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.

A Few More Delays

(Cartoon found at: http://xkcd.com/933/ - thanks to Brother Kev. for the find)

Today my mom and I went to meet the radiation oncologist, Dr. Wangchungtonight, and the medical (chemo) oncologist, who shall not earn a name.

To back up, the sole reason that I'm now finding a new radiation oncologist is that radiation needs to be given 5 days a week for 6 weeks. Mayo is amazing and I'm sure that they would do an amazing job. However, I wanted to find someone local that they recommended, so I wouldn't have to move to Rochester for 6 weeks. Dr, Wangchungtonight was the only guy that they could think of in the cities. Unfortunately, he's in an (otherwise) dumpy clinic in northern Maplewood, next to a mall. I have become snobbish in my health care providers, certainly.

Dr. W. seems like a great and patient guy and I do feel confident that he can give me the kind of care that I need. He wants to make sure that there isn't any other cancer hiding anywhere, so he wants to give me a full-body PET-CT (with contrast) tomorrow. Compared to and MRI, A CT scan is more like the magic trick where the magician takes a hula hoop and passes it around the body of a floating assistant to prove that there arent' any wires being used. Though this hula hoop is more like the size of a truck inner tube, and costs millions of dollars. A CT scan for the patient) is quiet, painless, simple, and non claustrophobic. The MRI scan is incredibly noisy (earplugs are needed) and you are stuffed into a torpedo tube that (for me) is smaller than the diameter of my shoulders. I'm not normally claustrophobic, but I need to be medicated with valium in order to get through a full-body MRI.

I had a bad reaction to the CT contrast dye that they used a few years ago. This allows them to see everything much more clearly, but it is useless if the patient dies of anaphylactic shock on the exam table. Clearly I haven't yet, but my reaction last time scared them enough that they said: "never let anyone give you CT contrast again." And so I haven't. Apparently, PET-CT is different enough that the contrast dye is different. I'm not really clear on what the difference is between a CT and a PET-CT.

So we'll do that tomorrow. If I break out in hives and have a hard time breathing, they'll pull the plug and we'll try again another day without contrast.

Today was supposed to be (or at least I thought) my radiation planning session. This was supposed to be a 3 hours appointment where I meet with the Radiation Oncologist and get scanned in preparation for the actual radiation. The doc now wants to do the scan first, make sure there is no more cancer  (a good idea) and then from there create his plan of where he will irradiate, using the CT as his template.

So the current schedule is that I'll have the Pet-CT tomorrow (Thursday) and meet with Dr. Wangchungtonight on Tuesday for the radiation planning session (a 3-hour appointment where they will permanently tattoo me with small dots on my abdomen so that the radiation can line up exactly every time. It takes Dr. W. about a week to get his radiation plan together, so this now means that I'll start radiation a week from Tuesday, or on the 23rd of August. I am hoping that these delays (that I can't seem to find any way to bypass) will not mean that the cancer spreads further.

I also met with the medical oncologist (the guy that gives the chemo drugs) today. This guy I did not like, and I found the combination of his pointless chattiness, hard-of-hearing-ness and ineptitude with computer-based ordering and records to be frustrating. He had on a ridiculously shiny striped short, and small black, thick-rimmed reading glasses that looked like miniature Harry Potter glasses. He also hit one of my major pet peeves with doctors: the question of "so why am I seeing you today?" Because he doesn't actually know. Because he hasn't cracked open the records.

On the other end of the spectrum, Dr. Wangchungtonight recited my *entire relevant medical history from memory*, without looking at a single note. And this is a very long list, at this point. He told it like a story. I was stunned. There were things that *I'd* forgotten, even. He had the order down, names, dates, diagnoses, outcomes, everything. I feel good that if you tell Dr. W. something, he will remember it later.
The medical oncologist that I met with today -- that I have decided I will *not* be working with -- will not be appearing enough in this narrative to earn a name.

It looks like Chemo and Radiation will begin on that same (5-hour) day, 8/23. This will be nearly a month after the recurrence was diagnosed , and I am painfully aware of the clock ticking away.

Fellow geeks and nerds: Blog is now Mobile Friendly

Geek/tech update: I just noticed that blogger has a mobile/smartphone-friendly checkbox that must be activated on my end.\ as the blog administrator. Now, any any all who access this blog with a smartphone will automatically get a much easier-to-read version.

More later today after my 4-hour oncology marathon with the new local oncologists, Dr, Wangchungtonight and a new guy that I haven't met.

Exit Ahead ___ Miles.

