Houston, We Have A Problem!

Since my last post a few things have transpired.  

I did provide blood samples for my genetic cancer screening panel.  I received a follow-up call yesterday (12/28) indicating that the results were back.  According to the results, I had no mutations that would indicate a proclivity to cancer or the cancers within my hereditary tree.  Interesting.  However, there was one gene that had an uncertain result.  According to the caller, this gene is unknown at this time so the uncertain result will be treated as 'negative' until more science/data is available.  As a reference:

WHAT ARE THE POSSIBLE RESULTS OF GENETIC TESTING?

1. Positive Result (pathogenic or likely pathogenic variant): An alteration is found that is
harmful to the gene. You were born with an increased chance of developing certain
types of cancer in your lifetime, with specific risks based on the particular gene
involved.

2. Negative Result: No harmful alteration is found

a. Uninformative negative result: No alteration is found in you and an alteration has
NOT previously been found in another family member. You may still have an
inherited risk to develop cancer because of an alteration that was not detected in
the gene(s) being tested, OR in another gene not analyzed in this test. However,
most cancer is not due to inherited risk. Cancer screening recommendations can
be made based on your personal and family history.
b. True negative result: No alteration is found in you, but an alteration was found in
another family member. If you do not have the alteration that is in your family,
then you likely do not have the same increased cancer risks as family members
who do.

3. Uncertain Result (variant of uncertain/unknown significance or VUS): A difference was found in a gene, but its meaning is unknown. This inconclusive result may or may not be associated with increased cancer risk. Most VUS results are just normal differences in genes and are not associated with an increased risk of cancer. The lab will continue to evaluate this finding, and we will try to keep you updated about the meaning of this result.

So there's that.

Schedules

I did receive my schedule for my next round of BCG treatments, however, I do have a conflict on January 11th.  I have an appointment with Dr Mossanen in Foxborough at 10AM.  I have an appointment at Northeast Urological for BCG at 10:30.  Prior to Christmas, I had called the scheduler to see if I could be moved to Thursday or a late appointment on Wednesday.  I hadn't heard back, but I did talk to the Physician's Assistant today and he said that I could skip a dose if necessary.  They will just tack on the missed dose on at the end.

 Failure to lift off

Well today was to be my first round of BCG.  Last week I provided a urine sample and the test results were normal.  I provided a fresh sample today and Michael (the PA) indicated that there was blood present.  Although it couldn't visibly be seen, the indication was enough to cancel today's induction of the BCG vaccine.  Bummer. I have to wait until, next week now.

More to come!

 

Options, Questions and More Information Needed

I've been in the process of getting information needed for my genetic cancer screening panel.  After a few tele-health sessions, blood samples were needed for the next step.  Since this is being directed by Dana Farber, I had a blood draw today prior to my consultation with Dr. Mehta on my next steps to treating my bladder cancer.

Forgetting the time change and getting darker earlier, I wasn't lucky while headed West to Methuen.  Because of the setting sun and my direction, I was caught in traffic due to the solar slow-down.  Normally a 15 minute ride turned into a half hour.  I arrived five minutes before my appointment and was asked to show my Covid screening pass.  I did do my e-check in, but wasn't asked to complete the questionnaire.  Of course all the other visits to this facility, no one ever asked to see it or the QR code.  Well today they asked and I didn't have it.  Already running late, I was asked to complete the survey/questionnaire.  It didn't take long, but just another annoyance.  I did pass go, but forfeited the $200.  

I arrived at the 3rd floor and checked in.  I received my bracelet and pager type device that they called a locator.  I was given the mandatory SATs, but no writing implement.  I asked and got a miniature golf-like pencil.  I sat down and completed the paperwork, made the same changes as I did the last time.  (Why don't they update?).  I was called in for the blood draw.

My vitals were checked, I was weighed then followed the nurse to the blood draw station.  She was really good.  Very little pain and struck the mother-load on the first try. I told her she should be an instructor.  She seemed to take the compliment with a smile.  After-which, I was brought to an examination room and told to wait for Dr. Mehta. 

It wasn't too long and Dr Mehta arrived.  We talked and discussed what had happened since my last BCG treatment, TURBT and some of the discussion he had with Dr Previte. He asked if Dr Previte discussed options for me (at this point).  I mentioned 3: 1, another round of BCG (also mentioned the interferon that is no longer offered); 2, going elsewhere; 3, having my bladder removed.  I told him that I chose to begin another BCG treatment but get information about other options (immunotherapy).

Dr Mehta said the he agreed that having the bladder removed was a life changing option (although the safest), and stood by my decision to hold off on that.  He went on to say there are two other options.  The first is an immunotherapy (only administered in Boston [he mentioned Brighams]) and the other inter-venous immunotherapy adminsitered at DFCI (Methuen).

The first option I would need to discuss with the urology team in Boston.  He said that it's chemo-like, but it's administered via catheter.  He was unsure of the frequency and possible side effects.  But he said he would send a referral to them and they would reach out to me for consultation.  The second option he referred to a "hail Mary" is administered like chemo.  There are side effects which 'could be' inflamation anywhere from top to bottom: brain; thyroid, lungs, intestines, endocrine system.  He said that 10% of the patients have this and if it's bad then steroids are administered. He said this, in his opinion, would be the last effort prior to bladder removal.

He did say that I do have some basic requirements for immunotherapy: aggressive cancer; stage one, but I would have to have tumors.  According to his conversation with Dr Previte, the tumors were scraped away.  But he said to have the consult with the team to get more information.

So the game plan (at this time) is:

• Continue to the next round of BCG
• Meet with urology team in Boston
• At the end of the treatment (BCG) have a cystocopy.  (Depending on what Boston team says, either remove the tumors or not- if there)
• Follow-up with Dr Mehta in March

I asked if he and Dr Previte update each other.  Dr Mehta said, "We talk a few times a week."   On the way out, I asked what to do with my SATs, Dr Mehta said, "I''ll take them".  But I get the feeling they go into the shredder.

So I await contact from the Boston team and also from Dr Previte on the schedule for the next round of BCG. 

The more you know, the more you don't know. 

Post Script: I received an email that I was referred to a specialist from the Partner's/Brigham Network.  I have the appointment booked for January 11, 2023 with Dr. Matthew Mossanen in Foxborough.  I hope the weather cooperates.

More to come!

December Already

Since my last post, I had endured 6 days of torture with the catheter.  Because surgery (my second TURBT) was performed on Tuesday I would have had the catheter for two days, but the doctor's office was closed for Thanksgiving (Thursday and Friday), so I'd have to wait until Monday to have the catheter removed.  I was tethered to my 'ball and chain' and was on self imposed house confinement.  I just waited out my sentence and meandered from bed to couch trying to get into a comfortable position.  This was nearly impossible, but I soldiered on.  

I ate various 'finds' from my freezer, some dated back to 2019, but it didn't kill me.  My thanksgiving consisted of my own recipe for chicken wings and rice.  Wasn't the regular turkey dinner, but it was good and hit the spot. When Monday came and the catheter was removed, it was such a joy.  A shower, trip to the grocery store, daily walk and lots of cooking (to replenish my freezer food).  Just doing the simple things felt so good.

Good News/Bad News

I had my follow-up with Dr Previte today.  I hardly slept last night worrying about what he would say.  Given the large number of tumors he found and removed, I was fearful that he would say that the cancer had invaded the muscles.

When I met with Dr Previte, after pleasantries, he sat down looking like business and the first thing he said as he shuffled through my file was:

"I have good news and bad news.  The good news is the biopsies indicate that the cancer is still non-invasive muscular (stage one - T1/Ta).  I found one big tumor that was the cause of your bleeding and removed it.  I found 6 other tumors scattered in the bladder and removed those.  I found no cancer in the diverticulum.  The bad news is you are a BCG failure.  

At this point you have three options: 1, do another round of BCG with interferon; 2, seek a different treatment (drug names were mentioned but I didn't get them), however we don't have those.  You'd probably have to go to Lahey.  Or 3, remove the bladder. 

What would I do? I'm 75 so the safest is to remove the bladder.  You are 70.  Once again the safest is to remove the bladder because this cancer can kill you."

I was relieved to hear that the cancer is still stage one.  But was interested in the options.  As we were talking he was looking through things and quickly consulted one of his colleagues about the BCG with interferon.  Apparently, they don't do interferon with BCG treatments since the data didn't support its effectiveness. So the first option was modified to be just another round of BCG (which I I failed first time around). Of course I am still averse to bladder removal until all options are exhausted or if it is no longer stage one. 

We then started talking about the alternative option of immuno-therapy cancer treatment. I had mentioned that Dr Mehta (my oncologist) had discussed an FDA approved treatment for bladder cancer and asked that I reach out to him if the BCG wasn't effective.  Dr Previte immediately called Dr Mehta and had a consult with him.  Although I could only catch a few things in the conversation, Dr Previte said that Dana Farber (Dr Mehta's office) will be in contact with me.

