So It Starts

So It Starts

Dr. Ingham had ordered CT scans of by Lungs and Pelvic area.  I had requested that these be done 'up here' versus my having to drive to Brighton.  I was pleased to only have to go on the other side of town to the Merrimack Valley Holy Family Hospital.

It was a beautiful day.  Sunny and close to 70 degrees.  I arrived at 11:15 for my appointment at 11:30.  My check-in was easy.  Having been here before, I knew where Radiology was located and got there at 11:20.  I was asked if I had lab work (blood work) in the last three weeks.  I had not.  So I was directed to the lab down the hall.  There were two ahead of me, so I sat and watched The Price Is Right until I was called.  I had to sign-in and my being tall didn't help my penmanship on the sign-in sheet taped to the wall.  When it was my turn the phlebotomist paused and said, "Is there someone here with a name that begins with an 'R'?"  That's me.  I did glance at the sign-in sheet and because of the angle I wrote, it did look like RIJ.  So I gave her my paperwork and we proceeded to the lab.  While she entered info into the computer and printed out some labels, I prepared myself by rolling up my sleeve. When she walked over, she seemed happy that I was ready.  She was good.  Really no pain and barely a pinch.  I was done.

I arrived back at Radiology.  I was given some paperwork to complete.  By the time I was done, the attendant had taken a break (or lunch) and someone else was covering.  Four people came in after me and they were all taken as I waited, for almost an hour.  All I could think of is my having to leave for lab work made me lose my place.  I wish I knew I had to have that done, I would have come earlier.  Oh well.

By this time nature was calling, but I was afraid to leave in case I'd lose my place again.  By this time the first attendant had returned and saw me standing.  She said, "Oh they haven't called you yet?"  Nope.  But I did ask where the rest room was.  I was instructed to walk down the hall and it would be on my right.  No sooner did I finish and walk out, a technician called my name and asked that I follow her.  Perfect timing.

Entering the CT scan room, I was instructed to hang up my coat, lay on the slab and pull my pants down to my knees.  She was nice enough to give me a blanket since it was chilly in the room. She told me that I would have a stint and would be given and IV of saline and then some dye.  I offered up my same arm used for the blood test and she inserted the needle but soon said  that my 'valve' wasn't working.  [What?  You have valves in your veins?].  I suggested she use the other arm.  By this time another technician arrived and assisted.  She was good.  Barely a pinch and she said the valve was working good.  So she 'flushed' me and I was told that I needed to extend my arms (so they stayed straight and out of scanning chamber).  I was told that I would take a few passes, then they would inject dye and I'd have a few more passes.

I've had scans done before and they may have been a different kind, but each pass only took a few minutes for this.  The machine told me when to take a deep breath, hold, then exhale. After the first round, the technician said that I would feel warm as the dye was injected.  It was a very weird feeling, but not painful.  I made a few more passes and she said, "You're done."

The stints were removed and I was told to get dressed.  She said have a great day.

So the images will be sent to Dr. Ingham and I have a tele-health appointment scheduled for 11/24 (day before Thanksgiving).  Now the waiting and hoping for a clear path for treatment.

More to come!

Here we go again!

Here we go again!

Dr. Hurley had referred me to a urologist that specializes in bladder cancer.  I had an appointment today at St Elizabeth's in Brighton with Dr. Matthew Ingham.

My ride into Brighton on this first Monday after the time change was fairly uneventful (thankfully).  I gave myself an hour and a half for travel.  I arrived at the hospital parking garage about a half hour before my appointment.  My luck, the garage attendant was setting up 'garage full' sign right in front of my car as I waited to enter.  I asked where should I park.  He instructed me to go to valet parking.  I'm not a fan.  So suggested that I wait until someone left the garage.  He thought it was a good idea so he asked that I move off to the side.  Other people behind me weren't too happy and some heated exchanges took place, as if the attendant had anything to do with the garage being filled.  One guy, recklessly back his truck up almost hitting my car then left rubber as he exited. I had pulled over so  I had clear sight of the attendant and could make eye contact when a vehicle left.

Not too long after, a car was exiting.  I got the visual cue to proceed.  Not knowing how things worked and hopeful that no one else would beat me to the opportunity, I drove up to the gate and was hoping he would lift it.  He walked up to me and said I needed to take a ticket so I could pay upon exit.  I told him I'm not with it today, and he was very pleasant and said no worries.  He pressed the button and gave me the ticket.  I'm in!   I went slowly looking for that elusive spot which happened to be on the top level.  I still had time.

