And Then Everything Changed

Last Thursday, 8/11, I had a PetCT scan at the Maplewood oncologist's office. This set off a chain of events that is only just settling down now 5 days later.

To back up, Dr. W. recommended this PetCT scan as a check to make sure that he had a clear picture of the area that he'd be treating, and also to see if there was anything that Mayo had missed.

Dr. Vic called me at about 7pm that same night. He'd stayed late to get the test results and was calling me personally. He said that in addition to the cancerous mass and lymph nodes on the left side that they'd known about, there were also signs of lymph involvement on the *right* side, as well as spots noted on the lungs.

You might recall that I mentioned earlier when Urothelial Carcinoma spreads and metastasizes in the entire body, it usually moves to the liver or the lungs.

So I'm left with only that as a backdrop to my first night of a relaxing weekend at the cabin before starting treatment.

Dr. Vic recommends, and schedules, a bipsy for the following Wednesday at United hospital in St. Paul.

The next morning, I start making phone calls: to Dr. Hunter, my Mayo Urologist; to Dr. McDougal, my Mayo medical oncologist; to my old oncologist, Dr. Grampa; to Dr. W (who ordered the scan), etc. Nearly everyone is out of town. Dr. McDougal, the mayo oncologist, is around and gives me some armchair analysis of the situation. He hasn't seen the scans. The only person that has (Dr. W.) is out of town.

Through assistants and fill-in doctors, we learn that Mayo won't believe Dr. W's finding unless the see the scan for themselves (they do this with any outside tests or scans) which mean we need to get a disk to Rochester from Maplewood. But maplewood doesn't apparently have the ability to FedEx things. They volunteer to mail it, which means it should be my doc's hands Rochester in about a week. They say that Mayo always pays for it then they overnight it. I volunteer to give them a credit card number and they say they can't take it: Mayo will pay for it, they always. I call my Mayo and no: they don't pay to have things to sent to them, the sender pays for it.

I call Maplewood again, as near to livid as you're likely to see me. I make it clear that I really don't care how it happens, but the CD of the scans needs to get down to Rochester and, if need to, I will leave the cabin in central Wisconsin, drive to Maplewood and take it to Rochester personally. Which appears to be the only way, since they don't have the ability to FedEx things. Mention words like "terminal cancer" enough times -- surprisingly, these words have very little effect on people who work at oncology offices -- and eventually they find someone who has the ability to make these things happen.

The disk gets sent on Friday, and is due at Mayo in Rochester on Monday. It is possible, but not likely, that it will get looked at by the physicians on Monday. Tuesday is far more likely.

Over the weekend I try not to think about the various possibilities, which include the fact that the Pet CT is a highly sensitive scan -- many would say over-sensitive --- and could be throwing a false positive. On the gauge of possibilities, the needle can now swing freely through the full spectrum of possibilities ranging from NO CHANGE AT ALL to COMPLETE CHANGE.

The scan arrives at Mayo on Monday, though the CD needs to be loaded in to Mayo's systems. This does not happen on Monday.

On Tuesday morning I make my rounds of calls again, now leaving messages for both of my active Mayo docs. Of Dr. McDougal's doc I ask if the disk is likely to be read today "or this week" I say, being more sarcastic than I'd intended. She doesn't catch the sarcasm and answers as if it was a reasonable question. "Oh, I'm pretty sure it will get read this week," she says with complete honestly. Mayo is amazing for some things, but they have processes that need to be followed, at a fixed speed. It is impossible to get them to move quicker than is normal. You won't startle them or surprise them. They've seen it all before: your dire situation is identical to the dire situation that they dealt with yesterday, and the day before that.

On Tuesday morning I get a call back an hour or two later from Dr. McDougal, the Mayo oncologist. He tells me that it is certainly urothelial carcinoma. There isn't any need for a biopsy. This is partially because it is such a textbook presentation for Urothelial Carcinoma. They also feel that the possible side effects for a lung biopsy weren't worth the risk.

This changes the entire game plan. Radiation is no longer an option because one can't irradiate lungs without destroying them. Surgery is no longer an option since it the cancer is currently circulating freely in the bloodstream.

What this means is that I am left with chemotherapy as my only option, and a good option it isn't. Chemotherapy works by flooding your entire body with toxic chemicals. My (up until a few days ago) chemo plan had called for a relatively light treatment of chemo planned along with a medium dose of radiation, followed by surgery. In this scenario, radiation was primary and chemo was supplemental.

The new plan is still underdevelopment, but will likely call for a 4-week chemo cycle: 3 weeks on and one week off. This will go for 2 cycles (2 months) and then I will have a CT scan to see if the affected areas have gotten better, stayed the same, or gotten worse. The chemo meds will be adjusted accordingly, and then I'll have more rounds.

If the cancer continues to be aggressive (and remember that this grew from nothing to aggressive spread in less than 6 months) then more and more chemo may be needed to fight it. And chemo may not be enough. There may be a time (and it may come in the next year or so) when chemo would be like baling out a sinking ship with toxic, destructive chemicals.

The best case scenario is that chemo destroys of the cancer and and I go through 2 rounds (2 months) of chemo. Even if it is all gone, they'll still give me at least another couple of weeks of chemo, they said, to make sure. The (slightly more likely) option is that they will do another 2 month round, look at that first scans, adjust the meds and give me another 2 rounds, followed by another scan. I'm looking at 2 months (plus a few weeks) of chemo at a minimum and 4 to 6 months is likely. In this time, my hair will fall out, my hearing will get worse, my fingers and toes will get partially numb and tingly and I'll be no fun to be around whatsoever. THese effects may go away and may be permanent. THe hearing loss and louder ringing in my ears (from last time) did not get better. THe tingling in the fingers did go away after about 6to 8 months. This is a longer cycle (and potentially an endless cycle) so we have no idea how it will affect me and if it will be permanent. Tell a musicians that he may only have another week or two before his musical skills will start to go sharply downhill -- potentially permanently -- and he'll be pissed, yeah.

I know there are instances of people beating cancer. Before I began this accidental journey I thought that "cancer" was one type of thing. It turns out that there are many different types of cancer, and not just different because of the different areas that they affect. They are different in the way that they grow, how fast, where they go, what drugs treat them, etc. I appreciate people's positive Cancer stories (and I am glad to know that fellow survivors have found some peace from the disease) but what I really need are positive stories related to my type of cancer, of which I have so far found none. Urothelial Carcinoma, also called Transitional Cell Carcinoma, or TCC, is aggressive and deadly. When I first started looking into it, every story I found was depressing and ended poorly. I stopped looking into it.

Positive thoughts, prayers, healing energies and anything you've got to spare are all helpful. My bladder tumor was shrinking and everyone was amazed at the outcome. Perhaps ironically, the bladder itself is clean as a whistle, I believe due in part to the outside healing that I got. If people will be kind enough to direct their healing attention systemwide, I believe it would be helpful. We are close to the limit of modern medicine vs. cancer. As options are removed from the list, chemo, luck and hope are all that is left.