In the interim, we will be scheduling another round of BCG that will start in about a month and will last for 6 weeks with a follow-up cystoscopy/biopsy.  He did ask me to be proactive and call Dr Mehta's office to get that ball rolling.

So at this point, I'm back to square one.  I got home and called Dana Farber and waited for a call back.  By happenstance, I received a newsletter from Dana Farber discussing new treatments for bladder cancer.  A sign?

From the news letter:

Immunotherapy for cancer is a form of treatment that uses the body’s immune system to combat the disease. Today, immunotherapy is being applied to a wide range of cancers, often in combination with other agents, and clinical trials are exploring ways of improving and expanding its effectiveness.

A particularly promising form of immunotherapy, known as immune checkpoint inhibition, uses antibodies to block proteins on cancer cells, such as CTLA4, PD-L1, PD-1, and LAG-3, that impede an immune system attack on the cells. The antibody therapies allow such an attack to proceed.

Immunotherapy has been approved for the treatment of the following cancers:

• Bladder cancer
• Breast cancer
• Cervical cancer
• Colorectal cancer (subset)
• Esophageal cancer
• Head and neck cancer
• Kidney cancer
• Liver cancer
• Lung cancer
• Lymphoma (Hodgkin’s)
• Melanoma
• Merkel cell carcinoma
• Squamous cell carcinoma of the skin

Not all patients with these cancers are eligible for immunotherapy. A variety of factors — the genetic makeup of the tumor cells, how far the cancer has advanced, and whether it has responded to previous treatments, for example — determines if and when it may be used as part of standard treatment.

Bladder cancer

Patients with early-stage, moderate- to high-grade (fairly fast-growing) tumors often receive a vaccine consisting of a weakened, live bacterium called bacillus Calmette-Guérin (BCG). The vaccine reduces the risk of bladder cancer recurrence by sparking an immune attack on the bacteria as well as nearby cancer cells. Several immune checkpoint inhibitors have been approved for patients with advanced bladder cancer including:

•  atezolizumab
•  avelumab
•  durvalumab
•  nivolumab
•  pembrolizumab.

So, my understanding is there are checkpoint inhibitors available.

In The Works

I did receive a call back from Dana Farber.  They will be initiating my consult with Dr Mehta to discuss my options.  They have requested test results, file notes, etc. from Dr Previte's office.  Seeing that Dr Previte already had a discussion with Dr Mehta I don't anticipate any problems.

So, at this point I have a few weeks healing then will start another round of BCG, unless Dr Mehta's options are more viable.

Post Script: Received another call back from Dana Farber (Dr Mehta's office).  I now have a consult scheduled for next Thursday.

 

More to come!

Here We Go Again

Before starting my BCG treatments, Dr Previte told me that after the first round, I would have a cystoscopy and a biopsy to see how the treatment was doing.  If the biopsy indicated bladder cancer (again), I may have to do another round of treatments.

Today I graced the halls of Holy Family in Methuen for my day procedure.  At an ungodly hour, my alarm went off so I could be ready for a ride to the hospital.  Of course I was fasting so no coffee was allowed and I was only allowed to have just enough water to choke down the pills I was allowed to take.  It was dark and cold, plus my brain was in a fog due to the early hour and lack of caffeine. 

Cheryl King and Phil Leavitt arrived right on time to give me a ride.  I apologized for their having to get up so early to cart me to Methuen.  Both were very kind and said they were happy to assist.  I expressed my deep appreciation for their kindness.

I was surprised how much traffic there was for the time of day, but we made good time and got to the hospital a few minutes earlier than my scheduled check in time.  Prior to their leaving we had a game plan in place and if things worked out, they would come back and provide my ride home, we figured mid-day.  I thanked them again and proceeded to check in.

Covid protocols during regular hours, required one to be screened and tagged prior to proceeding. But given the early hour, there was one person on duty, but there was sign that said I had to enter at the ED.  I was was stymied. Couldn't determine was ED was or where it was.  Luckily, the one person on duty saw me and met me in the lobby.  I pointed to the sign with a quizzical look.  "Where is ED," I said.  She responded with, "I told them that sign wasn't helpful especially to the Spanish speakers. ED is the emergency department." I agreed.  She took the sign down and let me in.  After asking a few questions and taking a fresh face mask, she directed me to Day Surgery on the 2nd floor.

I arrived on the second floor and it was basically dark and closed up.  I tried a few doors, but they were locked.  I waited a few minutes and someone let me in.  There was no one at the check in, but there was a patient sitting in the corner who said, "She'll be right back."

A few minutes later, an attendant asked for my name then left.  Shortly after the other patient's name was called and she was being serviced at check it.  I was then called.  I signed off on some required forms, my ID was reviewed, my Covid card was copied, then I was told to have a seat.  Not too long after, a nurse, Paula arrived and called my name.  Verifying my DOB and full name and my reason for being there she walked me to an all too familiar Day Surgery Prep and Recovery room. I was told to undress and don the hospital gown and gripping stockings.  She went over the order of appearances and a thumb nail sketch of what will be happening, all while thumbing through my prepared book and signing off on certain tasks/forms.  Once in my new uniform, I was weighed and had a few tubes attached to me at various locations.  Just as discussed, I had a visit for the Ghost of Christmas Past.....no...wrong story...the anesthesiologist and his team, the lead nurse, then finally Dr Previte.  Each had their spiel and corresponding check/sign off sheet.  Many had the same questions, but I was consistent in my answers despite the lack of caffeine. Dr Previte reviewed the expected game plan and discussed possible scenarios (best case/worst case).  But it seemed there would be no overnight stay.  (YAY).

I received my stint in my hand.  Uncomfortable, yes. The whole team waited for the word then my entourage wheeled me into the operating room.  Much like a pit stop crew, each had their own task to perform, all at the same time.  I heard one person say, the doctor is on his way. Breath deep, you'll feel like you are drifting away.  I was out.

I woke up about 2 hours later.  Mostly uncomfortable, but not really in any pain.  The nurse said that everything went well and the doctor will be by to talk.  She gave me apple juice and crackers and adjusted the bed.  By this time I figured out that I had a catheter, which I was expecting.  She indicated that the urine was clear (no blood).  She also said that I was going to have it removed tomorrow.  [Encouraging].

Doctor Previte arrived and said, "There was more to do than I anticipated.  I found and removed 5 tumors." [I didn't think that was a good sign, since 5 tumors were removed before my treatment.  It was my thinking and hope that there would be none or some, but not 5].  He showed me pictures, but I had no reference at what I was looking at.  It looked like spin art to me. He went on to say that I wasn't going to stay over night, but he wanted to keep the catheter in for a few days.  But, Thanksgiving is Thursday and the office is closed Friday. So I'd have to wait until Monday.  OMG 6 days with this torture device!  He said he called in two prescriptions for me. [Given the number of tumors and relatively short period of time since the last surgery, my concern is: has it invaded the muscles?  Won't know until the pathology report.]

Eventually I was allowed to dress and have my ride pick me up.  Of course my prescriptions are delayed because the pharmacy need more info form the doctor and at this writing, the doctor's office is closed for lunch.  So I'll be chasing that down.  In the interim, I'm quite uncomfortable with the constant tugging and it's too late to have coffee (for me).

Post Script: Got my scripts. One is an antibiotic; other makes my pee orange.   Got an email confirmation of my next appointment.  Catheter will be taken out 11/28/22 at 9:40AM.  I'm counting the days and minutes.  Slept for 9 hours, albeit interrupted.  Once I find a position that's comfortable, everything is tolerable.  But anything else is quite uncomfortable. So basically meandering from chairs to bed with visits to toilet to empty my freshly made warm orange Julius. Might try playing piano today or not ;-)

More to come!

Semi-Annual with Dr. Song

Busy week this week with doctor appoints and hospital related pre-op registration, blood tests, urine tests, genetic cancer screening (tele-health) and so many SATs.

It was time to see Dr Song at Mass Eye And Ear, Waltham.  Not a fan of early morning appointments, but it was a reschedule so I had to take what was available.  So, I joined the ranks of morning commuters on the highways today.  I do not miss the commute.  People are so aggressive and have no driving manners.  But I gave myseld an hour and I arrived with some time to spare.

I checked in, sat and waited to be called.  At about 10:00 (the appointment was at 9:30), I heard someone call Richard.  The guy next to me stood up.  Wow, two Richards next to one another.  Luckily, I had the correct birth date, but he wasn't happy.  I guess he was there before me and his body language spoke volumes.

Generally I see a number of medical professionals who administer various tests.  The first one took just a few minutes and I was told to go back to the waiting room.  About 5 mins. later, I hear "Richard".  This time he spoke up and said which one?  Lucky me, I had the winning birth date.  Once again, he was visually pouting.  I was given an eye test and finally some dilating drops and was sent back to the waiting room.  By this time the other Richard was snoring.  I chuckled to myself.  As my eyes began to be affected by the bright lights he was finally called in.  I guess he wasn't happy to be disturbed at this point so he walked heavily to his exam room. [Wonder how his driving habits are?]

