Friday, July 29, 2011

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.


Emily said...

how's your ambien supply?

Cathy Crea said...

This sucks. However, it sounds like you are in good shape to kick its ass. Keep up the fight, and let your friends and family help you fight it.

Wendy said...

Yes, what Cathy said. It's veggie season so I can make you a bunch of bland veggie food with brown rice :)

Love and healing!

Anonymous said...

Love you. Let David and my Mom know if you need anything, Sari and I will be home at the end of next month an I am happy to help out with cleaning and meals. Just let me know. We are thinking of you.


nihilix said...

Man, I hate posting comments with these damn sign-ins, particularly when everyone's using my machine and flipping the sigs around.

Sucks but yep, you're way better set up for dealing with this. Didn't know about the longer chemo; that'll be a PITA and then some. And while I'm still holding out for a super-power if you get radiation, I saw Captain America last night and if the Red Skull is one of the options, oof.

OK - let's see if I can find a profile to comment under... sigh...

lsikora said...

Hi, Michael - just found out about this new chapter - enjoying your writing again, but hating the reason you're writing. But you're obviously a pro at dealing with this, and you're right on it!

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