Thanks to Tanya B. for the find!

Everybody Wang Chung Tonight

Another long —though productive —day at Mayo today, accompanied by Mom and R.
First stop was the radiation oncologist, the cancer doc that specializes in the radiation part of the treatment. This doctor I will call Dr. Quidditch. She laid out a plan of 28 "fractions" of radiation, which is to be done over 5 weeks and 3 days ( treatment is given 5 days a week). I will get intensity modulated radiation therapy (IMRT), which apparently is some super-special kind of radiation that only irradiates (mostly) what they want to irradiate. I asked whether this is something that could be be done in the cities, or if I needed to come down to Mayo. See, I do want the best care possible, but the idea of moving to Rochester and living in a hotel for 6 weeks seemed more depressing than the treatment itself.

Dr Quidditch said that there was one guy that she would trust on the cities to do it: Dr. Wangchungtonight. (His name is actually even more ridiculous than that, and I started laughing whenever I said it — and R. had to leave the car he was laughing so hard — which probably made me sound like a prank caller when I was talking to his scheduler.)

So, Dr. Wangchungtonight will be my Radiation oncologist. Another oncologist—yet unknown—will do the chemo, which falls under the umbrella of "medical oncology". The new, second oncologist will be different from my previous chemo oncologist because it's best to keep both chemo and radiation at the same location. So I am extra special because I have 2 different *kinds* of oncologist.

The whole circus is planned to start a week from Wednesday, 5/10/11. Chemo and radiation will run for 6 weeks. After this I'll be given about 4-6 weeks to recover and let my blood cell counts up to where they should be again, and then surgery is planned for (likely) the week before Halloween.

I also met with a Neurologist, Dr. Harold Whitecastle, who missed his calling as a comedian. If he had worn a red foam nose, he could have given Patch Adams a run for his money. He said that the back pain was most likely not nerve damage, and that it might be related to the cancer or might be "mechanical" rather than neurological. He essential said that it would wither go away or not. Dr, Whitecastle—working with the Urologist and Radiologist — verified that it was not internal bleeding, diverticulosis or another lurking tumor. Pain of this type is sometimes common with tumors in this area. In it seems to be lessening. It is not gone yet, but maybe it is is on its way out. In any case, its not anything more than annoying, which is some comfort.

Wednesday, I meet with Dr. Wangchungtonight for a 3 hour intake appointment were I will get my Radiation Tattoo! more on that on Wednesday.

Pain, Pain, Go Away

I have been in ever-increasing back pain since shortly after the biopsy. If untreated, this pain prevents me from sleeping and has had me near to tears on many occasions. The docs so far don't think that there is a link to the biopsy itself. I realize they're experts and all, but they did put two enormously long syringes in me, through muscles and deep inside my pelvis, skirting around all of the stuff that's in there.

There may be no connection at all, but I cannot overlook the possibility, personally. I went to see my General Practitioner Doc last week about the pain. He agreed that there might be a cause-and-effect thing going on with the biopsy, but couldn't be sure. He gave me a prescription for Vicodin. No, you can not have any. They are mine: all mine.

I am learning that this pain is the sort of thing that doesn't really surprise doctors then you have serious shit going on with your body. Severe back pain? Yawn.

I don't like popping highly addictive narcotics, and less so the idea that the pain may continue for the next several months and beyond if it is linked to the cancer.

I am afraid that before the year is out I may emulate a few of Dr. House's traits: cantankerous (I'm already that way, lately), addicted to painkillers (time will tell) and dependent on a cane. Oh, joy.

Updates, Oncologist, Prognosis.

Another visit to Mayo today. The news was mixed, some better than expected, some worse than expected.

I met with the Urological Oncologist (cancer-doc). We discussed the details of the chemo. This (from my perspective, at least) is better than expected.

The current plan is that I'll have 6 weeks of chemo (this is far less that the 12 weeks that was originally forecast) and I will be on a reduced dosage of Cisplatin. Cisplatin is the (fairly evil) drug that causes numbness and tingling in the fingertips and hearing loss. A fabulous double-whammy for musicians. I experienced both side effects last time and, while the numbness slowly went away, the hearing loss did not.

It makes me happy that I'll be getting a smaller dosage of Cisplatin, but the rounds will be different.

For reference, here's what I did before:

Week 1 (Monday): Cisplatin and Gemcitabine
Week 2 (Monday): Gemcitabine only
Week 3: No treatment.

That was one "cycle" and then the next week I'd get treated with both meds, etc. I did 3 cycles before, or 9 weeks.