I figured out which building I needed visit.  The directory in the lobby had the doctor's name and which floor/room he was in.  I rode the elevator to the third floor and looked for 303.  I couldn't find it, so I walked around looking for 303.  There was was no order, but I did find the room.  I checked in and was given my obligatory SAT's to complete.  I just started when my name was called.  I was directed to an examination room where the medical professional took my vitals.  She was having trouble with the blood pressure cuff and tried a few times.  She said she would return with another.  [She never did].

I sat and continued to complete my paper work and a doctor (didn't get the name). [Masks make communication challenging].  He asked some questions about my medical history, as well as family members.  After harvesting the information, he said Dr. Ingham would be in to talk to me.

Not too long after, Dr Ingham arrived.  After my health history monologue, he added that he did see some imaging (and apparently Dr. Hurley captured some during my TURBT procedure).  He did say that he needed more data and images. Because of how and where the cancer is.  He said he needed more data to define the best course of action.  Like Dr Hurley, he sketched out my condition and described the three possible action plans, but he did not commit to any and won't until he has more data. He wrote in my care summary the following:  [my comments and understanding will be in brackets]

"I am going to refer this patient down to Saint Elizabeth's Hospital for urologic consult concerning this diverticular bladder cancer. [The 'pouch' that has grown out from the bladder is very similar to diverticulitis in that it's not a normal structure and many times things grow there.  In my case cancerous tumors.] The fact that he has high-grade cancer invading the lamina propria in a diverticulum is somewhat concerning. [ In the doctor's sketch he indicated that there are layers around the bladder wall, scaffolding; muscle and fat.  Without imaging he is not sure of which layers may be with the pouch.]There is no muscularis propria behind this so I am unsure of whether or not how invasive this is. [ There is concern that the cancer may have spread.] Whether or not he can get away with may be a repeat fulguration with BCG instillation versus a diverticulectomy versus a radical cystectomy is difficult to say at this point and I need confirmation from of other urologist expert in this disease." 

That last statement sums up the three possible plans of action.  The repeated fulguration with BCG, pertains to the scraping, cauterizing and 'chemo-like' medicine.  Diverticlectomy is the removal of that bulge.  Radical cystectomy is complete bladder removal. 

There was a discussion about life altering radical cystectomy and the need for an ostomy bag.  The most common (based on my age) is creating an outlet for urine that empties into a bag.  At a high level, a piece of the small intestine is fashioned as a new drain that attached to a urine bag.  I also discussed the possibility of a neo bladder.  Although being an option, it's generally used on young men.  But he did say it's not off the table.

Next Steps

He wants imaging done (CT scans of plevic area and the lungs).  I asked why the lungs?  He said that if the cancer spreads, it's most likely to go there.  [HOLY SHIT!]

I asked if these imagings can be done locally, to which he said, yes.  I was informed later that they will be done at Holy Family.  [Waiting to hear back.]  He said that if I do need an MRI, based on other images, that would need to be done at St. E's.

No new news, but a better understanding of what's going on.  

More to come!

Well this was not what I had planned!

Well this was not what I had planned!

Had my post op follow-up with Dr. Hurley.  I had a number of things on my mind, the first being the results of the pathology and a new development 'down there'.  Since I had my catheter removed Wednesday, I had passed some clots (normal), then all of a sudden my stream was reduced.  Can still go, but a trickle compared to the fire hose effect I was used to.  I was hoping he would say, it will clear up.

Arrived at the Salem NH office on time and was the first patient of the day.  After check in, I was called and instructed to enter the examination room.  "The doctor will be right with you". I waited and prayed a bit.

Dr Hurley arrived, shock my hand and asked how I was doing.  He then sat down with some paperwork and began by telling me that he was surprised at what he found while inside.  He proceeded to sketch as he spoke.  Apparently, as he drew a circular shape, the mass he saw in the office, he scraped away.  However, (and I hated hearing that conjuncture), as he was 'in there' he discovered that I have an 'outer bladder'.  It seems that a pouch had grown outside of the bladder and was acting as a bladder (extension).  But, when he looked inside, it was 'very messy'.  Meaning there were tumors.

