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The news is finally out and it is very good news indeed! After chasing my urologist literally halfway across the country and pushing the schedule out a few months, I finally had my cysto on Thursday, August 2.
The news was welcome - "Your bladder looks fine." ALL CLEAR, 10 years and 2 months after the last surgery.
This is a good milestone for Bladder Cancer. The biggie is two years, and it progresses like this: Probability of Bladder Cancer recurrence within 2 years is about 60%, from years 2 to 5 it drops to about 8%, then about 5% for years 6-10, and now after 10 years less than 2%. For Bladder Cancer it NEVER drops to zero.
Technically I can now claim terms like "remission" and "survivor." But with annual cystos for life, it does not feel real to me. Not to say that I fear a recurrence. My new lifestyle of lower weight, healthier diet, more exercise (well, more than zero anyway), and daily baking soda - gives me the confidence to live as normal, not fearing a recurrence. And if a recurrence comes, there's almost no chance of it being life-threatening - as long as I continue to do the annual cystos to keep it from getting out of hand.
Will I continue to travel to Oregon and use Dr. Hopkins? Most likely I will. It turns out that Dr. Hopkins was recruited by the Asante Medical Group in Eugene, Oregon to replace their sole urologist, who retired shortly after Hopkins took the job. Now their plan is to build an all-new Urology practice around Hopkins - new facility, new doctors, new physician assistants, additional nursing staff, the whole works. How does Dr. Hopkins feel about all of this? Surprisingly not great. The current patient load is taxing him physically and mentally, he loved living in Utah where he was born and raised and attended school, and he does not like having to adapt to new things. He told me the move was not for economics or working conditions or anything like that, but more for family - so that their younger children could grow up in his wife's home state and get a different experience from their older siblings. He would have been happy to stay as things were.
I have to side with the wife here. His former practice consistently treated him poorly - moving him from partner to employee, increasing work hours and decreasing compensation, and generally being only semi-competent administratively. The new practice, as it is built, will provide him the opportunity to set the stage for facilities and equipment, the quality of service, and the general tone of patient care. He does believe it will ultimately be a different and better Urology practice than any within a couple hundred miles. But in the meantime he is tired and stressed, and it did show on his face and in his demeanor. I expect he will start to enjoy it within the next year or so as he gets more help and relief, and ultimately it may be truly great.
In the meantime the scope and monitor were the latest and greatest (much better than what they had in Utah), the staff was on point, and after some initial confusion (they had scheduled me for "new patient consult" rather than cystoscopy), we got the job done quickly and with good results. I was very happy with the overall professionalism, especially with the workload they had. So for both myself and Dr. Hopkins, we should both be focused on looking forward. I certainly plan to do so!
It has taken me a few months to write this post, mostly because I needed time to process it all and deal with it, letting events play out. And because it still pisses me off. And because life has been busy and basically good these days! And now here is the story: On a particularly pleasant day in April I was wrapping up work with some HVAC contractors who had just completed installing a brand new (and expensive) air conditioning system. My wife called me to the phone, "Dr. Caputo's office needs to talk to you."
"Never heard of Dr. Caputo," I replied.
She insisted, "You need to talk to them."
I wrapped up quickly with the contractors and took the call. A nice young lady, let's call her Trish, from Dr. Caputo's office began to explain to me that Dr. Caputo had a conflict for my cystoscopy appointment on May 17, and she needed to help me find a new appointment time. "There's only one question," I asked, "Who the hell is Dr. Caputo?"
"He's your urologist," she replied.
"No," I said, "Dr. Hopkins is my urologist. I have never heard of Dr. Caputo. There must be some mistake."
"Oh!" she exclaimed. "Dr. Hopkins moved his family to Oregon last year. Dr. Caputo is your urologist now. You should have received a letter..."
At this point the conversation became extremely graphic and profane (on my side) and will not be repeated here to preserve brevity and to keep from melting your monitor. I explained in no uncertain (and very colorful terms) that I had NOT received a letter about this, nor had I received a letter when they merged with Summit Urology, nor had I received a letter when Summit Urology was acquired by Grainger Medical Group, nor anything else important, but that I ALWAYS received letters containing bills to be paid. I also explained that I was planning to travel over 1000 miles to keep an appointment with Dr. Hopkins, and that there was no @#%$%$# way I was going to do so for the mysterious and unkown Dr. Caputo, whose very birth and ancenstry I may have called into question. And that if she wanted to reduce the pain she was currently experiencing, be rid of me, and satisfy her action item, she needed to produce Dr. Hopkins' current contact information and location and that she had better do so quickly. Relieved for an escape from the torrent of abuse, she stammered out the name of his new practice and a city in Oregon (as it turns out, the wrong one, but nearby the right one), and we parted ways forever.
I was more than a bit perturbed by this turn of events and had to take a few moments storming around and breaking random things in the house, trying to calm down. Even so, it was quite some time before I could muster the calm to begin an extended period of Googling and phoning, insurance cross-checking and medical records requesting, HIPAA form signing, and further arguing with the incompetent practice in Utah. In final fact, Dr. Hopkins is now practicing in Medford, Oregon, and is currently the sole urologist for the quite large Asante Medical Group. They did take my insurance without issues, assimilated most of my records from Utah, issued new orders for PSA test and CT/IVP scans, and scheduled an appointment for me in early August.
While this date represented a delay (my cancer-free anniversary date is 31 May), it afforded me time to figure out where it was and how to get there in a reasonably efficient manner. Unfortunately there was another problem to solve. When I retired in 2014 and adopted a nomadic lifestyle full of romance, adventure, and travel, I noted that recurring medical care was an issue. We ultimately chose to return to Utah once per year and do all our medical stuff at once, usually in May. But over time, the best doctors retired or quit, the good ones moved to other areas, and only a couple remained. With Hopkins gone, the primary reason to go to Utah for anything other than social connections disappeared. We needed to find a place that would take our insurance plan and work with us to get recurring medical service for routine physicals, dermatology, ophthalmology, and for my wife - gynecology exams. Plus related lab work. Thankfully the best man at our wedding (nearly 35 years ago) is a highly respected, Mayo-trained physician working in a large medical group in his hometown of Willmar, Minnesota. He graciously agreed to host us for an extended period in his home and also arranged for us to get appointments with top doctors in each type of practice we wanted, except for urology. They have a top-notch urology staff, but I prefer to stick with Hopkins.
The upshot is that we spent a lot of time this summer in central Minnesota, ate a lot of fresh walleye, visited a lot of new-to-us places, and re-set almost all of our medical care with a new medical group that gives us basically one-stop service for everything. That all went relatively smoothly, and we got a lot of things done that had been postponed, and we got to spend a lot of time with our friend and his family. So the good news is that the Caputo incident gave us the impetus to re-baseline our medical plans.
The bad news, and it pisses me off to this very day, is that Summit Urology - Grainger Medical Group would have been perfectly happy for me to travel all the way to Utah for the sole purpose of keeping my appointment, and then announce that they had switched docs on me. It was the grace of God that Caputo had a conflict that necessitated a phone call. Probably kept me out of the Salt Lake County prison system, as I suspect that I may not have reacted in a calm and mature fashion on the spot.
But, as they say, all is well that ends well. And the new medical group has treated us well and taken good care of us. We plan to return each spring and get our routine stuff handled there. And we need to figure out how to get to Eugene, Oregon once per year for cystos. I will save the details of the first visit there for the next post.
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