De-Catheterized

Foley CatheterMy urologist removed my foley catheter today.  This is a huge milestone.  This thing has been a prison sentence.  Like being tethered to myself with a ball and chain.  My urethra has only been penetrated by this catheter for eight days, but during that time this device has been responsible for a great deal of my discomfort and emotional state.  I probably don’t remember all my experiences, but I’ll relate what comes to mind.

Starting Monday when I had my first BM, that event also caused me to urinate outside of the catheter.  That burned my meatus (pronounced “me 8 us”).  A lot.  I learned I could mitigate the pain by physically coaxing the urine out of my penis with a pinching action.  Also, a vacuum is often created in the bag, which acts as a plug to stop the flow via the tube.  I have to blow air into it as a remedy.  To do that, I have to carefully place my lips on a recently sterilized section of tubing.  There’s a certain similarity to siphoning gas, not that I’ve ever siphoned gas.  Another hint, I learned that it’s better to string the tubing for the large foley bag down through my pant leg, like I do for the smaller bag, rather than have the tubing come out through the top of my waist when I sleep at night.  The tubing is long enough that I can still carry the bag in my hand.

I have to switch to the larger bag every night, which means cleaning the smaller bag, because the smaller bag can’t go more than two hours without the need for draining.  I drain the larger bag a couple of times in the middle of the night anyway, because it’s not really possible to sleep well wearing a foley catheter to bed.  Likewise, more cleaning when I switch back to the smaller bag in the morning.  It’s a fifteen minute routine I didn’t use to have – twice a day.  Double that to include the time it takes to clean my wounds.  I use a spray bottle of bleach and rinse with warm water.  This is the same procedure I use on my Camelbak reservoirs.

My abdomen suddenly improved dramatically Tuesday.  Apparently much of the gas filling my intestines cleared.  With this pain now largely gone, the discomfort from my catheter gained focus.  I think the pain was there all along, but the feeling was lost in all the noise from other body parts.  The shaft and meatus of my penis have been constantly sore.  This makes sleeping at night difficult.  Then there is an emotional impact from wearing a catheter.  I don’t know what could be more disheartening.  Adapting the smaller bag that straps onto my leg helped dry my damp mood significantly.  I went to a gathering Monday with my friends to watch the NCAA basketball final.  This was my first real social experience wearing my catheter.  I have such good friends, and old enough that they’ve experienced their fair share of medical history, that the evening was good.  It felt great to be out with friends.  I talked too much which made me short of breath and fatigued, to where I needed a drive home.  Otherwise, I was happy to get out.  I had to use the restroom once to drain my foley catheter.  Socially awkward.

cystogrpahyI arrived at Out Patient Services in the Longmont United Hospital Wednesday morning at 8:30am to receive a cystogram.  My tech’s name was Dave and the radiologist was Dr. Wall.  They were both personable and good about setting my expectations.  They had me lay supine on a table.  They filled my bladder with contrast, the term they use for a liquid that registers on the fuoroscope.  They leveraged my catheter for this with a reverse flow from the tube into my bladder.  They said I would feel discomfort.  I felt like I had a full bladder and needed to urinate, but this was not a painful procedure.  It took less than 30 minutes.

I learned from this procedure that in order to try peeing outside of the catheter, I need to push on my tubing to lift the balloon off the bottom of my bladder.  It’s normal position blocks the flow of urine other than through the catheter.  I was able to see this visually on the fluoroscope monitor and I was able to do this technique later at home when I felt the need to.  Dr. Wall told me it appeared my bladder was not leaking and I could expect for the catheter to be removed on Thursday.

Bard CatheterMy catheter is manufactured by Bard Medical.  The component pictured here with the balloon and small opening is the length of the catheter that sits inside my bladder.  The other end is taped to my thigh.  The Y-split to the little red endpoint is used to inflate the balloon for installation and deflate it for removal.  I was sent home from the hospital with multiple pairs of both the small and larger bags, straps and various parts.  With my expertise cleaning and caring for Camelbaks, I never needed to replace my originals.  I am disappointed with the constant vacuum problem that would trap urine in the tube before draining into the bag.  I emailed their support site for advice and received a response from someone with a PhD in their title the same day.  The response described the patch feature in the larger bag intended to mitigate vapor traps, or at least provide material to pull on in order to break the trap.  Unfortunately the smaller bag does not have this feature.

