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!