Some Semblance Of Order...Possibly?

Housekeeping

Since my last post I managed to catch some 'crap' going around.  I tested negative for Covid (twice), but this really threw me for a loop.  I began to feel poorly on New Year's Eve (day) and it went down hill from there.  The headache, the chills, the aches, the runny nose, the loss of appetite and general feeling of sh*t came on strong and lasted for a few days.  So I had yet another crappy holiday (minus Christmas with good friends).  

While being benched, I was fortunate that so many were willing to provide anything I needed to return to good health.  Other than myriad remedies and home grown brews, a friend dropped off some homemade chicken soup (very hearty) and fresh baked goodies.  There is something to said about the chicken soup cure. Each day now is better than the previous, but I do have a lingering post nasal drip and sporadic coughing spells.  Yes, this too will pass. 

I was able to reschedule my January 11th appointment to Monday, January 9th.  In addition, I have a new appointment tacked onto my BCG schedule that will bring me out to February 8th.  I logged on to my patient portal and completed all the questionnaires required for my appointment/consult with Dr Mossanen in Foxborough, next Wednesday.

Another Journey

After last week's false start, it was recommended that I provide a urine sample on Tuesday (which I did). Once again it was to be tested for the presence of blood in the urine.  Since the BCG vaccine cannot be introduced to the blood stream, it's imperative that I am not bleeding.  I heard nothing from the office so I felt pretty confident going in today.

I arrived and after check in and a re-scan of my medical coverage cards, I was told I had a credit so no co-pay.  (I'll take that.)  I was asked to provide yet another sample, which I gladly provided.  After which, I waited to be called.

My name was called and the nurse walked up to me and asked if I was feeling OK.  I know I had my temp taken and aced my covid SAT, but did say that I had a cold last week.  She said, we found some blood in my sample.  [CRAP! again].  She said he was going to talk to the doctor for guidance. Not long after a different person called my name.  I expected them to say it's not happening today, but she said,"Follow me."

Walking to the examination room I was tested on my DOB, name and address [Aced it again].  Prior to entering the examination room, the Nurse Practitioner, Kristine said, "I'll be right with you."

I was instructed to drop trow and sit on the table covering the uglies with picnic table sized napkin. Kristine came in and I inquired why I was getting the BCG when there was blood present in the urine.  She said, "It was microscopic.  You have bladder cancer. That would be the normal result, so the BCG induction was cleared to proceed."  I was ambivalent, but was eager to get this show on the road.

As usual, the procedure is quick, but very unpleasant.  Some administer it so much better than others.  But I was on my way.  At this time I didn't have my rescheduled date so I indicated that I might not be back for 2 weeks. [But I'll be back Monday].

I went home to marinate and I made the two hour mark. I'm attributing this to my having only one cup of coffee.  I'll have to remember that next time.

More to come!

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!