I was finally called into see Dr Song at 11:30.  The doctor said everything looked good.  The eye pressure was 17 in both eyes.  I take daily drops to reduce the pressure in my right eye.  So the pressure was reduced form a reading of 33 previously.  Good news.  But..... the capsule on my left eye was beginning to get cloudy.  I was told of the possibility of this happening prior to my last laser surgery and lens implant.  According to the doctor, the same thing happened on my other eye and I had the follow-up surgery to correct.  [I honestly don't recall that.  So it was so minor or it didn't happen.  I'll have to review my postings.  But it doesn't matter at this point.]

I'm scheduled for a YAG capsulotomy left eye on February 6th, 2023 at Surgisite, in Waltham. I have a post op follow up on 2/17/23 8AM (yuck)

More to come!

Next Procedure In The Works

Since my last post, I did have some moderate bleeding that started Halloween night around 9PM and seemed to 'almost stop' by midnight.  The following day I did have some 'color' but it cleared up. All seemed fine until November 10th when I was shocked to see blood again.  It was moderate but gradually cleared up after a few days.  Very disconcerting, even though I was told that I may have bleeding.  But, I was prepared for bleeding near the time of my BGC treatments.  My last one was October 12th, so a month later to have bleeding seemed to me odd.

Today, I had an appointment to provide a urine sample to ensure that I wasn't still bleeding or had another UTI.  In the past I had a call back the same day and was prescribed an antibiotic.  Still no word, so I'm taking it as a good sign.

At this writing, I'm scheduled to appear at Holy Family in Methuen on 11/22.  I've arranged a ride but I won't know the time of arrival until the day before.  I'm assuming it will be very early as previous procedures.  Given my recent bleeding I'm optimistic for good or expected results, but mentally prepared if the doctor needs to remove new tumors.  I just hope that the cancer hasn't spread to the muscles or I will need to stay over night and be forced to wear the 'bag' for 5 days.  So close to Thanksgiving, Murphy's Law will be in full affect I'm sure.

It is what it is.  More to come!

Round Six - Graduation?

Arrived at my expected time for my last BCG treatment.  By this time things are pretty routine at check in.  Still ace my quizzes and have an acceptable body temp to proceed to my providing a urine sample.  Oh ya, still getting dinged for $50 co-pay.

It wasn't as busy today, but I had to wait about 20 minutes before my name was called.  Like other times I was instructed to follow the medical professional to an exam room.  I saw the nurse practitioner, Alex today.  He poked his head in the examination room as I was being quizzed.  He seemed to be caught up with the back-log (or maybe he wanted lunch). At any rate, he said, "Today is your graduation day!  You know the drill, lower your pants and sit on the 'diaper'." He left, but not before saying, "I'll be right back."

The medical professional was still there readying things.  I jokingly asked if I get a diploma or a certificate of completion.  She thought is was a good idea and chuckled as she left.

Alex returned and said that I was once again receiving the full dose.  [Ok I said to myself]

By this time, I can say that the most unpleasant part of this in-office procedure is the insertion of the catheter.  Even though numbing gel is used it's pretty cringe-worthy.  I find myself making a tight fist until the uncomfortable feeling passes.  Once the catheter is in, I can sense that I'm going.  A weird sensation since I've always had the power to go and stop on my own.  The feeling of going 'on it's own' is kind of disconcerting.  I mentioned to Alex that I had to squeeze out enough for my urine sample.  But he said, "There's more in there." I felt drained and he showed me the urinal and sure enough there was a good amount.  He then said, "OK, it's going in.(BCG)"   I didn't (and haven't) felt anything for this part.  He then proclaimed, "I'm removing the catheter." Ah, Done!

I'm scheduled to see Dr Previte next Monday for a follow-up to this 'induction' round, then have a biopsy/cystoscopy scheduled for November 22nd.   

I got home and did the full two hours of marinade.  So far I'm doing alright.  Feeling kind of blah and having to go frequently with little output.  No blood...yet.  

Post Script: I had bleeding but it was relatively light and only lasted that evening and cleared up the next day.

More to come!

Round Five

Well round four of the BCG did yield some bleeding.  However, not nearly as bad as the previous.  Other than feeling chilly and a bit foggy, it wasn't too bad.

Round Five

I was originally scheduled to see Alex on Wednesday for round five, but I received a call late last week requesting that I come in on Tuesday.  Sure, why not?

My appointment was at 10:30 so traffic was moving along.  Got to the office with time to spare.  It was quite busy.  I checked in and got dinged again for $50.00.  Collected my specimen container, filled it and sat in waiting room waiting to be called.

It wasn't long and my name was called.  I was quizzed again.  They couldn't stump me.  I aced the test again.  I was brought way back to an examination room, and instructed to 'assume the position with pants down'.  The Nurse Practitioner, Torry administered the BCG today.  

After some grilling and check in with previous symptoms, she told me that I would be receiving a full dose today.  I didn't know that I had less than full doses previously. Apparently within each six rounds, one round will be full strength.  That was today.  I asked if I should be aware of worsening symptoms.  Torry said, " You'll probably feel the same way as other treatments, but maybe a bit more lethargic and a longer period of feeling blah'. It is what it is.

She was quick administering the BCG and said, "We'll see you next week."

I got home at 11 and began marinating. Unfortunately I didn't make the two hour goal.  While I was marinating, I received a call from Dana Farber.  My oncologist, Dr Mehta had initiated a genetic testing panel for me.  So the call was gathering family medical history (regarding cancer).  It helped the time pass.  I spoke with two people.  First took history, second pre-registered me for a tele-health call in Novermber.  More on this in later blog updates.

So at this point, I'm feeling chilly and foggy brained and kind of blah.  We'll see when, and if, the bleeding starts and how long it will take place.

 [Post Script: Bleed has started. Heavier than last time.  Hopeful it will clear up tomorrow.]

More to come!

Round Four

More Loose Ends

From my last treatment, I was bothered by side effects, most notably: bleeding.  

After last Wednesday's treatment, I did a few chores and picked up groceries.  By the afternoon I was beginning to feel blah, but I did manage to get my daily walk in.  By suppertime I was beginning to feel run down.  I had been drinking extra fluids to flush out the BCG, but late that afternoon, I began to have blood in my urine.  I did recall conversations and reading about that possibility, so I tried not to think about it.  I had planned on joining an online original music zoom session, but I wasn't feeling the best.  I contacted the host and informed him of my absence.  I did watch via Facebook Live post.  I wanted to join in, but my body didn't think it was a good idea.

Throughout the evening and night, I made multiple trips to the john anticipating that the bleeding might begin to ease.  No luck.  I was beginning to have flashbacks of my end of June episode, but I kept drinking fluids.  I slept OK and only got up once.  All day Thursday was pretty heavy bleeding with my passing many clots.  More and more fluids were imbibed.  Thursday was my birthday.  The weather was crappy and I felt crappy.  I survived.

On Friday, the sun was shining.  Finally, my urine was beginning to clear up.  It no longer resembled tomato soup, but now closer to a Rose.  As the day progressed, each void brought clarity. Finally by Saturday evening, there was no blood or clots.

I received confirmation of my next three BCG appointments and also a change on who would be administering.  I'd see Michael (the PA) one more time and the next two with Alex (the NP).  At least I'm getting the treatment.

On Tuesday, I received a voice mail from Dr Previte's office.  Apparently, my last urine test came back with a UTI.  I was informed that 13 day's-worth or antibiotics was called in to my pharmacy.  If I start taking the medicine 'today', I can continue with my treatments.  I scooted out and picked up the script.  One pill twice a day.

Round Four

I had a 10:30AM appointment in N Andover.  Traffic was moving along, got to the office almost 15 minutes early and checked in.  Got dinged for a $50 co-pay, provided a fresh urine specimen and waited to be called.

I heard my name.  I was quizzed and followed the medical profession to the exam room where I prepared myself for the treatment.  Michael arrived and after providing a few updates on what happened since last week, he arranged things for my BCG induction.  He's fast, efficient and does everything with a limited amount of pain/discomfort.  I was out of the office by 11:05AM.

Got home safely and began my marination.  I made all two hours again.  Those last 10 minutes are pretty uncomfortable.  Drinking fluids and taking things easy.  I'll try to get my walk in before sunset.  Also got notification that one of my meds (eye drops) were ready for pick up.

So far, just feeling a bit chilly, but I have a sweater on.  Fingers feel cold, but so far that's it.

More to come!

Round Three

Loose Ends

Since the last post, I did get confirmation that my surgery (biopsy/cystoscopy) had been moved to November 22nd at Holy Family, Methuen.  Scheduled as day surgery,  I'm sure I'll be having the much hated catheter as a parting gift just for playing.  Being so close to Thanksgiving, I hope it's removed so I can have some semblance of the holiday of over-eating. I'm still waiting for confirmation of my next 3 BCG treatments.

