COLLISION!!!
Two Journeys Collide
This must have been pre-surgery ;-) because I don't remember feeling THAT good afterwards.
My dear friend, Deb, who was also in the hospital at the same time (we facetimed) with colon cancer. I lost my friend in June 2019, just as we were headed out on the Great Loop. She would have joined us for part of the trip along the Erie Canal and who knows where else. She is with us in spirit, but tremendously missed.
The bad news is that after one clear scan in February, the cancer returned showing up in my bladder in May. This involved another surgery (outpatient only) and the beginning of a treatment plan that will last three years. Thankfully, I will not have to have any chemotherapy other than a small dose that is injected into the bladder at the time of surgery. My treatment involves immunotherapy on a quarterly basis. This means that every 3 months I will have labs and scans done to stay ahead of the high grade cancer that could easily spread to my bladder and other organs. After the scans, if all is clear, I will receive three treatments of BCG (the germ that causes tuberculosis) inserted into the bladder by way of a catheter. The BCG has proven to increase the immune system of the bladder and causes protection against future cancer growth. However, the first induction of BCG requires six weekly treatments.
This is where the two journeys - The Great Loop and Bladder Cancer - collide. The BCG treatments are set up with a urologist's office, usually in a medical center or hospital. You receive all the treatments at this one place, so my treatments which began in mid-May wouldn't be completed until late June (6 weeks later). We received a couple of treatments in May while we were still in preparation mode for the Great Loop. But, when we left Point Bay Marina on June 25th, I still had a couple more treatments to go. This meant that when we arrived at the beginning of the Erie Canal in Waterford, NY, I would have to make the trip back to Burlington, VT. My awesome sister, Judy, was spending the summer in Albany with her son and his family (that's another story) and offered to drive me all the way back to Vermont and then back to the boat in Waterford. The final treatment occurred when David and I were at Brewerton, NY. We docked the boat for a few days and rented a car to drive six hours back to Vermont for my last of 6 treatments. We could continue our Great Loop journey, but every three months would find me flying or driving somewhere until all the treatments are administered.
The next feat was to arrange doctors and BCG treatments along the way of our journey. It was difficult to say the least, to know where we would be when exactly, and to foresee which city would be best to find a doctor who had access to BCG and would take me on as a patient for the short period of time needed to receive the treatments. Grand Rapids, MI was one of those cities where we found such a doctor who happened to personally know my urologist in Vermont - what were the chances? When my scan in August (in Vermont) turned up another tumor in my bladder, it was an easy transition to have the surgery done in Grand Rapids as the two urologists agreed to such an arrangement. Surgery went well, but by the time I was ready to receive the next round of BCG treatments, David and I would be in the Chicago, IL area. I miraculously found a bladder cancer specialist (Dr. Piyush Agarwal) at University of Chicago Med that performed an additional surgery/biopsy to be absolutely sure the cancer was non-invasive and not showing up in the muscle tissue. Success! He prescribed another six weeks of BCG, but sadly, due to the worldwide shortage of BCG, he had to refer me to a medical center outside of Chicago.
The upside of this is that the Dupage Medical Center is not downtown Chicago, but in a suburb which makes traveling there much easier and less stressful. The down side is that it takes time to become a new patient, schedule a consult, receive paperwork, and then schedule weekly treatments. Due to the fact that this was a recurring tumor, I was a candidate to receive the full six weeks of BCG once again. Thankful for that, but it meant that we could only travel so far south on the rivers so that the drive back and forth would be no more than 6 hours one way. We traveled from Chicago as far as southwest Kentucky with the boat and found an affordable marina to spend an extended period of time. Green Turtle Bay Resort has been a fantastic place to call home for the time being, but the weekly trips back to Chicago are not what we had anticipated when we began this wonderful journey on the Great Loop. My treatments began November 5th and if all goes well and there are no side-effects, my last treatment will be December 10th.
You can be sure that on December 11th (weather permitting, of course) we will be on the boat headed south as quickly as possible!! I had hoped we would be in the Gulf of Mexico by the end of November, but at this time, it will most likely be mid-January before we begin our travels in the Gulf. The weather in southern Kentucky this time of year is usually mild and in the 60s-70s. This year, of course, we are experiencing record cold spells so we have had snow and icicles hanging from the boat already in mid-November and temperatures down into the teens at night. We purchased two more heaters to make sure we stayed warm and the boat doesn't freeze up and all is well for now.
As you can see, our adventure is actually a collision of two journeys: The Great Loop by boat and The Big "C" in whatever manner the Lord sees fit for us. We appreciate your prayers and thoughts as we navigate both of these journeys. Our next challenge will be finding a urologist in southern Florida where I will receive my next round of BCG after scans are done at the end of January back in Chicago.
Want to know more about the Great Loop? https://www.greatloop.org/
Want to know more about bladder cancer? https://www.bcan.org/
Follow us on Facebook. htytps://www.facebook.com/selah.way.5
Comments
Post a Comment