AZOKaren visited the Urologist with me this morning for the foley catheter removal.  I didn’t know 100% that it would be removed, although the radiologist did set my expectations for this the previous day.  Dr. Webster first reviewed the biopsies from my surgery.  The three prostate carcinomas were Gleason score 6.  Nothing was found on my lymph nodes.  I was able to ask for a prescription of AZO – or at least I think that’s what I’m getting – to address the extreme burning in my meatus that is expected for the next couple of days.  Dr. Webster further reviewed my next steps to address urinary issues and erectile dysfunction.  I’ll meet with a physical therapist as soon as I can schedule a meeting, to address urinary function.  I won’t begin to work on ED for another month.  Karen left me alone for the actual procedure.  Unexpectedly, so did my urologist.

Nurse Brittany and her new intern Abigail performed the necessary steps to remove my foley catheter.  She had me lay back on a table with my upper body propped erect by pillows.  Intern Abigail observed and took notes as Nurse Brittany explained each task.  She first placed a tray between my legs to catch urine.  Then she removed my leg bag and its section of tubing, and discarded it in the trash.  Next she deflated the balloon that anchors the catheter in my bladder.  Nurse Brittany then injected three or four syringes of water into my bladder via the catheter.  She kept going until I told her to stop.  Last step was to pull the catheter out.  From the effort Nurse Brittany expended prior to the big tug, advising me to relax, I was braced for some pain.  I also expected this to be too quick to hurt for long.  In the time it took her to reel in that line, I could have read Moby Dick.  A tougher guy might describe this as discomfort.  I’m categorizing it as epic prolonged pain.  The final task was mine to expel all the water from my bladder into the toilet, which I was allowed to perform without an audience.  Lastly, Nurse Brittany scanned my bladder with some ultrasound device to confirm I did indeed empty my bladder.

We arrived home to a shipment on the front porch of Amanas smoked ham and assorted sausages and cheeses dispatched by my older sister Sandy in Marion, Iowa.  I made a ham and cheese sandwich from it, on Rudi’s Spelt Ancient Grain bread, and am eating some again now as I write this blog.  Before I ate lunch, I went for a walk.  A real walk.  Previously, with my catheter, my longest walk was only a half mile.  Typically divided in two segments by a short rest period at the mailboxes or coffee shop.  Shoot, until Tuesday, I couldn’t even actually walk.  It was more of a shuffle.  Understand, there is not much more you can do with a catheter tethered to your bladder.  It would only take a quarter mile for blood to start streaming through my catheter.  Not enough to be concerned, but certainly enough to make me pause.

Today, I wore my Garmin to record a three mile walk.  I averaged a 17:30 pace alongside the Left Hand Creek.  Considering my typical walking pace is 15 minute miles, and the average walking pace is closer to 20 minute miles, I’m happy with today’s pace.  The weather was full sun, mild breeze and 51°.  I wore walking shorts.  You have no idea how proud I was to be wearing shorts.  Make no mistake, wearing a catheter is completely demoralizing.  Not the best scenario at a time when maintaining a positive outlook is paramount.  I felt good about my shorts.  I felt good about my pace.  I wasn’t very dizzy or breathless afterward, and I burned 300 calories – my daily average intake on that clear liquid diet.  What a difference two days and catheter removal can make.

This completes my surgery phase.  I consider myself to be starting the real recovery phase.  The blog posts will decrease in volume, as they already have.  I suspect I’ll recount my medical professional visits.  First one should be with Physical Therapy.  Then a visit with my doctor, or at least his nurse, for PSA blood tests, followed by a urology visit in a month.  To sum up the last week, surgery was tougher than I expected.  Not much actual pain but extreme discomfort, fatigue, and an emotional roller coaster for the eight days I had to endure attachment to that dispiriting catheter.  I’m set now for Jen’s breakfast party Saturday.

Cystoscopy

cystoscopeI was nervous over this procedure.  Much more so than over my pending surgery.  Because it’s just not right.  I think of the urethra as uni-directional.  Exit only.  I could go on but I shouldn’t have to.  No one reading this blog should be comfortable with this procedure.  Naturally I read the entire Internet searching for real stories.  And I talked to one person, my father-in-law, who underwent the cystoscopy.  But he had the rigid scope where they put you under like they do for a colonoscopy.  My cystoscopy would be the flexible type where they only apply local anesthesia, which I imagined would be a couple of needle shots to my penis.

I need this penis torture to prepare for my prostatectomy.  My surgeon will leverage this scope to view how my prostate attaches to my bladder.  The scope enters the bladder and then looks back on the wall connected to the prostate.  It’s important to understand if the shape is concave, convex, or flat in order to properly cut it out.  I don’t know of all the repercussions, but can imagine leaving in cancerous tissue or making too large a hole.  Apparently this tool is also used to remove gall stones and for other non-cancerous reasons.  This is performed on women as well but I think that procedure goes by another name.