Round Three

I had my third round of BCG today.  The appointment was scheduled for 9:30AM.  I left the house at 9 and took the highway.  I was surprised how light the traffic was.  It was like a Sunday.  I made it to the N Andover office in a bit more than 10 minutes. There was no rush to get inside to check-in.  

Upon checking in and being charged $50 copay (no credit this time - crazy), I was given the urine specimen jar and marching orders to supply at least half a container's worth.  Easy enough.  Task completed. I waited to be called when I returned to the waiting room.  Being 'early' compared to last time, I observed a number of older males all dealing with similar problems.  Just hearing the various conversations and replies to questions, I knew I was in the club, unfortunately.

I heard my name called and a familiar medical professional greeted me. As we walked to the examination room, I was quizzed.  At least, when I gave my date of birth, she said, "Oh, Happy Birthday". I knew the drill, and prepared for my treatment.  Pants down, sitting on a diaper and having a rather large paper towel/blanket cover the family jewels, I waited for Michael.

Michael arrived and after the quiz he asked how I weathered the last treatment.  Other than being a bit sore inside, I did well.  He asked if I passed any blood or had any other side effects.  I said, "No". He asked how long I had held in the BCG while I marinated at home last time.  I mentioned an hour and almost 50 minutes.  He advised that I not have coffee next time so I can make the recommended two hours.  I mentioned that I had not heard back from the scheduler, Anna, on my next three treatments.  He looked at his laptop and said, "Yes, I don't see you listed.  But I did talk to Anna and she will be calling you with the times.  All the treatments are on Wednesday, it's just a matter of scheduling.  She'll call, probably tomorrow.  I will be seeing you next week".

He went to work.  Still unpleasant, but very fast.  "We are done", he said.  He said to dress and wait for Anna's call, then pointed out my egress and exchanged pleasantries. I drove home.

I grabbed the kitchen timer and assumed my first position of the marinade.  I'm happy to say that I made all two hours today.  YAY!

Now I wait for any side effects and the call from Anna.  

[Post Script]:  

9/21 - Side effects have kicked in.  Fleeing kind of sore and blah, unfortunately I'm now bleeding.  Hope it clears up soon. Also got a call and my colonoscopy scheduled for March 23, 2023. 

9/22 -Received a letter today from Anna indicating my next three appointments for BCG.  Next Wednesday through October 12th.  

Had a follow-up appointment with eye doctor I now have to reschedule. Still bleeding.  

Had a crappy birthday ;-( 

More to come!

Round Two

My appointment today for BCG round two was at 9AM.  Given the highway traffic last week , I decided to take some back roads.  Big mistake, I forgot to take in consideration that schools are open and there are too many buses.  Seems every intersection was another bus stop.  Even subverting the jam by taking secondary routes proved futile.  Others seemed to have the same idea and of course everyone was in a rush and no one would give you a break and let you into the traffic flow.  I left the house at 8:30 and I was still dealing with downtown traffic at 8:45.  Just when I thought that it would be smooth sailing, I encountered construction and one lane traffic at the former Western Electric on Osgood St.  Of course I hit every single red light.  But, I did manage to eek into a spot at the urologist at 8:58.

I entered the lobby and an attendant motioned to me to come over.  After finding my file and going through the Covid protocols, I was told that my co-pay today would be $30 because I had a $20 credit.  Still not sure what's up with that, but whatever.  I was given a specimen jar and told to provide a urine sample and return to the waiting room.  After that task was completed, I was called in to the examination room.  The medical professional quizzed me on some personal information, that I aced again.  I was brought to an examination room and told to drop my pants and sit on the exam table until Michael arrived. They provide a diaper to sit on and an extremely large paper towel to 'cover my privates'.

Michael arrived.  He was my Nurse Practitioner from last time.  I told him I had a few questions before we started so I wouldn't be distracted and forget to ask.  I then asked if and when I could get my Covid booster and also wanted clarification on how many treatments I will be receiving.  Dr Previte had told me I would have 6, but I've only been scheduled for three. Michael said that he would have to check on the answers to both questions.  He then proceed to set the exam table up and prepare the BCG treatment. Same discomfort with the catheter and strange sensations with the BCG syringed into my bladder.  But it was quick.  He said, "OK, you can get dressed and I'll be back with answers".

Got dressed and waited, the first attendant arrived and was startled with my still being there.  She said, "Hasn't Michael seen you yet?"  I said, "Yes. He was getting some information for me".  She left.  A few minutes later. Michael arrived and said his schedule showed me scheduled for next week, then it showed I needed to provide a urine sample on the 17 of October and then my cystoscopy/biopsy on October 25.  He said that the Covid booster could be given a week after my next treatment. [See more on this below]  I said, "Thanks, I'll see you next week".

Got home and began my two hour marination.  My goal was to make the whole 2 hours. The first hour was fine.  I even found a comfortable position for the portion requiring that I lay on my front side.  After the hour and half mark, it began to get uncomfortable.  I tried to wait out the urge to see if it would pass.  It did, but it wasn't long before the discomfort came back.  My phone rang and I could hear the voice.  It was Michael.  I answered the phone as I lay on my stomach.  Michael said he had an update but asked if my bladder was full.  I mentioned that I had one more turn to go and hoped to make the whole two hours.  He chuckled and said he talked to Dr Previte.  I was correct in my understanding that he wanted 6 rounds of BCG, however the scheduler only booked three.  Michael said that he will contact Anna and get three more sessions scheduled.  (I hope they are on Wednesdays)  However, the surgery schedule for October 25th will need to be moved out since the doctor wants some 'healing time' before the biopsy.  He said it looks like it might be November 22nd, but Sandy (surgery scheduler) will be in touch with me to confirm.  He also mentioned that I would have to wait a week from my last treatment before I could get the Covid booster.  So it's looking like November 16th right now for that.

By this time, the timer rang for my last position. But after 5 minutes, I couldn't take it anymore. I did better than last week, but 10 minutes shy of my goal.  I 'voided' (like a racehorse again).  Now I wait for any side effects to kick in.

More to come!

Retrograde? Yup!

For those in the know, Mercury is in retrograde until the end of September.  This means different things to different people and nothing at all to others.  Having a full Harvest Moon on the tenth and Mercury in retrograde at the same time, being a Virgo, one must be vigilant and expect the unexpected.  After all, It's a wise man who rules the stars; a fool, ruled by them.  (Thank you Darrell Martinie, the Cosmic Muffin).

With that back story, I had my 6 month check up with my oncologist, Dr Mehta, at Dana Farber in Methuen.  It was an early appointment with a blood draw done first, so I went to bed an hour earlier only to be rudely awakened by my alarm clock at 7:15AM.  Need coffee!

Got up, turned on the coffee maker, took my daily pills, checked my blood pressure, grabbed the local paper and sat down for a nice strong cup of coffee while I paged through.  (Ah, the simple pleasures.)  First sip, and hmmm...tasted like Dunkins' brown water coffee.  (ala Mrs Sloccum, "Weak as water").  I went back to the coffee maker and noticed that most of the ground coffee was still dry.  So I poured my cup of 'brown water' into the basket hoping for a stronger brew.  I felt adventurous, so I slowly poured the contents of the carafe.  Well that didn't go well.  It decided to spill over the counter and bubble up on the hot burner.  Used the quicker picker upper and managed to save one cup of the new brew.  Yuck.  Horrible taste.  But I did manage to drink it.  I needed the caffeine. Looking up I noticed I was running late so I finished the paper, made the bed and got ready to leave.

6th Month Check-Up

Traffic was typical for the time of day, but uneventful.  I got to Dana Farber when I had expected.  Had my mask on and entered the lobby.  I was greeted and screened for Covid.  Had my temperature taken and was directed to the 3rd floor. Arrived at the third floor and waited for an attendant to call me over.

I stated my name and my reason for being here.  She quizzed me on my date of birth, verified a few housekeeping items and printed my wrist band.  I was also given a tracking device so they could find me if I decided to walk around(?)  The attendant had very long nails and was having a hard time peeling off the paper so the adhesive would work.  She took a staple remover and was unsuccessful.  In fact she mangled it so another had to be printed.  She asked a co-worker to help.  Finally I got my wrist band on.  I was given my SAT to complete (but no pen).  However, I just got seated and my name was called.

Christine was my phlebotomist.  She took my vitals.  I was shocked at my blood pressure readings: 156/79 pulse 45.  That was high.  I take my pressure daily and today's reading at home was 128/69 pulse 49.  She said that all the movement and white coat syndrome causes higher readings.  (To my self:  Then why not have me sit/rest/stabilize before taking the readings?)