Last time around, I was feeling about 90% normal at the end of the cycle, then the next would knock me down again. Cisplatin was so toxic that i only got it once every 3 weeks.

This time, I will be treated *every week* for 6 weeks without a break. It will be a lower dose, but in the end may be an equivalent amount of Cisplatin to what I received before -- that remains to be seen.

In addition, I will also be doing simultaneous radiation therapy, 5 days a week, for about 2 hours each time. The combination of these two will make me incredibly tired, I am told. It will be a very long 6 weeks.

The start date of Chemo is still uncertain, but most likely mid-August.

After the meeting with the oncologist, we went to see Dr. Hunter, a followup just to put everything in perspective and answer any more questions.

I learned that my cancer is currently classified as "Metastatic Urothelial Carcinoma", which means it is a stage 4 cancer. This is the scary level that a person does not want to reach: as high as it goes. Usually stage 4 means that the cancer has spread to the lymph system, as it has in my case. The important thing, Dr. Hunter points out, is that it has not spread to any other organs.

Based on what they know about this type of cancer (and this team would be among the world's leading experts on this type of cancer) it moves fast, grows quickly, and is tenacious. They warned me a year ago that it would likely crop up again, most likely in a different area. And it has. When pressed for further information, Dr. Hunter said that areas most at risk after this would be the liver and/or lungs.

Chemotherapy and radiation are planned to either keep the cancer in check or to eliminate it altogether. The best case is that these two treatments destroy the tumor. As a fallback, surgery (which will leave permanent side effects due to nerve damage and will leave me walking with a cane for the rest of my life) is an option. The worst case scenario is that tumor would be deemed inoperable post chemo/radiation. This is always a risk when using radiation therapy, as radiation destroys the tissues, making them fibrous and dangerous or just plain impossible to operate on.

The Mayo physicians are talented, inventive and knowledgeable: but they still need to follow the same basic laws of physics and biology as everyone else. If an inoperable aggressive cancer is left to its own devices... fill in the blank.

I'm harping perhaps too much on the negative possibilities, but I can't help but turn them over in my mind.

I am now looking forward to starting chemo/radiation. The sooner I start, the sooner I'll be finished with it. One step at a time.

Making a list, checking it twice

It seems odd to say that I am experienced at this. It all feels eerily familiar, like deja vu that really isn't deja vu at all.

The chemo hasn't started yet (and wont for at least a week, I figure) but I have benefited from what I learned before. I'm assuming (perhaps erroneously) that it will be the same chemo drugs and thus will affect me in about the same way. My appetite was unreliable and certain things turned my stomach where other things tasted really good. I was sensitive to strong dyes and perfumes, but found that "natural" essential oils and such were fine, whereas artificial chemical-y scents (like conventional scented laundry soap) made me occasionally nauseous. I also learned the importance of vitamins.

Based on this—and more—that I have learned, I have been in preparation mode for the last few days. I cleaned out my fridge yesterday and have been washing everything I can think of -- blankets, dog beds, etc. Today I went shopping and spent a whopping $165 at the co-op on vitamins, etc. Last time around, organic food and vegetables are the only thing I could eat -- in everything else I could smell the chemicals. In that way, the cancer does give me unreliable super-powers, I have a glimmering of an idea of how sensitive a dog's sense of smell is.

It feels a little like packing for a trip. There is none of the excitement, but the same sense of anxiety that one gets, worrying whether they've remembered everything. Luckily, I have at least a week, but I'm starting to plan and act as if I'm on it already: I need to avoid sick people (the chemo drugs knock down a person's immune system) and plan ahead for things that I won't have the energy to take care of . I am a poor sickie, and tend to resent he need for care, so I am doing as much of the prep work as I can. Already, alcohol and meat don't sound good anymore.

Kaia (my 11 year old retired racing greyhound) is worried. Honestly, I think I have known that the cancer was back for a month or two. Kaia has been licking my hands, which she really hasn't done since I went through chemo before. Dogs can tell. She was a trooper before: extremely patient while I was going through the cycles. At the end, when I started to feel better, she expected (and deserved) more walks. Like all dogs, she is content to be with her owner/guardian no matter what, and in some ways that made me very sad, last time. Maybe its her mothering experience—she had 3 litters, 11 pups total, after she retired from racing. But last time around, I felt a swing from me taking care of her to her taking care of me. She stayed extra close, keeping a watchful eye. I wonder if I could get her officially registered as a service dog. If people can have "diabetes dogs", then I should get to have a "chemo dog".