He looked at his paperwork and said the pathology came back as cancerous and because it was found in the outer bladder he used the word aggressive.  (Another word I don't like hearing with the term cancer).  Since the outer bladder does not have the muscle structure that the bladder has, there is a concern that it 'may' have spread.  He mentioned in his 20 years of doing this, he has never seen this condition.  [Lucky or unlucky me].  Because of this he wants me to see a specialist at St Elizabeth's Hospital in Brighton.  He indicated that there are multiple approaches to getting this, but he needs some guidance.  The easiest is to scrape out and monitor.  He also indicated chemo. Another approach would be to remove the outer bladder. And the final approach would be to remove the entire bladder.  None of this I wanted to hear.  

I asked how the outer bladder happened.  He said that it's been that way for a long time and I've had the cancer for a long time.  He said that an obstruction could cause an excessive amount of urine in the bladder and the pressure caused a breech and created a pouch. Hearing this, I added that I've begun to experience an obstruction which restricted my urine output, but I thought it was a clot waiting to pass.  He seemed to think it might be related to the prostate so he indicated that he would call in a prescription to help me 'go'.  Once it's cleared up, I can stop.

So he said he was going to get in touch with St Elizabeth's and schedule a consult.  In the interim, he scheduled a three month follow-up with him.

I'm a luck/unlucky SOB.  Between the breast cancer, AAA and this.  Geesh!

More to come!

Excess Baggage

Excess Baggage

I was able to get some decent sleep last night.  I was given a much larger urine bag to use at night.  Although the nurse gave me a tutorial, it was very difficult to set up.  Apparently it needs gravity to work better and it has to hang from the bottom of the bed.  Given I'm tall I have no foot board, so I rigged up a guitar stand to hang the bag.  The hose wasn't long enough and very thick, so it was insistent on curling, which would lead to excessive tugging.  So I made an executive decision to keep my 'day baggage' connected and just get up a few times in the night.  Since it's uncomfortable, that did not present a problem. I got up three times.  First time (after 2 hours of sleep), there wasn't much output.  The Velcro straps shifted a bit, so I made the adjustments.  Second time after about 3 hours of sleep, there was more output.  The last time, and when I got up, the bag was completely filled.

I received a voice mail from the doctor's office checking in with me.  I called back and reported on my current state and wondered how long I'd need the bag.  She said she'd contact the doctor to find out.  She asked if there was still blood and clots.  Well because of one of my meds the urine is florescent orange.  I saw no clots, but there was a red tinge.  She said the bag isn't removed until there's no blood.  OY VEY!

Later, after drinking coffee, it was time do maintenance.  I really looked and it definitely was more orange and to me, didn't appear to have blood. Drink plenty of fluids ran through my head.

A short time later, I received a call from the doctor's Salem office saying they would be removing the catheter tomorrow!  YAY!!.  I have an appointment at 8:30 with one of Dr Hurley's associates.  I can't wait.

I do have a slight sore throat and am a bit hoarse from the tubing, but that will clear up.  It's a gorgeous day, so I'm hoping to resume my walking that I could not do yesterday.  First time in years that I missed my walking goal.  I'll take it slow and not push myself, but standing (and moving) appears to have less discomfort than sitting or lying down.

More to come!

Two Bolts

Two Bolts

When I was younger with 7 siblings, my parents knew many ways to stretch a buck.  My father was a jack of all trades, but learned to create and fix things through trial and error from the school of hard knocks.  One of his acquired skills was auto repair.  Many kids meant many cars and we all know cars break down.  Whenever a car needed routine repair or maintenance, he would do it himself.  Over the years he amassed many types of specialized tools to do these repairs.  Of course, back then engines weren't as high tech as today's cars, there was room to maneuver within a slant 6 or V8.  So swapping out an alternator from a late model car from the local junk yard was his operational model.  The knowledge he acquired over the years was astounding.  Early on he provided hands-on (or stand back and watch) training.  Thanks to him, I could swap out, radiators, starters, celluloid switches, patch tires, use bond,o etc. However, he would often run into a job he thought simple and would say, "It's just two bolts".  But the job would take many hours and sometimes days. So in my family, the term: two bolts equates to something not so simple.