Christine then asked if I had an arm preference for the blood draw.  I told her that I don't have much luck on the arms and lately they have been taking it from my hand.  She wrinkled her nose and said, "Let me look at your veins first."  Generally I'm told that I have good veins, but history shows they don't produce anything except target practice for needles.  "Hmmm, they look good, but maybe they roll?"  She called in for reinforcements.  I noticed about a half dozen vials waiting to be filled.  Help arrived and she went in on my hand.  She was good, not much discomfort and the vials were filled quickly. YAY

I left Christine, but snagged a pen form her and another medical professional recorded my weight and height.  I did weigh myself this morning and I was 202, but their scale lied.  It read 205.  And, I removed all my lead bricks from my pockets...plus my shoes. She took my blood pressure again, this time with a reading of 129/70 pulse 50.  Retrograde effect?  Anyway those numbers seemed correct.  Gravity continues to gain ground.  Seems that I'm still shrinking.  A tad less than 6'3".  I was escorted to an examination room to wait for Dr Mehta.

I waited for 10-15 minutes for the doctor to arrive.  Just enough time to complete my SATs.  We discussed my other health issues.  I provided an overview of my bladder cancer travails and most recent cystoscopy/TURBT and how I'm now being treated with BGC.  He indicated that BGC does have good promise for most, but (like me) was in a quandary as to why it took so long to get the treatment. He did say that I was fortunate to have it be non-muscular invasive cancer.  He did add that after all the treatments and resections, if the BGC isn't effective, he has an alternative immuno-therapy treatment that has been recently approved.  He said it's not chemo and it's another step that could be taken before the point of having to remove the bladder.

Dr Mehta then began to focus on my follow up.  He inquired on my neuropathy.  He reviewed my mammogram and performed a physical exam of my breast and lymph nodes. He said every thing looks good.  He also reviewed my blood test and said everything looks normal.  I had mentioned that my RBC (red blood cell count) had been below average due to my blood loss in July.  He said the numbers are in the normal range.  (I did get the test results in my portal and there were no red flags).  He scheduled my for my next mammogram and subsequent follow-up in March 2023.  He also scheduled me for genetic testing.  Since 2015, he indicated that there are new gene markers to check for.  So I will be receiving a call from then.  More on that.

I had inquired on the results of the previous test. And, he couldn't find it it my file.  He did see that there were notes that indicated both BRAC1 and 2 genes came back negative for cancer. He said the new test results will have more information.

When I got home, I checked my cellar cause I recalled that I had purchased a replacement coffee machine (on sale) some time ago.  So out with the old and in with the new.  The new one is really stripped down with just an on/off switch.  As long as it makes good coffee, that's all I want.

More to come!

The Start Of Something...good! I hope...

Since my last post I managed to get all my appointments in order.  There was a bit of confusion on what was verbally stated and what I received in the mail and subsequent emails.  Apparently the August 31st appointment wasn't really an appointment for my urine sample.  In order to get me 'in the system',  they need to create an appointment, but I could still come in between 9AM and 3PM.  I chose to go in during the fake appointment time since I didn't want to have any surprises.

I arrived at the appointed time and everything went like clock-work.  I was in and out in under 10 minutes. I was hoping I did not get a notice (like one time) that I had a UTI.  This would have made me ineligible for the treatment, but luckily I received no notice.  Good sign.

Treatment One

I headed out at 10AM today hoping to be at the N Andover office by 10:15.  It's only 10 miles away and all highway.  Got on the highway and noticed a sea of cars and red tail lights up ahead.  Also noticed the estimated time signs indicating a delay.  Luckily I was near route 213 and decided to take the back roads.  Good thinking on my part.  

I got off at the Pleasant St exit and took a side street that brought me to route 110 in Methuen.  Jumped on to Marston St then meandered to the 495 underpass to my exit on the other side of the river.  Of course I was stressing along the way and had every red light and slow poke.  I generally don't use my horn to alert drivers who aren't moving when the light turns green, but today I needed to, twice.  It's not like I blasted the horn right when the light turned green, but I waited a bit.  I guess they had important texts to send/read.  Ya, I was that guy tooting the horn today.  I didn't want to be late cause there was some mention that if I was late, I'd have to reschedule.  Didn't want that.

Finally arrived at 10:26AM and got to the window to check in.  After the Covid screening and temp check I was told I had an account credit so no co-pay today.  (Interesting, but Thank you).  I was given a plastic container for a urine sample and I noticed the attendant wrote down 10:29.  Phew!

I provided the urine sample and returned to the waiting room and had a seat. Seemed like less than a minute and my name was called. I was instructed follow her to the examination room.

The medical professional quizzed me on my date of birth and other personal info that I aced, by the way.  Approaching the examination room, I could see that it was still being set up.  She asked Michael if I should wait for him to complete and he said, "I'm just about done.  He can come in".

Michael is the Nurse Practitioner who administered the BCG treatment.  He verified my reason for being there and provided a brief overview of the treatment.  

BGC is Bacillus Calmette Guerin Vaccine.  It's basically the vaccine used for Tuberculosis.  It has shown great promise/results for treatment of non-muscular invasive bladder cancer by triggering an auto-immune response when instilled in the bladder. He said that he would inject the vaccine through a catheter and send me home to 'marinate' for 2 hours before 'voiding'.  He went over the most common side effects:

• Transient fever;
• Flue-like symptoms;
• Abdominal lymph node swelling;
• Bladder inflammation (causing the bladder to hold less urine);
• Frequent urination;
• Possible increased sensitivity to certain antibiotics.

He reviewed the more serious side effects which he said are rare, but needed to be noted.

He provided a copy of the consent form with all this information and had me sign and date his copy.  He then explaining the 'marination' post-treatment.  

Once home, I am to lay on my:

• Back for 15 minutes;
• Right side for 15 minutes;
• Front for 15 minutes; 
• Left side for 15 minutes

Then, repeat for a total 2 hours of 'marination'.  After, I was to 'void', then flush with a cup of bleach.

I noticed a huge syringe of clear liquid and said, "I need to have all that and hold it in for two hours?" He said, " Do the best you can.  If you have to go, then go.  But try to hold it as long as you can."

He then instructed me to 'drop trow' and he went at it.  Not too uncomfortable, but still a bit unpleasant.  It was quick and he told me to dress then I could leave.  He said, "See you next week."

I got home and immediately began the post-treatment.  I had a kitchen timer next to me.  While waiting to turn over, I practiced a jazz standard, Georgia On My Mind. I visualized the chords and fingering, in my head and was 'shaping' my fingers to 'air guitar' the chords.

Ding!  Turn over.   More of the same.  Ding! Turn over.  I'm not a stomach sleeper so this position was quite uncomfortable.  That was a long 15 minutes.  Ding! Turn over.  Ding! Back to my back.  Needed to go, but waited for the urge to pass.  Ding! Turn over.  Really gotta go now.  I had a flashback to my commute and having to deal with back-ups on the Tobin bridge and having to get rid of my morning coffee. Really uncomfortable.

I looked that the timer and I had 5 more minutes before my next rotation.  I couldn't take it any more.  So after almost an hour and 40 minutes I surrender to the porcelain god and pissed like a race horse. That felt good.

So I'm waiting to see what happens next.

More to come!

Some Encouraging News

Since my last post, I had another blood test and colorectal (mail in) test.  Results came back yesterday.  Most red flags (from last blood test) have turned green.  The red flags remaining, related to RBC (red blood cell count) have improved, but are still borderline red.  I'm hopeful that these numbers will continue to improve.  I do have a blood test scheduled at my oncologist for September 12th.  Maybe (hopefully) I'll see some improvement with those results.  

I also received the results from my mail-in colorectal test and no blood was found in the specimen.  I did call the proctologist and I have a request for a colonoscopy in the works.  Both my primary care and proctologist office said they were running months behind.  So this mail in was helpful in knowing that there's not a great sense of urgency.  

During a previous appointment with Dr Previte, he has mentioned that my BGC treatments would begin once I had healed from my surgery.  It's been 6 weeks, so I called the office inquiring when I would be starting the induction.  I called Sandy who told me that Anna (the scheduler) would be calling me.  Not wanting to wait longer, I called the office and asked for her.  After some pre-screening questions, she reviewed my chart and indicated that I would be staring the BCG treatments on September 7th.  However, I needed to provide a urine sample on August 31st (week before) to be cleared to start.  Anna also indicated that the treatments would be every Wednesday at the Sutton St location and after the third treatment, The Doctor wanted to see me for a progress review.  If things were going according to plan, I would resume the treatments for another three weeks.  Anna said she would email me and send a hard copy with all the information.  

As I was writing this, I was notified that I had 4 emails from Northeast Urological.  Sure enough there were three for the dates we discussed, but one appointment was for August 31st.  Unsure if this was an appointment or a reminder for the urine sample (email wasn't clear), I called her back (of course got her voice mail).  So I'm waiting for that clarification.

So the good news:  It's finally going to begin!

More to come!

Light At The End Of The Tunnel (albeit, dim)

July 2022

Having survived my latest adventure, July hasn't been the best. Starting out badly and continuing with various challenges, the latest record breaking heat wave just seemed to make matters worse.  Being so unhealthily hot and being forced to remain inside trying to remain cool with a portable AC was a challenge unto itself.  While the temps outside soared to 100 + degrees, afternoon sun made inside temps read in the mid eighties.  When the sun went down and after running all night, the next day would often start at a nice 72 degrees before inching up as the day progressed.  Finally the heat wave ended and we've been having very pleasant (dry) weather.  Unfortunately, we've had no rain so we are in a severe drought.

