the red rubber caths by a company I had not used in the past. The soft rubber did not have the stability of the other products and was difficult to pass through the several urethral stricture (burns) roadblocks. The ports or openings also were less forgiving and the withdrawal brought a rasping trauma complete with trimmed delicate tissue. I stayed for the service and went through eight catheterizations with the red rubber, but I'm still noticing pain as I type here a day later.
I partly have concerns about increased blockage or swelling at my very limited plumbing connection because of cancer growth. The remaining cancer is in the area of the urethra and may be causing the trouble with ongoing catheterization. Should the cancer spread, the nearby organs are in harm's way in addition to the bony mets threat.
Part of my head therapy regarding my own difficulties is that I am continually around folks with far greater challenges at Childrens Hospital and among our young returning military disabled/dead. That service to others following my own long and splendid life leaves me little ambition to muddle over my own story.
Now what and other stuff:
I have heard that another fellow that had the HIFU is actually having his prostate GROW BACK! I'll be interested to see what I find with Dr. Bahn's assessment via imagery and biopsy next week. Am I providing more substrate for cancer? Do I have unhappy prostate tissue throwing off PSA (probably with a doubling rate it HAS to be cancer not irritated prostate tissue).
As I see with my Yana posts, the topic is cancer so readers only get my cancer moments. I have a great life - we are a happy little married couple with a kid fledged to find his own way in the world. We invent our intimate moments in new ways--the old ways are typically unavailable with occasional unexplained miracles matching the frequency of comets. I wish everyone here with the disease a great life. It's what we make of it - isn't it?
I went off the blockade last Feb after a full year at non-detectable PSA ultra while on that strategy. Since May I've been doubling on PSA and hit 7.0 this last go 'round. I was Dx Dec 24, 2006 Gleason 8, failed HIFU Jan 07, started blockade Sept 07.
I REALLY REALLY enjoyed being off the sauce and having a little of my past life capabilities back. It's a deal with the devil--I was very clear of all of the side effects of blockade while 'off' and so there's a big part of me having to resign to the telltale PSA findings and need for treatment now. I had rising PSA back when on triple blockade with Lupron, Casodex, and Avodart. I stopped the Casodex and had good control of the PSA to non-detectable after that.
I know how "I am" on the Lupron as far as side effects, and, I'm a guy who couldn't do the 3 or 4 month shot as the PSA would rise--I needed the every four week shot. I figured I'd give the Degarelix a spin and received the large first dose bolus, sub-Q, in the belly on Thu. That eve I had all the local injection site side effects.
This morning I had the blahs--I did my 2 mile walk, did a few chores around town and then hit the rack about 2p with hot showers. Low energy, lethargy, honking headache, and slow moving with flu-like muscle soreness. I'm up and at it after a hot shower at 6pm and I'm just checking in with any of the others here using the Degarelix?
Eric comments that he doesn't think he'll have another chance of a therapy 'vacation'.
Starting with the conclusion. Stage 4, mets in my spine and exploring my options as a 58 year old.
So the past year has been both a great wonderful adventure and a scary roller-coaster ride. I had been a full year below detectible PSA (on full hormone blockade) possibly indicating that I could take a recommended "Holiday" from the triple androgen blockade (and it's side effects). In Feb of 2011 I went off the sauce and within months had strength, manliness, and a very good taste of the fire retirement that I had dreamed of. Lots of travel, lots of great family time, lots of energy for charities and stuff I enjoy doing.
I saw Duke Bahn (Ventura CA) again in August to have Color Doppler Ultrasound guided biopsy while I was not artificially suppressed by the ADT3. To both of our surprise there was no active cancer anywhere near the prostate region. His biopsies contained only the weird post-HIFU mystery tissue. Bahn was concerned about the rising PSA even at tiny levels given the aggressiveness of my Gleason 8. Conversely, my local doctor was encouraging me to holiday a bit longer given the need for the body to recover from the actual ADT3 damage over the cancer damage. I split the difference and went back on ADT3 in September. Now I'll back it up a bit on the story...
About May my PSA started climbing in the ultra-sensitive range (below 1.0). I remained on Holiday but of course I was looking over my shoulder with dread. First I had a r/o cardiac with sharp sub-sternal pain for days. Then I had pain increasing with deep inspiration so I was treated for costal chondritis or rib muscle pain. The pain increased through the summer until I took a long 800 mile July trip by motorcycle. At that time if I sneezed or coughed I had black/electric lightning pain down my back and both posterior legs. I went to a couple different chiropractors hoping for relief. I was to find out that was like handing 5 yr olds a vial of nitro.