Day Surgery

After many pre-op calls from the hospital, surgical team, anesthesiologist, my arrival time was placed at 6:30 AM.  I figured since I was fasting, I didn't need time to drink coffee so took my shower the night before.  I decided to get up at 5:30AM.  My younger sister (who is an angel), offered to pick me up at 6AM and drive me to Holy Family in Methuen. Being anxious, I woke up at 3:30AM.  I tried to get back to sleep, but my mind was now awake.  Then it came to me that I set the alarm for 5:55 not 5:30.  I was startled and immediately turned on the light and re-set the alarm.  By this time I was even more awake, but I managed to cat nap until the alarm went off. [It sure is dark this time of year at 5:30]

My sister, Leslie arrived and we scooted off to Methuen.  Traffic was busy but moving.  Of course the drivers were up to their bad driving antics, but we made it.  Due to COVID I had to be dropped off.  After thanking her, I proceeded to the Hospital.  

The check-in process was very stream lined due to being a virtual ghost town.  I just had the obligatory questions and was given an 'OK to enter' sticker. I proceeded to Day Surgery and checked in.  There were three people in the waiting room.  My name was called.  My nurse was very pleasant and task driven.  I was shown to bay #3 and was instructed to remove all my clothes, place them in patient belonging bags and don the hospital johnnie. She went through all the paperwork and completed forms. She drew some blood and placed my IV stint and hooked me up the saline solution.  She then told me the order of appearance for my medical team then left but was replaced by one of my doctors of anesthesiology.  He went through his script and described how they work in teams and another anesthetist would be meeting with me.  Upon his leaving another nurse arrived.  She hooked me up to a vitals machine. A few more arrived and fitted me with electrode stickers.  The second anesthesiologist   arrived with yet another team member.  And they asked many of the same questions then walked me through the program.  Doctor Hurley arrived, went through the paperwork, signed off on some things then told me everything will be fine and my being the first patient of the day meant my procedure would start as scheduled.  He patted my shoulder then left. One by one a team of six cam and I was wheeled into operating room 5.  I was introduced to two more nurses and scooted onto the operating table. Immediately they all began getting me ready.  One of the anesthetists placed an oxygen make on me and said that I would begin to feel drowsy.  By the time she finished saying that I was out.

Recovery Room

I came consciousness at about 10:30 in the post op recovery room.  Feeling out of it, I did have some pain.  The nurse offered some pain meds.  Yes, please! She said the catheter will feel uncomfortable.  Oh, did it ever. Meds did kick in and it made it tolerable.  I was provided with some water and crackers and was told I would be moved back to where I started in about an hour once my vitals were normal.  

I had a quick visit by Doctor Hurley who ominously said, "It went well.  It was bigger than I had thought.  I hope I got it all.  I don't want you to have anymore bleeding". I guess I'll need a better discussion about this at my next visit. Doctor Moore stopped by to say hi.  He performed my breast surgery in 2015.

I was having stabbing pains in my upper left back and when I took deep breaths.  I tried to get into a comfortable position but I would set off the machine.  Apparently the position that felt the best crimped hoses. The pain got so bad that I got the attention of a few nurses.  No one seemed to know why I had this, but to be sure it wasn't my heart, they gave me an EKG.  A host of nurses descended and got me hooked up.  I purposely took deep breaths hoping the pain would register on the results.  But, the EKG came back normal! The nurse remained and continued to trouble-shoot to determine the cause (something external?), however as she was talking, I began to feel faint.  The vitals showed that my blood pressure was very low.  My vision began to 'grey out' and I felt myself fainting.  A bunch of nurses again descended and I could hear them say 'He's cold to the touch".  It seemed that all were placing their hands on my arms to either feel for themselves or provide me with heat.  Their heat felt nice.  It was decided that my pressure be taken on my other arm.  This reading was still low.  Not long after, I was beginning to feel 'normal' again.  The nurse said my color was back and my readings were normal. I was given some graham crackers and apple juice and remained until the readings were stable.  Yet another mystery.

Bon Voyage

I think it was close to 1:30 at this point so I was given the green light to advance to GO but NOT collect $200. I was wheeled to bay 3 and collected my personal belongings. The nurse explained that I had a Foley catheter and provided a detailed demonstration on how to use it, drain it, wear it and swap it over to a night-time collection bag.  She mentioned that the doctor had called in prescriptions for me and his office would schedule a follow-up to have the catheter removed.  She also provided instruction on what to do when things aren't right. One remedy being a visit to the ER. I was instructed to dress and take the night-time kit and urinal with me. My sister had been called and was already waiting outside for nearly 2 hours.  The nurse said she called 'transport', which meant someone would wheel me out in a wheel chair.  Got outside and the weather was gorgeous.  One of the first things Leslie said was, 'Two bolts".