July is just about over and I had a few follow up appointments with both my primary care and urologist.  My primary care had asked that I have a blood test/panel done prior to my appointment (7/27).  I had scheduled an appointment with Quest Diagnostics months ago to coincide with a two week window.  Of course I had no knowledge of what July had in store for my bladder, so I was quite concerned when I saw the results of the tests in my account.  It seemed I had more red flags that green.  I did some research as to what the reading might mean and was not happy at what 'might be'.  So instead of worrying, I'd let the doctor tell me.  But it was on my mind.

I had my follow up with Dr Previte at Northeast Urology in N Andover yesterday.  Although I had no bleeding, I had much on my mind.  What was the pathology results?  Given I had 5 tumors removed, does this make me ineligible for the BCG treatment? Will I have to have my bladder removed?

After an easy check in, I has given a cup to collect urine.  After completing that task, I returned to the waiting room and was called soon after.  The nurse directed me to an examination room and I was told that Dr Previte would see me shortly.  Said some prayers and waited.

Dr Previte arrived and after exchanging pleasantries, he asked if I had any bleeding and how I was feeling (recovering).  No bleeding to report and all the plumbing was working OK.  I did report that I had to get up once or twice a night to 'go', but other than that I've resumed life and like everyone, was dealing with the heat (we had).  The doctor said that I was still healing and having to get up, was normal under the circumstances.  Then he pulled up a surface and started arranging my file, paperwork and some printed literature. He then provided a recap of what had transpired and some results.

He said, "No surprise that pathology reported bladder cancer.  But, it's still T1 (lowest level before having to have a bladder removed) non-muscle invasive bladder cancer and treatable". He reiterated that they were high-grade tumors, very abnormal and disorganized, but most aggressive and more likely to grow into the muscle.  He took out 5 tumors and showing an illustration of the bladder, he pointed out their proximity.  The one that was bleeding and the biggest was at the top, the next large one was off to the side, and there were three smaller tumors scattered on the surface. He then said something that made me less anxious, "We can begin the BCG treatments".

Bacille Calmette-Guerin (BCG) vaccine is an immunotherapy drug.  This form of therapy is designed to boost the body's natural defenses to fight the cancer.  It uses substances either made by the body or in a laboratory to bolster, target or restore immune system function.  Given through the catheter placed directly into the bladder, BCG attaches to the inside lining of the bladder to fight the tumor.  BCG is used mostly for patients with non muscle invasive high grade bladder cancer to reduce the risk of cancer recurring or progressing.  Before BCG treatment, patients need to have a TURBT (Trans Urethra Resection Bladder Tumor) [Which I just had on 7/6] to make sure that the cancer has not spread to the muscle.  BCG treatment may help patients avoid cystectomy (removal of the bladder).

The Benefits:    

First-line treatment for carcinoma that has not spread outside the bladder.

The Risk:          

It cannot be used immediately after the surgery because the risk that it will be absorbed into the blood stream.  It may cause flu like symptoms in some patients as well as infection in a small number of patients.  Pain and burning may occur during urination and patients may feel the need to urinate frequently.

The Plan

After the healing, probably mid August, I will begin a 6 week Induction.  My understanding that I will go to the office once a week for 6 weeks where the drug will be induced.  Sent home and told to marinate for two hours, I then pee it out.  I have to refrain from having fluids so as to not dilute the drug.  I'll need to monitor my temperature to ensure that I hasn't gotten into my blood stream

After the induction phase, Maintenance will begin.  My understanding is I'll be having more of the drug but at greater intervals.  At the three month mark, I'll have a cystoscopy.  He did say that the first would be under anesthesia, but out patient.  Down the line, they would be in office.

Finally, BCG!

I got home and had a voice message that a surgery date has been scheduled for October 25th and a pre-op appointment with Dr Previte the week before.  I was confused because I thought he first appointment would be the induction.  So I called and was told that surgery dates are booked first then they work backwards.  Made sense now.  I just need to hear when the induction will begin.  Hopefully I'll hear today or tomorrow.

Primary Care

Had my annual today with Dr Mitchell.  After checking in and getting SAT's to complete, I was called in by the nurse.  My weight and vitals taken, I was told Dr Mitchel would be right in.  Wasn't long and she arrived.  I brought her up to speed and she reviewed notes and test results.  I was dreading that those red flags I saw from my blood test would open up Pandora's box of maladies, but she said my numbers looked good and some of the anomalies were due to my recent surgery.  She did want me to get re-tested in a few weeks.  She said, "It takes a while for the body to recover and get all the red blood cell counts up again considering you had lost a lot of blood".  [I was hoping for that diagnosis].

She checked everything and 'nothing jumped out'.  She did provide a referral for an overdue colonoscopy (because of Covid) and a mail in test for colorectal (fecal blood test).  She said, "I won't need to see you for a year."

July started out horribly wrong, but ends with much optimism.

More to come!

Good Riddance Catheter

After a 5 day stay, I bid adieu to the catheter.  I knew I had no-love for the device, knew it is/was necessary, but not saddened in the least to rid of this torturous device.

I recall reading that during WW2, American POWs captured by the Pacific branch of the Axis were forced to dig shallow graves smaller than their height and width.  They were forced to stay in their grave, but because it was too small, they had to stick their feet, head, or arms out in order to fit.  To make things worse, they were forbidden to stick any of their body out of the confined space.  If they did, their captor would step on their hands, bash their legs/arms/head to gain compliance.  Horrid!

These last days, trying to sleep, that's all I could think of.  I could find no comfortable spot and turning tugged the tube and was painful.  This made restful sleep nearly impossible.  As a result, my back, legs, arms and muscles are sore.  In addition, because of my tag-along friend, I could not take my daily walks.  So I was also burdened with constant charlie horses.  I hope things improve.

I had an appointment today at one of Dr Previte's offices in N Andover to have the catheter removed.  I had googled the location and had a good idea which building the office was located.  I lucked out with a parking space near the entrance.  The elevator to the third floor was right off the main entrance, so excessive walking wasn't an issue.

Upon arrival in the office, I was temperature checked, ID'd, grilled with Covid questions and charged a co-pay.  It is what it is.  I didn't have to wait too long before the Nurse Practitioner called me in to an examination room.  She asked a few follow up questions and explained the immediate next steps.  She dismissed herself and said the Zack will be in to remove the catheter.  Finally!

Zack arrived and spread out a 'diaper' over the examination table hand had me drop my shorts/underwear and lie back.  He explained he was going to infuse me with some sterile water to help me 'go' and make sure the plumbing still worked.  He had 4 cylindrical syringe pumps-full of water.  After the first I got that 'gotta pee' feeling, then another injection, then another, then another.  Oh my god, did I have to go.  He then said he'd be removing the catheter and I'll probably pee, so he gave me a plastic urinal (parting gift just for playing?).  As soon as the catheter was removed, the dam broke and I got about 400ml of fluid, although he pumped in much more.  Nothing more seemed to come out, so I stopped.  He said, "Why did you stop"?  I told him because that's what you do when you are done.  Apparently he expected to have me 'leave the channel open' and just drip.  He asked to me to stand.  Picture my standing on a stool with my pants down trying not to lose balance.  He gave me his hand and had me step off the stool.  I did manage to do a bit more pee.

Zack then said that I may see some blood, but it shouldn't be alot and there will be burning.  He said the catheter had been stretching the urethra and things will return to normal, but there was a concern that when that happens, I might not be able to go.  He said that if I don't go by 2PM, call the office.  He said that I may have to have a catheter again.  [Please No]

He told me to not force things and 'go' when I had to.  He told me to take the urinal and use it if I'm driving and/or as the need arises.  [How do I explain this to an officer who stops me or anyone who sees me committing open and gross lewdness?]

Finally home and I went pee (not a lot but I went).  I have to drink fluids and watch for blood, clots and possible stoppage (bladder spasm).  Looking forward to a shower after 5 days of feeling gross.

And The Adventure Continues..

Since my last post there were some minor updates, but I was waiting for the 'event' before including those in the report.

I ended my last post with my being treated for a U.T.I.  After finishing up my script of antibiotics, I was instructed to wait a few days then drop into the Sutton St. office to leave a urine sample, any time (M-F) from 9AM-4PM.  Easy enough, right?

On Thursday, June 9th, I had an appointment in Lawrence.  Since I was in the area, I stopped by the Sutton St office at about 3:30PM.  Very large complex with very poor signage.  It took me almost 15 minutes walking around and in the building before finding Northeast Urology.  Masks were required so I walked back to my car and got mine.  Got to the door (locked) and there was a sign to knock for entrance.  No luck.  Time is ticking.  Finally a patient was coming out and I entered.  It was almost 3:50PM.  The receptionist looked up my record and asked why I was there.  "Oh, it's too late for a sample.  They just picked up all the samples for the day at 3:30PM".  I wasn't in a mood to argue or complain, so I said I'll be back in a few days.