The Story So Far.

So, as many may remember, I go down to Mayo clinic in Rochester every 3 months for my regular post-cancer check-up. This last visit was #3, or 9 months down the road. Every checkup they do a cystoscopy (a long snakelike camera that looks inside the bladder) and also a chest x-ray and blood tests, etc. Everything's always been AOK. Every *other* visit they do an MRI. So I had on at 3 months, not at 6 months, and then just had one at 9 months.

Normally, Dr. Hunter comes into the room for the scope exam and starts off by saying something like "the MRI, Looks good, blood-work looks good...." The exam is done, and that's it for 3 months. This time he didn't say that. So after the exam, I asked him about the MRI, etc.

"Well," he said. "We're going to put you in a room and talk about that."

Not exactly what you want to hear.

So, I collect brother Kevin (who is there with me) and we are called into the consultation room. Since this is an unscheduled office visit, Dr. Hunter is busy doing exams so we meet with his resident—not uncommon. He shows us two areas of concern: two enlarged lymph nodes in the area where they removed the other nodes, and a (relatively speaking) large unidentifiable area that shouldn't be there. This unidentifiable mass is inside the pelvic cavity, next to the pelvic bone. This is Tuesday. A biopsy is scheduled for the next morning at 8:15.

It takes Mayo 36 hours to get biopsy results (many places it takes up to 3 weeks). They fast-tracked it, and we were in a room talking with Dr. Hunter's resident again a little after 2pm the next day, where he laid out the situation: both areas were cancerous.

Oddly, this is still classified as bladder cancer, even though its not in or affecting the bladder. The cells are still urothelial carcinoma. Early on in this process—over a year ago— they warned me that this is a very aggressive type of cancer that grows fast, is not easily chased away, and has a tendency to spring up in other areas.

The good news is that the cancer is not in any organ at this point. Even though there is lymph node involvement (which usually means that it is either stage 4 or 5) the real danger with cancer is when is spreads to the bones or organs and starts shutting them down. Its not doing that: its just a tumor, albeit an aggressive one.

I have a meeting scheduled with a urological oncologist (they are a big enough institution that they have oncologists that specialize to that degree) named Dr. Abbott. Abbott is Hunter's first choice to work with me, and I will gladly follow his recommendation.

Dr. Abbott will make recommendations on the next course of action, but this is expected to be 3 months of chemotherapy (longer than I had before) and will most likely be combined with radiation therapy as well. This could take many forms, from a single 20-minute treatment to daily 2hour treatment every day for 6 weeks. I have a meeting scheduled the following week with the radiation oncologist at Mayo, so I'll still be gathering information over the next 12 days or so.

It is unclear wether chemo will be done here in Minneapolis (my 1st choice) or in Rochester at Mayo. If they're using experimental drugs or some such, Mayo would be the only option.

At the end of this chemo (and most likely radiation) there may be a surgery to remove the tumor. The hope is to avoid this surgery, largely because this tumor is centered around a nerve that controls movement of my right leg. Specifically, the sorts of movements that one uses to drive a car: lifting the leg and moving it to the side. If surgery is unavoidable, they would need to cut this nerve, and I would be permanently unable to drive (though hand controls are an option) ride a bike, snowshoe, etc -- and would walk with a cane the rest of my life. Canes are cool, except when you *have* to use them. I'd also have to play guitar on stage sitting on a stool.

Best-case: I feel like crap for 3 months and then I put this behind me, hopefully for good.

Worst-case: well, lets try not to worry about that one too much.

Last year—when I fist went through this—I was new to the entire thing. I was also going through a variety of other junk that created a lot of background noise: I was out of work and having financial worries; my health insurance wouldn't cover Mayo so I was frantically trying to switch, and I also moved right in the middle of chemo.

This year, my health insurance is steady and reliable, I am working, and I am in a great house where I can safely stay. Smaller issues that I had last year—such as recurrent car trouble—have been solved by getting a newer, more reliable car. The psychological impact to me is lessened this time around, though it is still a factor, of course. THis time around, I have an idea of what to expect and am already getting my ducks in a row. I'm planning acupuncture visits during chemo, etc. I will have to drop a course in fall, but am still planning to take one online course. It will be good for me to have a focus, and I will be able to work on it as time permits.

I'm still angry about this entire thing, but it is manageable, doable and survivable.

Crap.

Just back from Mayo, with news that the cancer has returned. I don't have the energy to list all the details at the moment, though I will fill in the blanks by Friday for sure. More soon, - M