Whether you're a person that believes in prayer, good vibes or just plain positive thinking, I could really use any spare prayer/good thoughts energy to be focused on one specific thing: I really need my biopsies on October 15th to come back clean and cancer free.
The results of the 10/15 biopsies will greatly determine the scope and invasiveness of the surgery that I have the following week.
Still hanging in there, though worrying about the surgery of course.
Thank you, to everyone, for your amazing notes of encouragement and cheerleading, I feel very loved.
- M
Monday, September 27, 2010
Friday, September 24, 2010
On the Rise
I'm feeling better by degrees and gradually feeling more like myself. I've had the energy to go on longer walks and even went to the gym yesterday. I still worry about the surgery, etc., but in general I'm doing better.
I've been back at work (part-time, which is as often as I ever have worked during school) and its going well.
My next real steps are:
1) making sure the insurance transfer from MNCare to MCHA goes off as planned at the end on September. I have no reason to suspect that it wouldn't, but I'll rest easier knowing its done with.
2) figuring out the logistics for the Mayo trip. I now have dates in hand:I'll be at Mayo on the 15th for another biopsy, though this will be outpatient, day-surgery. I'll be back in Rochester again on Monday the 18th to get the results from Dr. Hunter I'll plan to check into a hotel that night and stay in Rochester. The next morning, the 19th, I'll check in and have the surgery that day. I'll be at mayo for about a week. The surgery will suck, and the recovery will be annoying. But hopefully I can start getting back into some sort of normal routine by early November.
I've been back at work (part-time, which is as often as I ever have worked during school) and its going well.
My next real steps are:
1) making sure the insurance transfer from MNCare to MCHA goes off as planned at the end on September. I have no reason to suspect that it wouldn't, but I'll rest easier knowing its done with.
2) figuring out the logistics for the Mayo trip. I now have dates in hand:I'll be at Mayo on the 15th for another biopsy, though this will be outpatient, day-surgery. I'll be back in Rochester again on Monday the 18th to get the results from Dr. Hunter I'll plan to check into a hotel that night and stay in Rochester. The next morning, the 19th, I'll check in and have the surgery that day. I'll be at mayo for about a week. The surgery will suck, and the recovery will be annoying. But hopefully I can start getting back into some sort of normal routine by early November.
Monday, September 13, 2010
Good news, bad news.
I am back from the Oncologist's office. The scan was good news: the tumor has still not spread anywhere else, but they couldn't image it clearly on the CT scan. This either means that it has has broken up (this does not mean that I'm cancer free) or just that they couldn't get a good picture.
The good news is that I'm done with chemo, at least for the forseeable future. Though on the chemo subject I am already starting to get a little testy when people tell me that I look good. I think what they really mean is that I don't look anywhere near as bad as they thought I would. Some people even tell me that the chemo was easy (this seems strange to me, since it was me going through it and not them, and there were times when I thought I was going to die I was in so much discomfort). But I am not the kind of person to contradict if I can avoid it. And I am enough of a Minnesotan that when people ask me how I'm doing I take it as a greeting and not as a question of health concern. I respond in the standard Minnesotan way: "pretty good". Even if I feel like my joints are going to explode and I feel like I'm going to black out when I sit up suddenly.
Dr. Grampa reminded me that Chemo here is really just used to keep the cancer at bay. It puts it on pause, so to speak, but isn't able to kill it. They still can't cure cancer. This is why some of the more popular cancers have walks, ribbons, races, etc. Though I sometimes think that these events are more about cameraderie than about fundraising. And cameraderie is great. If you have a popular cancer. Bladder cancer is apparently obscure, so I have yet to meet anyone that has had it. Yet again, I am a rebel: flying in the face of the norm.
My cancer is highly aggressive, so Chemo (and even radiation) would not solve the problem. The only solution is to cut out the affected area of the bladder, anbd take a few lymph nodes in the area to biopsy, and hope that this gets it all. But there is a chance, a very real chance, that this will *not* cure it, and this is what both my oncologist and the bladder cancer doc at Mayo (one of the very best surgeons in the entire world for my exact type of urothelial carcinoma) are telling me.
There is a very real chance that I may be chasing this cancer down for the rest of my life and that it will affect my longevity. We talk about cancer in terms of 5-year survivability. Mine -- with my unusually young onset and freakishly aggressive composition -- is at a 60% chance of survival, according to Dr. Hunter at Mayo. FYI, If I had not done anything at all, I'd have been dead within 2 years, the cancer having by this time spread to bones and other organs. Dr. Hunter mentioned in my initial meeting with him that in his (extensive) experience with this type of cancer it most likely *will* come back within 4 or 5 years, mostly likely in another location. Even if I cut out the affected area of the bladder.
My 5 year survival drops to 20% if the biopsies that Dr. Hunter plans to do before surgery don't come back clean.