I returned Monday, June 13th and was able to leave a sample.  Last time I was quickly notified that I had an infection, I received no such call this time, so I assumed everything is OK. (Never assume)

I received an email about a pre-op appointment with Dr Previte on June 28th and Holy Family, Methuen scheduled me an appointment for lab work (blood and urine) the same day.  So I was in the area so killing two birds with one stone made sense.  Dr. Previte's appointment was first.  I arrived, the attendant looked up my record and gave me a urine collection cup.  Strange, I thought, but I did as instructed.  After completing that task, I was told I was all done.  So, what happened to the sample I left the previous week?

I scooted on over to Holy Family in Methuen and queued up in line for lab work and they didn't have any paperwork.  They made a few calls and said they are waiting for some faxes (Never understood why fax machines are used in this day and age.)  It wasn't too long before I was called to have my blood drawn.  The phlebotomist was very polite, but had the hardest time getting blood even though I had 'great veins'.  After being jabbed three times and not getting the mother-lode,  she called in for reinforcement.  Another woman arrived and within seconds (and almost painlessly) got the desired amount of blood in one try.  Go figure.  I was asked to provide another urine sample and then I was on my way.

Things were fairly normal health-wise for a spell until I had a bout with Vertigo for a few days.  I've had it before and it passes after a few days. I do Epsley's Maneuver and in the past it helped.  This time it just made it worse.  So I stayed low on the radar and had a light calendar for musical performances.  I did mange to play an hour set, but it was tough when changing guitars or sudden movement of the head. As soon as it came, it was gone. Hope it takes a long hiatus before deciding to visit again.

On June 30th, I noticed a tinge of blood in my urine. The following day my stream became a trickle, so I dug out a prescription Dr Hurley gave me in October when I had similar symptoms.  Within a day, the trickle turned into slow stream.

On July 1st, the City of Haverhill was celebrating the Fourth of July with two live bands and fireworks at the stadium.  A friend who lives nearby in Riverside traditionally has a gathering at her house and we watch the fireworks from her deck.  Last year was very cold, so we watched over a fire pit.  Despite the weather everyone had a good time and Robin and I provided some entertainment. Well this year, it was hot and humid, but there was a breeze. All the makings for a wonderful time...except about mid day I was bleeding quite heavily.  It seemed I had to go every 15 minutes or so and it appeared to be mostly blood. I decided that it would be best to stay home.  Glad I did.

July 2nd brought more visits to the toilet with heavy amounts of blood, but now after a strong start, the stream would stop like a door slammed shut.  I exercised my kegel muscles and managed to dislodge the grossest blood clot with a consistency of jelly.  Then the stream came back, still bloody. It seemed I always had more in me, but didn't want to force things.  

I went for my walk and as soon as I got home, I had the urge, and like before, I had a strong stream then complete stop.  Kegel, then clot then urine/blood.  At this point it was the perfect storm.  A holiday weekend, usual suspects for rides away enjoying the weather and doctor's offices closed.  So I decided to drink copious amounts of water, figuring it would flush me out.  Wrong.  After 3-16 oz of water, nothing.  I tried to sit and watch TV, but every five minutes I was pausing it to go to the toilet.  Just a drip.  More kegel, more dripping, more kegel, a bit of a stream, but where is all that water?  At this point I was seriously considering going to the ER room.  I waited a bit and on my last try, a fire hose, so explosive that my toilet area looked like an episode of Dexter.  The blood and huge clots were disgusting and a real joy to have clean up.  But I was able to go. After cleaning up, I decided I will now sit to go each time versus standing.  Good decision.

I stayed up until 2:45 AM running back and forth to the toilet (and sitting).  I was able to get output, probably all the fluids I had had.  Decided to turn in and had to get up about every 45 minutes.

Feeling like a zombie the next day, the output was less 'tomato soup like' and more like a Rose.  I was concerned that this episode may prevent the schedule biopsy procedure from taking place, so I kept under the radar for the 4th of July and just binge watched. 

On July 5th, I called Dr Previte's office to inform them of what happened.  By this day the urine was almost back to being normal color.  The attendant took my information and checked with the doctor and said that it shouldn't be a problem.

Day of the procedure

I had arranged to have a friend, who lives in Salem NH give me a ride to Holy Family, Methuen for my day surgery biopsy.  I needed to be there for 6AM.  Since I had to fast, an early morning shower will wake me up and get into compliance (no deodorant etc). Aaron arrived a bit early, so we headed to Methuen and got there in about 10 minutes.  Amazing there was no traffic that time of day. He dropped me off and I estimated that he may need to pick me up mid day.  I went inside and was screened for Covid symptoms, but was not allowed to go to the 2nd floor until 6AM so I waited in the lobby with a few others.  Was finally given the OK to proceed so I took the stairs and the entrance for day surgery was locked. Not quite 6 yet and no seats to sit, I found a window ledge and parked my butt.

A bit after 6, the check-in receptionist arrived and unlocked the door.  She took our names so we could be called in the order of arrival then began powering up her machines.  My name was called, my ID was shown, my Covid Vaccination card was copied and I was told to wait until the nurse called me.

Not long after, Krissy called me in and brought me to my home base.  I was instructed to disrobe and get into the hospital garb.  While doing this she took some info and verified and/or entered info into her paperwork.  She told me the order of appearance, from anesthesiologists, attending physicians, attending nurses and Dr Previte himself.  Krissy was able to stint me (after two tries) and others appeared, introduced themselves, asked certain questions related to their role and completed paperwork. Dr. Previte arrived and quickly reviewed what he was going to do and about how long it would take. He signed off on some paperwork and another nurse stopped by and finished up.  A few guys showed up (didn't look like the mob), but they wheeled me into the operating room around 7:30AM.  Really, everyone was so polite, kind and really cared about doing a good job and making my 'brief stay' the best.

In the operating room that I dubbed the 'meat locker' (even got some chuckles), the attending staff worked like a well oiled machine explaining everything as they did it.  They were just awaiting the arrival of Dr Previte before administering the anesthesia.  They got the word and said, breath deeply.  I did and everything grayed out.

Coming to

I opened my eyes and saw the clock on the wall from my home base.  It was a bit after 9:30AM.  I wasn't in any significant pain, although the nurse said she would give me something if I needed it.  I opted for a Tylenol.

As I came to more consciousness, I did realize that I had a Foley Catheter. (Not a fan).  But either I was used to the intrusion or that specific discomfort didn't kick in...yet.  (Of course it did later).

Just resting and being a fly on the wall, there was lots of goings on and conversation.  I'd listen in on certain conversations that seemed interesting, but was always interrupted by a fellow patient two bays down who was quite the whiner.  In addition he had this very annoying clear the throat thing happening every time he had something to say.  He seemed to have plenty to whine about. From what I gathered he also had Dr Previte for his procedure, but I'm not sure what procedure he had. He was really annoying though.  Those nurses are angels!

Not long after, Dr. Previte arrived.  He said he spoke with Aaron (my ride) and brought him up to speed.  Well, my cystoscopy/biopsy turned into a TURBT (trans urethra bladder tumor resection). [This makes number 3 for me].  Apparently when he went in he saw, removed and cauterized one that was causing the bleeding.  However, he found 4 more that he 'scraped' and cauterized. So 5 tumors total.  

 

[Reasonable minds would wonder if I had had the BCG treatment in March if this could have been prevented.  All because of the BCG global shortage. Sobering thought.]

The doctor said that he sent the biopsies to pathology and he would have follow up visit scheduled in a few weeks to discuss the next steps.  

 

[Another sobering thought.  Am I still a candidate for the BCG that he has? When would it start?  Has the cancer worsened from T1(A) stage?]

He also said that he wanted me to stay over night to monitor for blood and I would have the catheter until Monday.  Grrr!  Odd thing, even though I had 5 tumors removed, between the saline solution and other fluids given through IV, my output was good and bloodless. But he's the doctor.  I contacted Aaron who confirmed he spoke with the doctor.  Unfortunately he wasn't going to be around the next day for a ride home.  I told him thanks and don't worry I had another person that has offered to help.  I contacted Cheryl King, from my musical community, and she said she was very happy to help me out.  So I have a ride home.

As the afternoon went on, the nurse gave me some graham crackers and ginger ale.  [Why?  Those things are so dry and hard to swallow.  She also gave me saltines (I passed on those).  I choked the crackers down with some ginger ale.]

 

Hours later I'm still there.  My neighbor was still blabbering and clearing the throat. The nurse stopped by and asked, 'Would you like some lunch'.  "Yes", I said.  She called the kitchen and I spoke with the attendant that said all they had was BBQ chicken and corn and a cookie with a beverage.  So that's what I got.  You'll eat anything when you are hungry.  The chicken was so dry the plastic fork broke.  The corn was boiled to death and was tough and tasteless.  Don't think I could have eaten the chicken if it didn't have BBQ to assist in the mastication. I ate it all, but saved the cookie for later.

