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

Mayo and insurance, also rant.

I got a thank you card from Mayo yesterday. It does kind of blow my mind that one of the world's premier medical institutions -- that anyone would be happy to go to -- is concerned about customer retention. I could be jaded and say: we'll they've probably made $100k from me so far. But I really don't think that's it. I don't think they're hurting for business, of course, but I have appreciated their fairly humble approach from day 1. At *no* point have they ever acted like, "we're Mayo. If you don't like it, go someone where else." Their care and customer service has been top-notch and they are a machine of efficiency. I've said this before, but many companies could benefit from watching how they do things. Their business model appears to be to do things quickly, efficiently, excellently, and profitably. I think all businesses would like to *think* that that's how they do things, but Mayo is a well-oiled machine that manages to never compromise customer (patient) satisfaction. Its truly amazing to watch them work.

One point that I've made here before is worth saying again: Mayo was once a referral-only specialty organization, but these days, they're in-network for many insurance plans and no referral is needed. *I* didn't need a referral, once I changed my insurance and got rid of Healthpartners. I just walked right in. My benefit level with them (and cost to me) is exactly the same as if I'd gone to any local Minneapolis hospital or doctor.

Medica and UCare are two plans that I know of that they take, and they take many others. (I know that they do *not* take Healthpartners).

If you're in the cities (or even in the 5-state area) they're the place you want to be. Or rather: they're the place you *don't* want to *need* to go to, if that makes any sense. But if you have any sort of ongoing condition, or haven't had a thorough physical in a while, give 'em a shot. You can call the Mayo Business Office at (507) 284 4366 to see if you're covered.

And if they don't take your insurance, you can always change your health plan provider annually at open enrollment no matter who you're insured through.

Just within the past few months, my dad changed his medicare provider to UCare, and and has now made Mayo his medical home-base. Dad went in for one issue and ended up getting a full workup in a second area, with potentially lifesaving results. They identified something that no one else had. So that's two people in the family now that they've managed to extend the lives of.

p.s. I'm doing great. Next check up at Mayo in about 2 months, but so far all still looking good.

A note about insurance, in general:

Even if you're insured through MCHA or through MinnesotaCare or Minnesota's General Assistance Medical Care (GAMC), you can choose which *provider* manages the care. I was on MinnesotaCare and I chose Healthpartners as the provider (which I regretted later). Medica was one of the options that I could have chosen when I joined up, I just didn't know that there was much of a difference. If you don't have insurance at all (and live in Minnesota) there are options for you right now that are sliding scale. Here is a good link to start your search:

http://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=dhs16_136855

Yes I had a lot of headaches with MinnesotaCare when it came time to switch. And they only cover $10,000 of hospitalization coverage per year, which is not nearly enough. But if you have no coverage (and qualify) it is much better than nothing, and much better than most student insurance plans. And it covers outpatient service with no apparently limit.

My MCHA (Minnesota Comprehensive Health Association) insurance (for which I chose Medica as the provider) costs me nearly $500 a month and then a $3,000 yearly deductible). This is because I have cancer and the pre-existing major condition makes me uninsurable from other self-insurance plans. I could get a corporate job, sure: but I'm in grad school and work part-time.

Rant:

So, I spend about $6,000 a year to insure myself because of the cancer. Because what insurance companies hate above all else is having to actually pay out on claims. It really impacts their financials. Our US Medicare system seems to work fine, and "Obamacare" essentially seeks to extend that to people who are younger than 62. This seems reasonable for me. Yep, it will cost the country money. Seems to me that the direct health and longevity of *all* of its citizens should be a cost-priority right up there with education and defense. Oh, wait: we don't value education either. But *now* I'm ranting.

Gen X Cancer Resources

Speaking of support groups, I just found a site called "Stupid Cancer" that caters to the under-40 cancer crowd. I'm not actually under 40, but I identify much better with that crowd, I find. And I think they'll let me in: most of the other Bladder cancer survivors are old enough to be my parents.

One quote that I found on their website that I just had to share:

"See, we don't typically do relays for living stronger, races for fairy dust cures, riding for rose petals, 5K saunters for research, or team trainings. But when we do, it's not for the "cure". It's to help young adults fight cancer and get busy living. With us, it's just you, your friends, possibly a few awkward co-workers, some booze (for the 21+ events), great music and good old stupid cancer. (Pole dancing, karaoke and flaming shots optional.) But in all seriousness, it's about hanging out with people who "get you" and who won't pity you for being 40 years younger than them. "

Amen.

http://stupidcancer.com/

I'm back from the wars with... good news.

I was up early, my mom picked me up and we made the 1.5 hour drive in the dark to Mayo clinic in Rochester. Mayo is huge: a network of at least 10-15 buildings, and they kindly provide a detailed and easy-to-read itinerary by mail beforehand.

I get blood drawn, drop off a urine sample, then head to another building for a chest x-ray and then an MRI. Finally we get a lunch break (the tests and MRI had to be fasting, so by this time its noon and I'm starving) and then we return to good old Gonda 7 South (Mayo Gonda Building, 7th floor, south desk). This is the home of Urology at Mayo. I'm the youngest patient in the room, as always.

