Ever had oxygen and felt like you could smell the tubing smell afterward for a bit? I have that now. I was on O2 yesterday for a bit during the procedure -- but I attribute it to the fact that there is a rubber/latex/silicon/something tube in my vein, and when I exhale, I can taste it. Kinda strange.
I got a call from Dr. Hunter, the Mayo Urologist that I've been working with for a year or more. This was just a followup call to answer any question that I had, and I asked him some hard questions. He is one of the world's leading experts on urothelial carcinoma, so I figured that he would have some ideas.
He was reluctant to give life-expectancy estimates. Everyone is. Partially with good reason, as people could fixate on this number. He did say that I have some good things in my favor: usually this disease affects only people much older than me, so my (relatively young) age is a plus. Also, I have good renal/kidney function, which is another plus. I also responded well to chemo before, which is another plus.
One negative is that I had chemo and it *didn't* make it go away forever. It chased it away for about 9 months. That tells them that the chemo should make it go away for awhile, but it is unlikely that it will make it go away forever. Dr. Hunter stated that -- at some point -- the disease will progress. He is reluctant to give life expectancy estimates, but the best he was willing to say is that my lifespan will now likely be measured in years, not decades.
I know that none of us have any guarantee of a long life. People say, "well, you could get hit by a bus tomorrow!" True enough. But if learned individuals told you that it is very likely that you will get hit by a bus tomorrow, and that you fall into a category of people that tend to get hit by buses frequently, would it change your outlook?
I know, there is no sense harping on it and focusing on the negative. Dr, Andrew Weil once said something that stuck with me: all healing is self-healing. If a patient decides they're going to get better, they will do better than a patient who decides that there is no hope and that they're not going to get better.
My problem a the moment is that I'm not sure that *I* believe that there is a hope. I've been told some very scary news. I need to get my head into a better place and start to believe (rather than just say) that I have a chance. This is perhaps my biggest hurdle at the moment. I'm working on it, but it may take a while to get to that place.
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andrew weil is right, but beware the biggest pitfall of that philosophy: if things go badly, it doesn't mean it's your fault because you had the wrong attitude. it just means things went badly.
Part of the problem with people not knowing what to say is this very huge fact sitting squarely in the middle of the road. It's like the famous, "Apart from that, Mrs. Lincoln, how did you like the play?"
You've always been extremely resourceful, so you will find a way to overcome the conversational awakwardnesses.
I think -- and it's not just hope talking -- that this will turn out better than your worst fears.
--Dad
@ Emily: I tend to agree, and I have already blamed myself for being responsible for the disease's return. Possibly I could have tried harder at thinking positively. Or something like that. But I do think that if I were to decide that Its all over with and hopeless, I think that reality would manifest itself! Or Maybe not! The problem with statistical probabilities that the doctors give is that they're all functionally bunk: I will either outlive the estimates or I will not. Round and round she goes; where she stops, nobody knows! @Dad, I certainly hope so!
For the positive side, there's the fact that new treatments are being developed all the time - perhaps a cure is years, not decades, away.
Barbara Ehernreich wrote a book about the damage our faith in positive thinking can do. (Essentially, saying what you've said--that if only you had thought positively enough! Now it's your fault! Ouch.) Might be worth checking out. http://www.barbaraehrenreich.com/brightsided.htm
I have a copy of that book - got it when you first got diagnosed. The first half turned out to be about something else; stopped reading it when you were looking like you were going to stay cancer free.
I will see if I can dig it out again! I remember she railed hard against the people who criticized the cancer patients for being sad or mad or angry. They wanted to keep you positive because it's easier for them, Ehrenreich felt. That if it's 'positive image, chipper happy all the time' then they don't have to deal with you, say, freaking out because your death could be way soon. Which if it was me, I'd be freaked!
But developing a positive support structure in your mind and with your support people is absolutely important. Going into your chemo thinking that there is a chance could be very positive to keeping your spirits up during that time, whether or not it has shit-all difference on efficiency of the treatment. (Which I remember Ehrenreich also saying that the people who say 'folks with positive attitudes heal better, everyone knows, studies all show that' are actually not right.)
It was fun playing Arkham with you tonight! This recurrence of cancer diagnosis is like getting cursed - you need to roll sixes now. But the chemo gives you plus three, and if you maintain your sanity points above five, and get the 'maintaining mental health and networks' spell, that's another plus three. So that's six d6.
Might be a longer shot than you want, but still do-able.
Love!
John
To my son, Michael,
I recognize that you are the one who is walking this very scary walk, but we who love you are also very scared. We do not want to lose you. The very idea feels like a knife in the heart.
Your importance means that we can't separate our worries from yours, whether we say it aloud or not, our minds are chewing over these same questions. I know we will not suffer the actual pain of chemo or cancer, but yet we will suffer pain, because you do.
Because we love you we are linked to you on this journey. Please know that if you are discouraged or scared or lonely that there are many, like me, that have you constantly on their minds who would be very happy if you were to call at any time and say "I need you".
Love, Mom
P.S. I am sad and I am terrified but I also believe that you will have many good years ahead, that the chemo will work, and that you will have happiness.
People who say, "well, you could get hit by a bus tomorrow!" aren't living where you and I are. They can't imagine it no matter how hard they try because their brains won't let them stay on the subject for long. We, on the other hand, have a hard time not thinking about the threats we face. Something will always bring it back to mind. Every time I do an activity I love, I think about what it would be like to not be able to do it ever again. When I feel the warmth of the sun or the relief of a breeze on my body, I think, what if I lose the ability to feel that? When I hug my husband or son or others I love, what if I can't do that anymore? People who don't have this threat don't have to deal with the constant thoughts. I know enough to know that I don't know what it feels like to be in your shoes, but I'm willing to listen if you want to talk. I am praying for your healing and many people who know me are praying for you also, because I've asked them to. Prayer is powerful.
Years become decades.
What John and Cathy said, minus the stuff about the gaming. You get to feel what you feel! You need positive thoughts to get through the process, and I hope you will lean on those who love you to help when you feel down. But if you want to rage against the darkness I am here to listen to that too.
Rachael
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