Drugs Ready For Pick-up

Leslie suggested that I contact the drug store to see if my script was ready for pick up.  They were. So, she drove me there.  When I looked at the drugs, I saw that I was prescribed Ciprofloxasin.  I don't feel comfortable taking that.  I had it swapped out before.  So after I got home I contacted the doctors office and requested an alternative.  Not long after I was notified that a new script was ready for pick-up.  I was bad and drove the mile to the drug store.  I took a few back streets and was very cautious ;-)

I did manage to eat something and took a 4 hour nap.  Not looking forward to pee bag maneuvers tonight.  I hope they take this thing out soon.

More to come!

 

More tests

More tests

Had my pre-screening (pre-op)  for my procedure on the 13th.  I was instructed to visit the lab at Holy Family, Methuen for blood and urine work.  

Fairly non-eventful, but this pandemic has really changed how things proceed.  Upon entering the hospital, I traveled a maze to the first check point.  After given the interrogation (on covid), I was given a sticker that indicated I passed.  Next stop was registration.  Because I had my pre-screen via the phone I had no paperwork.  The representative didn't seem pleased, so I produced ID and she pulled up my file.  After a bit, I was cleared to continue to the lab.

I walked to the ground floor and easily found the lab.  There was one person waiting in the room and the guy at the check in window asked me to wait until he was finished doing whatever he was doing.  Finally, I was given the go ahead.  I mentioned that my paperwork was in the "rec" folder.  He pulled it out and asked my name and DOB.  He gave me paperwork and asked me to have a seat.

It wasn't long before the phlebotomist called me in.  After verifying my identity, she took a vial of blood.  Hardly any pain or discomfort and quick.  She then asked if I could provide a urine sample.  To which I said yes.  I was given a 'kit' and directed to the men's room where I completed my task.  I left my sample and was on my way.  Easy peasy.

More to come!

What now?

What now?

I had my second post-op follow-up with Dr. Song today at Mass Eye & Ear, Waltham.  It was a crisp Autumn day and traffic was moving right along so I arrived right when I had planned.  The parking lot was full, but luckily for me someone was leaving.  So I pulled right in after they left.

Upon entering the waiting room, I noticed it was packed. Interesting, I thought.  After check in, I was told to have a seat, but there was none to be had.  I stood next to the wall, and once again, someone got up.  I quickly scooted into the seat.  As I observed what was going on, it appeared that they were doing lasik  procedures that day and there were a number of younger folks waiting their turn.  Each was with a parent.  I saw two doctors churning out the patients.  Each stopped by and explained to the parent, what was going to happen and how long it would take. So this explained the full parking lot.

I was finally called and the technician gave me the first eye test.  Upon completing that, I was asked to follow, Dianna to an examination room.  I once again had a barrage of eye tests.  I had mentioned that it was very busy.  She said that they were having surgeries today, but not for cataracts, as I had.  Those were performed at a surgical site.  Dianna completed her test and I was instructed to wait until the doctor was ready to see me.  By this time the waiting room had mostly cleared out. Not long after I was called.

I was brought to an examination room and told Dr. Song would be with me shortly.  It wasn't long before he showed up.  After exchanging pleasantries and asking how I was doing, he reviewed my test results and said he wanted to perform some additional tests.  He gave me more drops and arranged his machine to examine my eyes.  He did say the my left eye (one that had the recent surgery) was doing OK, but my right eye had a high reading for pressure.  "My right?", I said.  He said yes. What now? I thought.

He explained that my corneas are very thin and pressure was building up in my right eye, but my left eye was fine.  He once again looked into my eyes with his light and exclaimed that the 'drainage structures' appeared fine.  He said at this time there was nothing to worry about, but he wanted to monitor it.  He added that this pressure, if not corrected (either on it's own or with drops) could lead to glaucoma and in the worst case scenario, loss of vision.  [Lovely].

I asked if it's anything I did, or diet, or whatever?  I did have something salty the other day.  He chuckled and said, it has nothing to do with high blood pressure.  He said he wanted me to finish my drops (a few more days) and he will see in a few months.  He gave me paperwork and wished me a good day.

At check out, I was given a January 2022 appointment.  I sure hope the weather cooperates.

More to come!