I went in Tuesday afternoon, March 18th, for blood work and an EKG, related to my surgery.  The cystoscopy was Friday morning on the 21st.  My nurse’s name is Brittany and she looks amazingly similar to my niece Cari.  She’s the one who won’t let two minutes go by without requesting a urine sample.  Brittany had me lay down for this, with my head and shoulders propped up to view the video.  I was naked below the waist and she covered me with a sterile drape (paper blanket) with a hole around my penis.  She cleaned the area with some pink anti-septic.  Before I undressed, she gave me an antibiotic to take afterward.  She then used a needleless syringe to inject a fluid into my urethra that would numb it for the procedure.  I expected shots and was greatly comforted by this.  It was still uncomfortable.  It burned slightly and I felt like I was peeing, although I wasn’t.  She added a clip afterward to hold in the liquid.  She then left me to relax and become comfortably numb before Dr. Webster would join me.

Dr. Webster took only two minutes to perform the procedure.  He talked to me explaining everything and I was able to watch the visual on a monitor.  You can watch it at this link since I recorded it with my iPhone.  I didn’t feel the initial entry at all.  Pushing past my sphincter was extremely uncomfortable.  Doctors like to say you will feel some pressure as opposed to calling it pain.  Maybe that’s fair.  It certainly is not a sharp pain, but there is nothing that feels good about “some pressure”.  The visual though, with him explaining everything to me, was enough distraction to quickly get over the discomfort.

Dr. Webster met with me afterward to set my expectations for the prostatectomy.  Karen sat in with us to listen.  I will have four or five insertions through my abdomen.  The largest hole will be above my belly button through which the prostate will be extracted.  The other points of ingress will be for various tools.  I’ll stay overnight and can expect to be released the next morning.  Now that I am home, I’ve had to pee several times.  It stings and there is noticeable blood in my urine.  Otherwise I’m fine.  If I can get enough work done, I intend to go for a run later this afternoon.

Diagnosis

gloved handThis story begins with the blood work a gentleman is obliged to undertake when he reaches fifty years of age.  I pushed the boundary a tad by waiting until I was fifty-one.  I had been waiting for the general acceptance of a blood test that would replace the dreaded colonoscopy.  About the same time however the efficacy of a promising blood test was brought into question by the medical establishment.  I would soon learn there are far worse “oscopies” to fear.

I visited Dr. Tusek (he has an office in my neighborhood) on August 20th, 2013 for my first blood work, along with my first digital rectal exam.  Another thing I had been hoping to avoid with the advent of some new medical breakthrough.  I now understand the tactile benefits of the finger probe.  The surface of the prostate should be smooth to the touch.  A seasoned doctor can easily feel small bumps which indicate cancer.  I checked out fine and scheduled my colonoscopy.  I completed that procedure, with great results, before returning to Dr. Tusek to review my blood test results.  Drinking the prep solution the day before the colonoscopy truly is the worse component to that experience.  Especially considering they drug you with something that erases your memory of the event.

I walked away from my review of the two dozen or so serum and protein test results thinking my biggest concern was a vitamin D deficiency.  Dr. Tusek’s recommendation for 10,000 IUs seemed excessive considering you can’t buy Vitamin D over the counter in capsules larger than 5000 IUs.  He was also concerned about my PSA results.  I scored a 4.1.  The acceptable range is 0.0 to 4.0.  Dr. Tusek explained to me I could schedule a prostate biopsy, but that such biopsies aren’t trivial and this particular measure of proteins in my blood could be skewed by a long run I did the day before.  I scheduled a do-over for December and didn’t think much of it.  Oh, and my testosterone results were on the high end of the established range.  Booya!

I took the second test on December 20th, and reviewed the results with Dr. Tusek on January 7th, 2014.  This PSA reading was 4.4.  Not only is this higher than my initial score but it indicates an undesirable rate of change – PSA Velocity.  I scheduled a consultative visit with my Urologist for January 10th – Friday of the same week.  Dr. Webster, of Alpine Urology in Longmont, used this session to set my expectations for the biopsy.  Oh, and his nurse collected a urine sample.  You will never leave the office of a bonafide Urologist without also leaving behind a urine sample.  Even if you are only there to pay a bill.  Dr. Webster was thorough, meaning yet another digital rectal exam.  He also completely advised me of the potential side effects to biopsies and why some men don’t risk the procedure.  I scheduled my prostate biopsy for the following week on January 17th.

I’ve written on some of these earlier events in my running blog.  This link will filter those stories under the “medical files” category.  Suffice it to say, the biopsy is not painful, but it is extremely uncomfortable.  I couldn’t run the next day but did snowshoe on Sunday.  The blood in my urine cleared up by the next day.  As far as I know I might still have blood in my semen.  I’m told it takes about twenty ejaculations to fully clear.