Upon return, I went to an unnamed local Colorado ER to beg for an MRI that my GP would not grant but only received Thoracic plain films read as normal.
When I could no longer stand up from a seated position in September with my ski pole, I requested that my wife drive me to Swedish Med Center in Englewood CO (the receiving hospital of miracles from my many fire/paramedic transports over 30 years). Within one hour the staffers came in with MRI results and long faces. Thoracic vertebra 4 was fully infiltrated with suspected adenocarcinoma (PCa mets) and was growing into the spinal cord creating paraplegia and loss of function(s).
Sept 9 2011 was surgery to remove T4 and fuse T2-5. I was actually ecstatic to be in capable hands with all my old pals at SMC. I was also a bit ashamed of myself for being a cancer patient and not reporting these symptoms to my oncology group. I missed it.
What's going on now? I'm on a plane to visit the man-child who has become a combat medic with the 82nd Airborne "18th FIRES" group at Ft. Bragg NC. I will make five years survivor/thrivership since Dec 24 in just a few more days :). I have also looked back and realized that my aggressive cancer was likely active in 1995 when my PSA was 1.5. YOUNG MEN BELOW 50 SHOULD NOT HAVE PSA'S ABOVE ONE. With all the controversy plus/minus on PSA's, even the nay-sayers from National Cancer Institute are having no debate on the value of PSA's taken to identify young men with aggressive disease. FIREFIGHTERS READING THIS TAKE NOTE.
I have a wonderful life. Tracy and I are working with Israel Barken MD out of San Diego again and just visited Mark Scholz in LA CA regarding strategies for my aggressive advanced disease. There are several studies I looking at with the new immune system manipulations. I feel like I have advocates who hear what my concerns are. I've got a young oncologist in CO who is not afraid to learn and collaborate with others who specialize in advanced PCa (he's a general oncologist). I'm on Xgeva for bone preservation and interruption of infiltration opportunities for my bone-loving mets.
Eric is in hospital at present battling the consequences of Taxotere. He says he will update when he is able to.
Eric's wife, Tracy Carter Sondeen, has written a very touching poem ANEURYSM that many who have a loved one diagnosed with prostate cancer will relate to.
Update January 23, 2013
This is written just after my second three-week IV infusion of Taxotere chemotherapy. I am doing really well at the moment and hoping that I can reduce my overall PSA pain and restore some function in my spine.
2012 was another year of adventure for old Eric. The first part of the year I was recovering from the surgery in November 2011 however we had planned a trip to Maui from February 1 to February 15, 2012. Just a couple days prior to the possible trip cancellation I actually started to feel a bit better and thought that I could do the entire trip out to the islands on the plane with my Titanium metal back.
The trip was spectacular in every way but the real highlight was finding the Maui Canoe Club. The recreational six person Outrigger Canoe Club paddles off from the north end of Kihei and they have a special organization called the Mana'olana Pink Paddlers. This incredible group of cancer survivors, predominantly women, have received grant support from McDonald's restaurant chain and other sources. The support I felt spiritually physically emotionally in nearly every way is hard to overstate. I recommend this group to any cancer survivor.
Following the September 2011 surgery I continued on ADT therapy which includes Lupron plus Avodart daily dose. I also was put on the schedule for Provenge in June 2012.Following a month or two of arguing with the Cigna insurance company I was able to receive Provenge immunotherapy from Rocky Mountain Cancer Center in Denver.My cost was still thousands of dollars.Retail is $97,000.00.
Apheresis for Provenge was handled out at the Stapleton area at the Bonfills Blood Center. (Apheresis is a procedure that separates your blood into its individual components.) I was re-infused with my own cells returned from Seattle following the weekend. I was normally drawn Friday at Bonfills and then infused on Monday at the Rocky Mountain cancer center in Denver.I had central line installed in my left upper chest and it served well in until the third and last infusion when I started to have fever, uncontrollable chills, and a possible infusion reaction to the last go around on Provenge. The central line was removed immediately after by a surgeon and my symptoms resolved nearly immediately.
Like every patient who receives Provenge, how do you know whether it worked or not -- I don't know. I do know that I had significant reactions each of the three times that it was infused so I'm fairly certain there was an impact on my immune system. I did not require any infusions or additional booster drugs to dial in red blood cells and white blood cells. Those all seemed to do very well. My calcium levels were actively managed during an apheresis to sidestep the cramping symptoms.
