Friday, January 07, 2011

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. "


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.

Thursday, January 06, 2011

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.