I reviewed the biopsy results with Dr. Webster on January 23rd, wherein I learned I have an early-stage, slow-growth cancer.  Of the twelve biopsies, two show carcinoma and two are suspicious.  The two carcinomas are clinical stage T1c which implies early stage, and both have a Gleason score of 6 which indicates slow growth.  Dr. Webster reviewed my treatment options which include active monitoring, radiation and surgery.  Some sort of cryo-freezing procedure is technically an option too but he didn’t support it.

Active monitoring is an option with the Gleason score of 6.  But it would require quarterly digital rectal exams and annual biopsies.  I can’t live like that and did not consider it a viable course of action for myself.  There are two forms of radiation treatment.  They have formal names but I’m not a doctor.  One is internal with beads or seeds.  I’ve also heard the term pellets.  These radioactive seeds are inserted into the cancerous prostate tissue and left there to rot.  The other form of radiation treatment is external and administered with a death ray gun.  This requires five or six weeks of daily therapies.  Like I have that kind of time.  The final option is of course surgery to remove the prostate.  A prostatectomy.

Dr. Webster ended the session by suggesting I seek a second opinion.  He also made it clear, as a surgeon, he advises surgery.  We met again for another consultative visit on February 7th, after I had some time to think about my options.  This did not give me time though for a second opinion so I refrained from making a commitment to surgery.  He retaliated by giving me my 3rd digital rectal exam.  I got in some good questions though to further establish my expectations on post surgery recovery.  I was more knowledgeable after having talked to two others with prostate cancer, along with my father-in-law who is a retired medical doctor.

Talking to others made me considerably more informed.  I spoke to an older friend who had external radiation therapy.  The cancer disappeared for five years and then returned much more aggressive.  He now needs hormone therapy which is essentially chemo.  I learned from him, and also the doctor from whom I eventually get a second opinion, that certain initial treatments can rule out specific subsequent treatments.  I further learned of the experience of another friend, now deceased, who had the internal radiation.  He had good results but died soon after from a heart ailment.  The best discussion was from a total stranger, a friend of a friend, who underwent the prostatectomy.  He is my age and in similar health as a serious recreational, masters class athlete.  He was clearly disappointed that he still has Erectile Dysfunction a full year later – for which he is attending physical therapy.  He was able to return to exercise after three months.  I’m so very grateful to this guy, whom I totally cold-called, for sharing his experience with me.  If anyone has questions for me, this blog takes comments anonymously.

I finally received my second opinion on February 28th, 2014 by Dr. Ronald Rodriguez from the UT Health & Sciences Center in San Antonio, Texas.  I mentioned my father-in-law is a retired endocrinologist.  He suggested this urology oncology center.  I didn’t know what I needed exactly in terms of a second opinion.  I had no reason to doubt my original diagnosis and was fairly comfortable already with my decision to elect surgery.  This is due diligence though. Talking to Dr. Rodriguez was simply amazing.  He gave me so much more information than I’d learned to date from all the online discovery and interviews of previous cancer patients.  He told me of interesting correlations.  Most importantly, he re-evaluated my biopsies.  He ordered them from the lab that performed them – AmeriPath.  He determined one of my suspicious biopsies was in fact another T1c carcinoma with a Gleason score of 6.  And that one of my carcinomas was actually a Gleason score of 7.  Apparently cancer scoring is a subjective art.

Dr. Rodriguez explained how this changes my treatment options.  Active monitoring is no longer an option with Gleason 7.  And I forget why but he advised against external radiation.  Plus he advised against internal radiation suggesting certain techniques would not work well for one of my carcinomas based on its location.  Essentially he confirmed my choice for surgery.  He did downplay the apparent advantages of robotic surgery.  He explained how manual surgery provides a tactile edge over the robotic visual superiority in terms of completely removing hard to reach cancers that are growing into other areas.  In his words, robotics have a higher rate of positive margin.  But robotics lower the bar allowing more surgeons to perform more operations beyond the confines of the larger medical facilities.  He suggested my surgeon should have performed a minimum of 50 robotic surgeries, but also supported my preference to use my Urologist over some hired gun.  The benefit being able to maintain an ongoing dialog with my surgeon since he is also my Urologist.  As I got up to leave he conducted my fourth digital rectal exam, with a hernia inspection for good measure.

I then scheduled my prostatectomy for April 2nd.  I hate to admit this but I took my work schedule into consideration.  I have a project with a key date for deliverables due at the end of March.  My surgery will be proceeded by a cystoscopy (AKA medieval penis torture) on March 21.  Looking forward to that.