In August 2012 I started to have a return of neurologic symptoms to my lower extremities similar to the ones I had leading to the 2011 back surgery.I went back to see Dr. West and John Novak physician assistant where additional imaging showed that there was soft tumor in the area where the other surgery had been done. I was then scheduled for another open surgery with the neurosurgeon for removal of the soft tumor in September 2012.That surgery was infinitely easier than the one the year prior and I was released from the hospital the following day. It's good for me as a geek I was to receive my new iPhone 5 so I was really interested getting out of the hospital.
Dr. West was unable to get the soft tumor anterior to the cord so I was referred to radiation oncologists both with regular radiation and with CyberKnife capability.Dr. West had advocated for the CyberKnife given where he saw the soft tumor plus the difficulties with managing tumor destruction by radiation at the cord without injuring the cord itself. I got to hear both stories from the two different radiation oncologists and I chose to go with the CyberKnife based on Dr. West's recommendations.
CyberKnife was accomplished at the bone cancer treatment center near Skyridge Hospital in Lone Tree, Colorado. Dr. Gregg Dickerson and his physicists engineered 192 target strikes each of five times carefully avoiding titanium hardware. They targeted the saddle shaped tumor in front of the spinal Cord.
In the middle of the five radiation treatments I was granted a short hiatus where I visited the California Bay Area. The getaway for Tracy and me to my cousins' place in Marin (north of Golden Gate Bridge) California was spectacular. I also got to fulfill on my bucket list dream to ride in the Johnny V Memorial Toy run sponsored by San Francisco Firefighters and Wind & Fire Motorcycle Club (firefighters).My good Brothers even got us out in the fireboat for a cruise around the bay.
May 10, 2013 Update
Hey, I'm here! Following the CyberKnife Oct/Nov 2012, I was fortunate to be accepted for new PET imaging by Dr. Fabio Almeida, MD Arizona Molecular Imaging near Sky Harbor Int'l Airport in Phoenix.Fabio's C-11 Acetate PET Scans are a magnitude more accurate than even the touted F18 NaFl PET scans.(A C-11 Choline PET version is available at Mayo Clinic and others).I flew the Southwest Air cheap seats to PHX and was scanned on Dec 19, 2012.
The image verified both the remaining soft tumor and the diffuse bony metastases, leading all my docs to recommend that it was time for chemo.Taxotere was started the day after Christmas 2012 and I continued through the end of April 2013 when I caught a flu bug going around and took a real digger during the vulnerable period with low white and red blood cell numbers.Coincidentally, my PSA started going back UP.That was after some thrilling reductions--PSA cut in half every three weeks from Christmas to April.We discontinued chemo for the time being.
So now what? I started on Zytiga (Abiraterone) combined with my Lupron.I also am on Zometa IV bone saver, Vitamin D3, Prednisone (to replace steroid lost with Zytiga), and no PSA results yet (I'm one week on the new med).
For those battling insurance companies, I ditched the SECOND DISEASE called Cigna Insurance and went to Kaiser-Permanente. The folks at the K-P HMO have been stellar and stopped the 2012 $20,000.00 uncovered medical expenses bleeding plus the many hours a week I would spend attempting to get things straightened out, approved, or otherwise vexing Cigna behaviors. At five months in, I'm very happy with K-P in the Boulder/Denver service area.
Of special note, is the K-P Palliative Care department. This staff of docs, nurse practitioners, psychologists, have all assisted my family with help, support, and information not found with any of my other programs. I'm especially sensitive and therefore reluctant to use narcotics--they paralyze my GI tract.I now have a flow chart of management tools from Palliative Care that allow me to use the narcotics on days when the bone metastasis is sounding off...and no GI impaction.
From BED for five days straight the first cycle of chemo to out of the house every day afterward with palliative care support. Magic.
I celebrate every sunrise and if I happen to reach a birthday I'm a very happy lucky guy. March 15 was my 60th birthday. There was doubt that I'd make 60 back in 2007. I'm happy to be here.
Be well. Apologies that I'm so late on this update.
November 30, 2014
Apologies. The loss of Brother Terry and others hit me harder than I thought. I've been hiding out.
I'm currently signed up with Hospice in the Boulder area to get Tracy the resources lined up for the array of eventualities we adventurers uncover. I'm home, traveling, doing most activities unless... I'M NOT. There's no in between anymore. Really good--really bad.