I have known about some of the scariest statistics for months but just haven't been sharing them here. I think I was trying to shield people or something. It was a misguided attempt to put on a happy face all the time and not worry anyone when some people are very worried. But I realized that I haven't been blogging much recently because all I have been thinking are these worst case scenarios. And I didn't want to worry anyone. I really don't want to be the guy that you don't call or see because I depress you or remind you of mortality or something. It made sense to me at the time, but I'm starting to get to the anger part of this 12-step grieving process of mine. I shall never be the same. And that part really pisses me off.
On the plus side, having some heads-up of one's possible mortality forces one to make better choices: keep the good, get rid of the bad, grab the wheel with both hands and take charge. None of us ever have any guarantee of being around tomorrow. But it sucks to think that there's only a 60% chance that I'll be around 5 years from now.
The good news is that I'm done with chemo, at least for the forseeable future. Though on the chemo subject I am already starting to get a little testy when people tell me that I look good. I think what they really mean is that I don't look anywhere near as bad as they thought I would. Some people even tell me that the chemo was easy (this seems strange to me, since it was me going through it and not them, and there were times when I thought I was going to die I was in so much discomfort). But I am not the kind of person to contradict if I can avoid it. And I am enough of a Minnesotan that when people ask me how I'm doing I take it as a greeting and not as a question of health concern. I respond in the standard Minnesotan way: "pretty good". Even if I feel like my joints are going to explode and I feel like I'm going to black out when I sit up suddenly.
Dr. Grampa reminded me that Chemo here is really just used to keep the cancer at bay. It puts it on pause, so to speak, but isn't able to kill it. They still can't cure cancer. This is why some of the more popular cancers have walks, ribbons, races, etc. Though I sometimes think that these events are more about cameraderie than about fundraising. And cameraderie is great. If you have a popular cancer. Bladder cancer is apparently obscure, so I have yet to meet anyone that has had it. Yet again, I am a rebel: flying in the face of the norm.
My cancer is highly aggressive, so Chemo (and even radiation) would not solve the problem. The only solution is to cut out the affected area of the bladder, anbd take a few lymph nodes in the area to biopsy, and hope that this gets it all. But there is a chance, a very real chance, that this will *not* cure it, and this is what both my oncologist and the bladder cancer doc at Mayo (one of the very best surgeons in the entire world for my exact type of urothelial carcinoma) are telling me.
There is a very real chance that I may be chasing this cancer down for the rest of my life and that it will affect my longevity. We talk about cancer in terms of 5-year survivability. Mine -- with my unusually young onset and freakishly aggressive composition -- is at a 60% chance of survival, according to Dr. Hunter at Mayo. FYI, If I had not done anything at all, I'd have been dead within 2 years, the cancer having by this time spread to bones and other organs. Dr. Hunter mentioned in my initial meeting with him that in his (extensive) experience with this type of cancer it most likely *will* come back within 4 or 5 years, mostly likely in another location. Even if I cut out the affected area of the bladder.
My 5 year survival drops to 20% if the biopsies that Dr. Hunter plans to do before surgery don't come back clean.
I have known about some of the scariest statistics for months but just haven't been sharing them here. I think I was trying to shield people or something. It was a misguided attempt to put on a happy face all the time and not worry anyone when some people are very worried. But I realized that I haven't been blogging much recently because all I have been thinking are these worst case scenarios. And I didn't want to worry anyone. I really don't want to be the guy that you don't call or see because I depress you or remind you of mortality or something. It made sense to me at the time, but I'm starting to get to the anger part of this 12-step grieving process of mine. I shall never be the same. And that part really pisses me off.
On the plus side, having some heads-up of one's possible mortality forces one to make better choices: keep the good, get rid of the bad, grab the wheel with both hands and take charge. None of us ever have any guarantee of being around tomorrow. But it sucks to think that there's only a 60% chance that I'll be around 5 years from now.
Tuesday, September 07, 2010
Rawhide
I have been progressively feeling better, though still very tired. I no longer feel like I have the bends, and am sleeping well.
Today I had the CT scan, which is a quick and painless scan. The entire thing took less than 5 minutes, and the worst part about it were the clock-watcher techs and nurses at Mother Theresa Institute, more interested in getting maximum patient throughput than anything else. Rawhide-style medicine, I thought at the time: "Keep movin', movin', movin' / Though they're disapprovin' / Keep them doggies movin' Rawhide! / Don't try to understand 'em / Just rope and throw and grab 'em..."
The results will have to wait until next Monday when I meet with my oncologist, Dr. Grampa. This is the scan that will determine whether I have to do more chemo, or Herbert the tumor has shrunk enough that we can do surgery.
Speaking of surgery, I am on Dr. Hunter's schedule at Mayo. If all goes as expected with the CT, I'll be down at Mayo in early October. It's a little scary to have a date set for the surgery. It has a seemed a little theoretical up until this point...
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