 

Hours later I was told that they were waiting for a room for me and my neighbor.  I remember as a kid being in a ward.  I really hoped I get a private room far from Mr Phlegm, the babbler.

Finally at about 6PM, I was told that there was a room for me, but stop!  Was I cleared for Covid since I was being admitted? Staff quickly scramble to do a rapid test.  Being in a climate controlled room all day, by nostrils were arid as the desert. However, the nurse swirled until my eyes watered.  And, the test was done.  No Covid.  (Thanks for blessings).

Beam me up Scotty

One of the 'mobsters', named  Brian showed up and proceeded to push my rolling bed to my home for the night.  Arrived at the St Mary's Unit of the Fenton building and was pushed to room 215.  I was greeted by two nurses.  One was in training.  Her name was Rose. Although she had been an RN for many years she was training for this floor, so her teacher (name escapes me) was shadowing her and providing guidance when needed. Rose was exceptional.

 

After 'checking me in' and entering info into the computer, Rose asked if I wanted supper.  "Of course", I said.  She called the kitchen and attendant said there was pot roast, potatoes and carrots with ice cream.   "Sold".

Rose was very attentive, friendly, warm, comforting and genuinely a wonderful person.  And she had a sense of humor (similar to mine).  I can't say enough about her.  We just clicked.

Food arrived and though relatively skimpy portions it was good.  Fresh carrots, real mashed potatoes and tasty roast.  They forgot my ice cream, but I still had my cookie ;-)

Wasn't interested in watching TV, but I did check in for local news and weather.  They use Direct TV satellite service which is horrible.  So just as well that I wasn't interested in watching anything.  It was nearly impossible to get comfortable between the small bed and all the tubes and cords.  I managed to turn onto my right side and took very short cat naps.  But between the various beeps, ringing bells loud talking and other goings on it was difficult at best.  It seemed every time I fell asleep someone would come in to take my temperature, measure my bag's output, give a pill or some other interruption.

Time slipped by, the sun set and there was shift change.  Rose was replaced by Scott. He too was caring, personable, quite helpful and supportive. I tried to get some sleep.  An announcement that visiting hours are over was heard (and roused me). Things began to quiet down, but I just couldn't find that comfort spot.  I must have lucked out or the body just gave up, but I was awakened for some pills at 10:30PM.  Of course I got a second wind.  

 

Tried to watch some TV. There was something on the History channel then I watched the local news before shutting it off.  I lay their trying to recall words to my latest song trying hard to get them ingrained into my memory, which was helpful.  I actually had a new tune going through my head, but had nothing to solidify it, so that's gone now. All this made my brain sleepy so I dozed off for a few hours.

I was awakened by a familiar voice and throat clearing sound.  OH NO! Mr. Phlegm, the babbler...in the next room.  It's so odd how the brain hones in on certain sounds and they become increasingly louder and bothersome.  What can I do?  I tried like heck to ignore, but what a whiner, and he was loud.  Icing on the cake is - he was talking on his phone on speaker with his wife and he was talking like he was on an air field while a jet took off.  I felt sorry for Scott who seemed to be called every so often.  Scott was very professional and handled things as diplomatically as he could even when there was nothing he could do.  I was just feeling grouchy at this point and tried to dismiss the noise.

At about 4:20AM Mr Phlegm, the babbler was up for the day.  Poor Scott was at his beckon call.  Still trying to appease.  I'm sure everyone on the floor by now knew that Mr Phlegm, the babbler had an aversion to oxycondone.  According to his rants, he was given the drug after surgery and it helped, but it just came to him that he didn't like it.  He was in pain and refused to take more and wanted something else (not offered or available) other than Tylenol.  Once again at this early hour, speaker phone to his wife, to the doctor's answering service to even calling the main hospital number. Scott tried like heck to calm him down.  I heard Mr Phlegm, the babbler sort of threaten a psychotic episode.  This is now interesting.  Things got quiet, but I could still hear the throat clearing. What happened?  Hmmm

I dozed a bit, but it was now time for temperature and blood pressure check, then pills.  Awake and groggy.  Possibly dozed again and woke up to breakfast.  Vegetable frittata, home fries, apple sauce, cranberry juice and coffee (yes yes).  I ate/drank everything.  More staff changes.  Measuring my output recording values. More pills, since I hadn't expected to stay the night, so they gave me what I would take at home, even the eye drops.  (I wonder what they do with the rest of the bottle seeing they only used one drop?) Rose scanned each pill number so it populated their computer system and named the drug.  There was one mentioned that I have not taken for years.  She said it might be from the same family of drugs, because one (bystolic) was not listed, but she said she would check. Throughout the day I would remind her about it, and she said she hadn't received remedy yet, but she'd ask again.  There was talk about my going home since there was no blood in my bag and output was really good.  So I need to get up and take a walk to see if movement would trigger bleeding.  If not, then I'd go home.

About an hour later, someone from the kitchen staff was taking orders for lunch and supper.  I indicated that I will most likely go home, but was informed that they just wanted to have the order just in case. Ok, Lunch: Turkey Dinner, Supper: American Chop Suey and garden salad.  I figured I see none of that.

Where does the time go?  It was lunch time.  Turkey dinner wasn't too bad at all.  Real potatoes, squash, savory stuffing and turkey with gravy.  Apple crisp for desert and ginger ale. I ate it all.

Took a few cat naps, then Rose came in and asked if I could take a walk with her.  Why, yes if it gets me out of here.  So she untangled me, disconnected my IV and got me up.  I was greeted with, "Oh my god, you are so tall".  I get that a lot.  I sit short and probably lie short, but stand tall...LOL

I was concerned that my neuropathy feet might be a problem when walking without the support of footwear, but I did OK.  Rose was so happy and wanted me to walk past the nurse station so all could see me.  She's a sweetheart.

I reminder her of the last pill and she left me in my room while she checked.  So I stayed slowly walking in my room.  All of a sudden the velcro holding my catheter tube let loose and the weight of the bag caused the tube connector to uncouple. Well I can kind of had my water break.  Yuck.  I slowly waltzed to the nurse-caller and said, please send Rose back immediately.

She returned and was so sweet about the mess.  "Don't worry, I got this", she said. I needed new hospital socks and a new velcro strap.  She told me to sit since I had a bit of blood in my bag now.  She thought that maybe the pulling cause some bleeding so she wanted to see if it would clear up. All I could think of is yet another night with Mr Phlegm, the babbler.  Ok, think positive thoughts.

I sat there and watched the output fade from red to orange (pills make the urine orange).  So that was good. Sitting, sitting, waiting...then CODE RED, CODE RED!  What?

My room door gets closed, I hear other doors close.  I see fire trucks, ambulances and other emergency vehicles. I see crowds of people assembling en masse.  OK, and I'm in my room with the door closed with a pee bag..  Well I hear nothing inside.  Did they not know I was here because I was sitting and not in my bed?  Is this how it ends?

I see no smoke. I smell no smoke.  Bomb scare? Localized problem?  Questions! Then I see emergency vehicles leaving and people dispersing.  What was that about?

Very quiet, then a noise.  Food cart.  Supper is here! No one else around.  Well, I chow down.  Salad was freash but there was no dressing, but I ate it all.  American Chopped Suey taste OK pasta was over cooked.  Bread stick was good.  And, I got 2 vanilla ice creams.  (I guess to make up for the one I didn't get the previous night).

Not long after Mark, from accounting came by and had me sign a discharge paper for medicare. Then Sandy stopped by and confirmed that I would be discharged.  Shortly after, Rose showed up with some discharge paperwork and reviewed it with me.  She brought a new velcro fastener, but it wasn't the same one, but we jury rigged something. She replaced my socks and asked about my needing transport (someone to wheel me out) and for me to contact my ride.  Yes, I was leaving.

I got dressed and had to improvise to get the bag and tubes under my sweat pants.  Rubik's cube comes to mind. Never got that last pill, but I'll take it when I get home. Ok, I'm ready.  Ghost town all of a sudden.  I decided to walk out without waiting for transport.

I got the the main entrance and Cheryl was there waiting.  Got in and we went to Walgreens and picked up some meds. Got home at about 7:15PM.  A bit warm, but I was home.  Got comfy.  Fashioned a belt to hold the bag when walking.  Used a wire hanger to fashion a holder for the bag when sleeping and slipped it between the corner of the mattress.  Checked the mail, paid some bills, caught up on email and settled in.  Went to bed at 10:30 and slept 10 hours straight.  No Mr Phlegm, the blabber!

Have no plans for today.  Been watching live concerts and was moved to tears for all the well wishes from the musical community.  Even watched a live-stream including a song written about/for me by Anne Sandstrom.  And, I watched everyone's set on Eagles Nest Revisited.  Music Medicine!

The catheter comes out Monday at 10:10 AM.  Won't do too much this weekend.

More to come!