Final Scan

Not my scan, (for one thing this is a man), just an example.

Thursday, August 4, I met with my oncologist to look at the final scan. I have to admit, I hardly thought about it. In fact, I had zero stress about the results at all. Mostly because the midway scan had been so tremendous and showed us how well the chemo was working. It was not possible that it could be bad news– I can’t actually remember a time during this whole process when that was the case or when I was so confident.

Still, looking at the picture on the screen is always scary. Because the inside of a body is incomprehensible. First, the kidneys are so high! They are where the lungs should be (at least the lower part of the lungs) so when there was this lit up spot on both sides, I had trouble understanding that wasn’t anything to worry about. The kidneys are going to light up with dye. Above the kidneys, though, it was just blank. No outline of the lungs, nothing. Nothing. Clear. Where before the lining with its insidious nodules had been a faint outline, there was nothing I could see.

Henry Vandyke Carter – Henry Gray (1918) Anatomy of the Human Body (See “Book” section below) Bartleby.com: Gray’s Anatomy, Plate 1035

Then there is the peritoneum, that crazy lining that covers not just my reproductive organs but also the bladder, bowels, intestines, liver, stomach, spleen… I won’t pretend to understand it– Here is what wikipedia has to say. Reading it makes me wonder what all will happen in surgery, but also makes me happy that my oncologist is only talking about my bowel lining. I can keep most of my organs– all but the reproductive ones.

Again, the bowel lining on the scan was “dark”– I couldn’t make it out apart from the organ itself on the scan. That is good news. And although there are tumors remaining, and they have not reduced in size much since the last scan, they are calcified.

Calcified is good. Calcium can’t get in there unless the tissue is dead. There are no active cancer cells if the tissue is dead. All the tumors we can see are calcified.

We killed a lot of cancer. A lot. All the cancer a scan can see, and hopefully even more.

Because there is cancer that the scan cannot see, only a human can see with the aid of who knows what, and only a human can remove, with skilled hands and possibly even robotic equipment, we will have surgery. She will remove the lining of the lung and the bowel, the peritoneum, the omentum, whatever linings and flaps that can host future cancer or where the cancer might be hiding. The lung and bowel operation is called “Stripping.” Those poor organs will be left naked in their cavities, and I’ll have to work to keep them healthy and happy.

And that comes to the second part of this story. The surgeon. The reason I was distracted at this happy last meeting with my oncologist. Because on July 30th my surgery plan, which was to happen on August 16, fell apart.

I had called my insurance company when we knew we wanted to do the surgery at the Mayo Clinic back on June 6. This was a month before my final chemotherapy treatment. I had one question: What is the coverage for this surgery? I have my notes from that conversation– I talked to Kelsey, she looked everything up, and she said since I had met the out of pocket maximum for the year, the surgery was covered 100%. We both marveled at such a thing. I moved forward and made an excellent plan.

But what she told me was wrong. One thing she said was that I absolutely needed to get pre-authorization. Not getting that could result in my being responsible for the whole bill. So my oncology office got into gear for authorization: but they got back a form saying my plan was “open access” and I didn’t need authorization. I have that communication, too.

Insurance might as well be a rolled up scroll someone signed with a fountain pen and locked up somewhere inaccessible.

So it was in double checking the pre-authorization information that I learned, through a series of phone calls to insurance company, my oncologist, and Mayo, and a series of different answers, that the authorization person at Mayo said: it looks like because the Mayo Clinic is out of network so you would be responsible for another $5,000 worth of deductible and 60% of the bill. I called the insurance company again and they confirmed this statement. The crushing weight of that debt and what it would mean to me in coming years almost undid me. Also, the idea of making a decision about life-or-death surgery based on money was so depressing I can’t even convey it. It was a bad weekend.

But I had done research. I actually had a list of six gynecological oncologists not at Mayo who are top notch. I will spare you the details, but after four conversations, and picking another gyn-onc they said was in network but I determined from my own research was not in network (they had the wrong hospital affiliations for her on file), I found a surgeon. One of two (both at the same practice) who were on my list and in network.

And after another three frustrating days which included crying on two answering machines trying to get assistance and feeling a clock ticking loudly in my head, all the forms and records necessary got to the new surgeon’s office. I have an initial appointment on August 16, the date that was set up for my surgery at Mayo. And although we will be probably doing the surgery in the seventh week after treatment ended (3-6 weeks is optimal), all the cancer is dead, remember? I am not worried about that week. I have utter confidence in the new surgeon, and her hospital is only one hour away, not 3 1/2, so traveling home after surgery will be significantly easier. In fact, everything about it will be easier. Because it is close, one day next week I’ll drive to the office to hand-deliver the disk of my scan and the forms I need to fill out before my appointment.

As I write, I’m looking out on our big pond. The big pond has been a mess this summer. Early on, it became covered with green algae. But then we had a deluge of rain and water rushed in from town through a giant culvert, and all the algae was washed away. It looked so healthy and great. Now though, red algae has formed or grown on the surface. The cattails along the edge are dead, probably from the high water levels earlier.

I can’t help but think of my peritoneum. We’ve flooded it and it is clear. But we need to get in there before the red algae can move in. It’s the final step. I don’t think there will be any more scans, and there won’t be any more chemo (there was talk of two more rounds after surgery). My CA-125, the primary marker, is 18.7 (anything below 35 is normal). It has been below 35 since June 1, and has continued to go down bit by bit. We will be watching that number in months to come, and hoping it stays down. Every other single number on my blood tests was in normal range. I feel, personally, like the cancer is gone. Aside from persistent neuropathy and getting tired quickly, I feel healthy. The cancer is Dead. We’ll now do what is needed to remove its habitat and keep it out of my body.