Here I change from street clothes for the 3rd time today into an ill-fitting and unflattering white and blue floral print gown, and get ready for the Cystoscopy. I'll spare some of the details. Imagine something the diameter of a pencil (with a small camera and light on the end) being inserted somewhere that most people (men and women alike) would not want it inserted. If someone gives you the option of avoiding this procedure, I would take that option.

On the plus side, I got to see live TV of the inside of my bladder. So that was kinda cool, if not relaxing at all.

Hunter also told me that I am the youngest patient he's ever seen with muscle-invaisive urothelial carcinoma (Bladder cancer, stage 3 tumor). I feel special.

At the end of the procedure, Dr. Hunter tells me that everything looks fine. The lab tests were clean, the X-rays and MRI were clean, the Cystoscopy looks clean. Great news.

As hoped, I'm in remission. Other than a check up in another 3 months, I can go away and stop worrying about the C-word on a daily basis.

I do have some lingering numbness on my inner thighs that Hunter says will likely be permanent, That is from the surgery where they removed 18 lymph nodes in the groin and left behind a bunch of staples. They look really cool on X-rays, by the way: little white lines scattered around my lower abdomen like sunflower seed shells. Al least I hope they're staples...

I also have increased ringing in my ears and some additional hearing loss -- both of which are likely permanent if they haven't come back to normal by now. That's from the Cisplatin that I was given during chemo, a documented side effect. The peripheral neuropathy (numbness in extremities) that I was feeling has faded so much as to be almost imperceptible. Sometimes my fingertips just feel *odd*. I can't really describe it any other way. Like they're waking up from sleep and only 97% there. And I think I'm a little more fumble-fingered than I was. My hands are a little weaker, and I drop things more often.

Of all, the hearing loss and increased tinnitus (ringing) bother me the most. A daily reminder of this ordeal, I guess. But, as Thompson put it today (making reference to the inner thigh numbness), "If that's the worst you're left with, its really not all that bad." Its true. My tumor had spread to Stage 3 (T3), which means that it had invaded the muscle wall. The very next stop on that particular express bus is T4 -- the cancer spreading to other organs -- which is usually thought of as the time when they start giving out life expectancies in terms of months. We caught it in time (just barely, it seems) and (also as it seems) completely. Pretty damn amazing.

I'll try to keep up with this blog as I'm realizing that there is an emotional and mental recovery component to this stuff as well that I was not prepared for. I spent so much time in crisis mode, just juggling several disasters one after another that I took no time to really process it all mentally. Not really, I don't think.

As a result of many things, the entire world fell apart for me emotionally the day after I got the catheter out (2 weeks after surgery). I cried for hours and was actually dangerously close to suicidal. Everyone hated me. I hated me. My dog hated me. I was a burden, a callous, a time-sink for everyone I knew, and a vortex that sucked in all the happiness in the world and turned it ugly. I was all of these things and I believed all of these things for most of a day. Which made no sense. I was done, clean, free, cured, loved and cared for. I have a great family, a great girlfriend, a lot of great people in my life. I knew I could have picked up the phone and called any one of 100 people and they would have come over. But I didn't. I didin't want to. I'd been too much of a burden already. I knew I needed to (or wanted to, at any rate) process it and get through it alone. I knew at the time that it made no sense. But emotions don't always make sense.

So I'm here, and I'm doing well. But I think my next stop will be to try to locate a support group. And if all else fails I'll start my own Gen X Cancer Survivors support group. Maybe we could all go do music bingo at the Chatterbox or something, rather than sit in some stuffy church basement drinking transparent coffee under fluorescent lights.

And yes, I will always think of the movie Fight Club, no matter what support group I attend.

Back On the Air

I haven't written to this blog at all in a few months. Mostly because I have enjoyed *not* having things to talk/complain/vent about related to the cancer. People recommended that I post some sort of closure and I just never really got around to it, or never really knew what to say, or perhaps the matter never really felt closed. Its still a worry for me that it will come back. I still wear my yellow "Cancer Sucks" wristband as a daily reminder to myself. It helps me to not take things for granted anymore.

These days I'm feeling normal (whatever that is). Physically, mentally and emotionally. I'm in good spirits and have been traveling. I'm back in school, back at work and back at the gym. My hair is coming back in, though a little different than before. I decided to leave my earrings out (they took them out when I did the CT at Mayo) and decided to wear my sideburns a little shorter. I also shaved off my soul patch, since I kept seeing it in recent photos of me and it was bugging me looking at it. It had its day.

The entire Cancer thing has mostly been on the back-burner, honestly. Gone but not forgotten. Tomorrow, Friday, I head down to Mayo with my mom for my first 3-month checkup. I'll be poked and prodded, bled and bruised, and will even have to go through a claustrophobic MRI, but won't actually have the results until the next week. I feel fairly sure that I'll get a good result, but there is still the worry. THis will be a fairly key checkup: if the cancer has come back I may be in Chemo again within a week and/or talking about more surgery soon. If it came back, It would mean that it is indeed a highly aggressive cancer. But since they're as sure as they can be that they got all of it in the surgery, it will mostly likely be a negative scan. As reassured as I can possibly be at this point, I'm still allowed to worry a little, I think.

I'll post more when I get the results.