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