In May 2014 I walked into my GP to get aid for my chemo pounded feet (like diabetic feet) and possibly relief on the hemmies secondary to Zofran/Narcs. Instead I melted down and bawled like a baby watching the poor scientist's empathetic face. I heard myself say "I don't know who I am". Then and there I ceased all industrial cancer treatment and started the long road of backing off long term steroids.
I became quite sick at times with immense pain at all mets sites. Vomiting and weakness, dehydration, and fatigue like none other. I hated and learned to love baths w Epsom salts two and more times a day. I fully transitioned off narcs using Colorado legal cannabinoids, specifically CBD cream for pain and CBC for redux of inflammation over tumor sites in my back (Both non psychoactive). I initiated FECO or "fully extracted cannabis oil" for overall cancer management with additional diet changes.
I've had three scary rides where it felt like the elevator cable broke and I was free falling to "the end". Strangely it just stopped and I emerged looking like a healthier guy I once knew prior to blockade, edema, weight gain, steroid damage, and a destroyed stomach (most of our immune system). I'm off all Meds and side effect meds, BP meds, antibiotics EVERYTHING.
Back to FECO. The only way to insure viable non scorched, no solvent, no mold or pesticide oil is to grow plants and make your own. Even in legal states there are too many variables, so... I don't have energy or time to grow so I have to trust the dispensary I buy flower from (oil makers often use trim or non flower less active) and I extract it with Everclear (200 proof food grade ethanol) with a small essential oils still.
I have soft tumor behind my heart (inoperable) so I need something systemic to suppress tumor. My docs are all kind of stunned my pain is managed by a glue stick looking applicator for CBD creme that I apply over vascular areas such as my wrists or top of feet.
In the surviving months I've been blessed with, I've assisted several friends to back off long life-debilitating addiction to the synthetic opioids from firefighting trauma and disability. It's a life changer if patients can get off personality changing narcotics. How do I know?
Kaiser-Permanente kindly allowed me to get chemo in GA Jan 2014 so we could manage a tough family transition occurring there. We bought a small RV so I could avoid crowds of people. I had to go back on narcs to leave the cannabis legal Colorado for three weeks. Upon return, Tracy lovingly to me and herself, shared she could no longer travel with me in close quarters on narcs. I get snarly, impatient, intolerant, and Tracy catches the brunt. We are now limited to Colorado travel unless I can get to a legal state within two days (hard pound to CA or WA). We remove all canna items for illegal states as neighboring states have increased enforcement targeting CO plates.
- What are my take-aways?
- We MUST change our diet and what Dr Barnard called the "Terrain".
- Hospice EARLY so they can embrace family and coach end-of-life issues healthy for everyone to examine.
- There are many cancer victories outside allopathy and the medical/industrial complex. I was unwilling to look at these until I got spit out by the chemo. No treatments are instant AND folks have come back from the brink. It took me a long time to "get here". Patience is necessary with other protocols.
- CANNABIS: if only for non-psychoactive, non side effect pain control IS HIGHLY PREFERENTIAL comparing side effects, efficacy and addiction. Endocannabinoid receptors are separate from opioid receptors. There are no endocannabinoid receptors in the brainstem thus no death from canna unlike alcohol and opioids. Precious few Physicians are trained in the endocannabinoid System and full plant extract manipulation. 15% of med schools currently mention the topic. PubMed has over 2000 articles. My hunch is future patients will use oil prior to immune damage from allopathic medicine chemo/rad/surg and resolve cancer. This is occurring right now including prostate cancer. I was a naysayer on cannabis. I was clearly WRONG.
I'm very grateful to reexamine my life and seek resolution on the tough stuff. My mom and I have found resolution and healing on very early childhood stuff I've let "run me". I include her by Skype with Hospice staffers. My son is magnificent living in the shadow of my cancer and his 82nd ABN colleagues with soldiers heart. His resulting meditative outlook leads our family to peace and resolution. I embrace death as another delicious aspect of ongoing life. If one of them should slip over the veil ahead of me I'm at peace given our discussions (But don't nobody rush that!)
SO BY GOD I LOVED TERRY (YanaNOW Founder). He was there for me that "deer in the headlights" day of diagnosis and he's telling me now he's with me yet.
If canna and diet grant me minutes, hours, days, months--I'll act like a guy whose life was spared. I'll update my YanaNOW!
Much love to you all, patients and caregivers. Cancer sucks but cancer's lessons can be spectacular. I "be" with it as often as I can. I let it "be".
[Sadly, we received a message from Eric's wife Tracy informing us that Eric passed away on March 4, 2015].