Feeling Thankful

Feeling Thankful

I received a call at 4PM from Dr. Ingham's office just verifying that I would be available and to ensure that my insurance or other things haven't changed.  I was told that the doctor would call me after he was done with his in-person patient.

 

At 4:20 Dr. Ingham called.  I was all set for him with pen and paper to take notes. He got right into it after thanking me for having the scans done (up my way).  

He said:

- Scan of lungs look normal.  No masses or enlarged lymph nodes were seen.

- Scan of abdominal and pelvic area showed no metastatic growth.  (Meaning there is no sign of cancer spreading). No lesions were found in the kidney.  The drainage portion looked fine (it shares some of the cells of the bladder). The diverticulum (the outer pouch where the cancer is) looked less prominent than what the ultrasound showed. He was concerned with some thickening of the wall, but he indicated that sometimes it's not that clear with these scans.

The scans did show some cysts in the kidney, but he said not to worry about that. He did indicate that my aorta was slightly enlarged and suggested I let my vascular surgeon know.  [I know after my AAA repair, the sac was enlarged and was slowly beginning to shrink.  I have an appointment in a few months.  I'll mention it then.] Also, he said I have a hiatal hernia.  I had mentioned that I had a discussion with my primary care physician once I noticed this in my chart.  Dr. Ingham said it may be related to my GERD (reflux). I have a wellness appointment in a few months, I'll mention that.

He was, however,  concerned with a few things, and wants me to have an MRI.  After a review, he did indicate the need for another cystoscopy so he can have a better view of the anatomy.  From his latest observation the opening of the diverticulum is very close to the urator.  The proximity will define the surgery I'll be having.

Both the MRI and Cystoscopy are out patient.  However, the cystoscopy will require my being in the operating room.  I'm waiting for his office to contact me on scheduling.

More to come!

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!