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.


emily said...

oh, thank goodness. i'm so glad you spoke up about the whole picture, scary stats and all. i did some poking around on mayo and pubmed, and was delighted to see the 60%, somewhat less delighted about the other things i saw. so i've had this crap in the back of my head all along, too, and hoped you were doing all right with it all.

i for one do not believe that you're required to feel or look good at any point in this process. if it's easier for you to fib when asked, then go for it... but it's not your job to make people feel better about you feeling wretched.

easy for me to say, though. mortality and i are friends. for a while there i thought i might be a midwife when i grew up; imagine my surprise when i starting working with people at the extreme other end of life. i sincerely hope you're not meeting with any of my colleagues any time soon.

are you, in fact, feeling any better post-chemo? do you have everything you need?

Anonymous said...

Wow, Emily said everything I would have said (had I the wit and perception). I kinda suspected that you were being all brave and Minnesota about this. But that's the thing about people being brave -- you have to let them be.

You are doing the right thing with your ". . .keep the good, get rid of the bad, grab the wheel with both hands and take charge."

As to the "only a 60% chance that I'll be around 5 years from now," it could be a lot worse. We're praying for you, and for a good outcome from the surgery.


Eclector2 said...

Michael, Michael,
I agree with your father. (Does that make you smile?) We are all scared for you and knew that you were trying to be positive because that's what we all do. Besides, dwelling on the negative was never your strong suit.

Your anger is so totally understandable. Your life has changed in a way that must feel like you are putting on a new skin. How do I feel in this skin? How do others see me now?

Please know that you are loved and we who know you will not avoid you or look at you funny or expect you to be sunny and cheerful or to lie about how you feel.

Your future is unknown, but necessarily grim, thinking too much on your mortality is not good. With time you will find balance.

Please know that you are not grieving alone. It is your personal struggle, but we who love you are linked to you at the heart and we are feeling your pain.

Love, Mom

Eclector2 said...

I meant NOT necessarily grim. The surgery could work out just as you wished it would. That is what I will be hoping for.

M said...

Thanks, mom, dad, Emily. It means a lot. There are still choices I can make and things I can do, though I hate having few options to choose from. This year has been a rollercoaster of unexpected turns, both good and bad, and I'm still only just beginning to process it all. Thanks again for your continued kind words and support. Much will be revealed at Mayo, and here's hoping for clean biopsy results on October 18th.

Kelly McCullough said...

Not much to say beyond hang in there and know that an awful lot of people are pulling for you.

Raymond Yates said...

Nothing but love and support from me, bro. I am so hoping with you for a good biopsy result, and looking forward to going on many more adventures together!

If I've been insensitive to the pain you're going through, I apologize for my part. It wasn't intentional. In fact, I think and wish and hope for good fortune for you every day, several times a day, ever since news came. And those wishes will continue even after the cancer is gone.

Deborah in MN said...

My heart aches for you little brother. I wish I could take some of the load for you. I agree with what Mom and Dad said. I will be praying for you even more now.

Anonymous said...

Michael, there are so many people who love you, and you don't have to be brave, or look "good," or pretend everything is all right when it isn't. If you need to talk about the anger, or even yell and carry on, I am here to listen. Please call me whenever you want, I am here.


Eclector2 said...

To Raymond, I doubt that you have cause for apology. You have been so sensitive, supportive, and available to Michael that I do not think that you could possibly do any more.


Kevin said...

I'd like to say something funny, to take away the pain and the anguish that you feel, that I feel. But I just can't do that right now.

I only have one brother, and I don't want to give you up. I love you, and I want you to know that. If there's anything I can do, tell me.

Anonymous said...

Want you to know that I can be at Mayo as support team if I would be helpful rather than in the way so far as you and your closest ones are concerned. All I need to know is the date and time. Love you, as always, for being our own special Michael.

Auntie Norma

lsikora said...
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lsikora said...
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lsikora said...

Michael - I wanted to say I really appreciate you sharing your feelings in this blog. It's kind of interesting - you were worried about shielding other people, and not wanting to worry or depress them. If anyone else out there is like me, they may have wanted to show concern and offer whatever help they can, but also don't want to come off as being morose or say the wrong thing or act as if they have a clue as to what you're really going through. I'm not talking about me of course, just anyone else who might be similar to me in character and personality (also spoken like a true Minnesotan).

Talley Sue said...

I for one am sort of glad to hear that you're pissed.

You're entitled to be. Not that anybody ever promised *any* of us a long life, or an easy life, or a happy life. Not that any of us are ever promised a pain-free existence.

(I remind myself of that often when I worry about my kids, and about others.)

But I think it is good to be angry when bad things happen to you.

You wrote:

" 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. "

Maybe we need to start some sort of "Weird Cancers Society" to do fundraising and camaraderie plege-walks (mostly camaraderie, in terms of effectiveness, since the money would get spread pretty thin).

We can all wear T-shirts that just say where our cancer is:
Thyroid / Bladder / Tongue / Rectum

It could get pretty weird!

Anonymous said...

isn't it funny, people tell you that you look good, and you look for the underlying motives. I did the same thing, I got to the point where I just said "because I have cancer?" I had no time for the weirdness of it. thinking good thoughts for you and "a beyond-5-year-plan."

Jo Wagner

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