Since My Last Post
I had a call from Anna, the scheduler for Northeast Urological. Since I missed my first treatment of BCG, she said she would provide a new schedule for my upcoming treatments so I get my round of six. Basically she said she would tack them on to the end of my current schedule. She did say she would follow-up with confirmation via email and snail mail. I also mentioned that I had a conflict on the 11th and was not able to make the treatment. Once again she said she'd tack it on the end. Cool.
Later that day I received two email confirmations; one appointment tacked on the end, but another for Monday the 9th. I had recalled that they only do BCG treatments on Wednesdays so I was semi-skeptical on the Monday appointment. So I was prepared to have this week's treatment on the Monday versus the Wednesday.
Monday came and I arrived at the office a bit before my appointment time. Upon check in, I had mentioned that I was there for my BCG treatment. The attendant looked puzzled as she looked at my 'chart'. Then she said, "They just want a urine sample today." I wasn't going to have an argument, but did mention that I generally provide samples the day of (with a few exceptions). So I took my collection cup and completed my task. On the way home, I realized that I left the specimen at the sink instead of placing it the depository cabinet. I hope someone sees it and puts it where it's supposed to be. (Someone did. I received notice from the lab that the sample was 'routine', meaning no blood or infection).
Later that day, I received the snail mail confirmation. I had to laugh. In the envelope was two appointment cards. Of course the one for this day was clearly marked 'urine drop off from 8AM to 3PM. The email had no mention of that. Now I have to chase down another replacement appointment. [By the way, Mercury is in retrograde currently].
Consultation with Dr Mossanen
After a consultation with Dr Mehta, his office scheduled an appointment with Dr Matthew Mossanen. He is affiliated with Mass General/Brigham and Women's. He has a number of offices, but according to Dr Mehta, procedures are administered in Boston (for joy).
My first consultation appointment was for 10AM in Foxborough. Given the time of day and the work commute, I gave myself two hours to get there. In preparation I looked up the address and reviewed the directions so I have it in my head what to expect. Of course traffic was typical and there were the slowdowns at various intersections of major routes, but generally moved along.
My GPS took me 495S to 3S to 128/95S to Route 1 (to Gillette). As the crow flies, pretty direct, but that part of the world has spotty internet/phone signal. The closer I got, the less I knew where I was heading. It was almost 10 and I wasn't there yet and GPS had me turn onto a street that was very residential looking. Par for the course, GPS decided to change the destination from 20 Patriot Place to 20 Patriot Circle (cul de sac with expensive homes, but no offices - or stadium). I knew I was lost so I called the office, got in the automated phone maze and finally got someone who transferred me to an automated system for directions...in Spanish.
I retraced my path to get back to route 1 hoping to see a human where I could ask for directions to Gillette. All pavement and roads, but not one human could be found or seen. So I drove on Route 1 looking for any signs to Gillette. In the distance I could see the stadium, but no clear path to get there. It was now 10:20AM. I was seriously contemplating turning around and going home, but by chance I found a turn that bought me into the massive parking lot. I meandered around and caught a glimpse of a sign that said "Health Center". Of course there were signs everywhere indicating that you can't park here. Finally I found a lot where it said parking for guests of Patriot Place. I pulled in.
I noticed a slight incline and many restaurants, bars, stores, etc. Then, hallelujah, Brigham and Women's sign. I found the entrance, made the path to pick up a mask and sanitize my hands. Found the information desk and was directed to the Urology Department.
Arrived to a small waiting room (not a soul waiting). I walked up to the attendant and said, "Sorry I'm late, but I got lost. I have an appointment at 10, but I know it's 10:30."
She asked my name, looked at the computer and said that she would check to see if they will still see me. YES! She told me to have a seat. I didn't wait long before a nurse called my name and had me follow her to the vital sign station. I had my weight recorded, blood pressure, pulse, temperature and answered some questions. I was then asked to follow her to an examination room where Dr Mossanen would be seeing me.
I was happy to have finally arrived but a bit anxious. It wasn't long until Dr Mossanen arrived. A young guy, very personable and engaging.
I had provided information from the questionnaires I completed online and we discussed my medical odyssey beginning from my breast cancer, multiple surgeries, AAA repair and finally my relationship with bladder cancer. Not having my daily allotment of coffee and having had a commute from hell, it was tough bringing up the dates/time frame/and various doctors involved in this medical chapter. But we were able to build a good time-line to help him understand my journey.
After having 4 TURBT's and one failed round of BCG, I had mentioned that I just started another round of BCG treatments. He agreed and supported my current plan, but he did discuss some options, if BCG doesn't work.
He provided a web site: BCAN.ORG (Bladder Cancer Advocacy Network). Quite informative. I will be checking out the contents and I also sign up for their newsletter. Dr Mossanen also talked about possible treatments which are chemotherapy, but unlike the chemo I had intravenously, this is administered like BCG. He gave me two drugs to read about: Gemcitabine and Docetaxile. Both are used to treat various cancers. Of course I gravitate to the side effects. So far I've been reading potential side effects when administered through the veins. A few things I've read about being inducted into the bladder had some side effects listed, but not as scary as those caused by intravenous.
Basically, if it came to this, I would be getting this in the Jamaica Plain location. I'd marinate, void and be on my way. Not happy about the location, but I'll worry about that later. There are always unwanted side effects, I might lose my hair again...but this time for good. And, other potential side effects that really are unpleasant. More reading/research is in order.
So Dr. Mossanen was in agreement with my current plan. He will obtain pathology reports, requested that I have a CT Urogram and have a tele-health visit in the Spring (after my BCG and next cystoscopy/TURBT is done. [At this point, I was thinking that today's visit could have been done via telehealth...grrr]
So I have more reading to do. More calls/correspondence regarding when and where I'd need the CT Urogram. Once again, the more you know, the more you don't know.
More to come!
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