Silence
I follow a number of blogs. A really well-written blog is by Louise, called Bomb in My Belly. Sometimes, what Louise writes about is grief. Sometimes joy. Sometimes its about the really stupid things people say about cancer.
I am relatively silent on a lot of things in my blog. Mortality, especially. I promised my husband and son that I would be okay, and I really don't know what to do about the possibility I might not. Today I read Louise's link to another blog-- Cancer, Baby that CancerBaby's ovarian cancer has recurred. I have a friend who has ovarian cancer and they've told her that it is a chronic disease. She's has three bouts, but she's seeing her kids grow up and doing all those important things. Part of me wants to start rushing in and saying that there are lots of things they can do and they can do more every year and that's all true, but CancerBaby may die.
And I may die. My cancer is in remission, but I have a 30% to 40% chance of relapse. If I relapse, they do a stem cell transplant (a nasty procedure that involves pumping up my own bone marrow cell production to horrendous and painful levels, harvesting the cells, and then giving me massive doses of chemo to kill everything, including my bone marrow. Then they re-introduce my bone marrow and hope it comes back on line.) If I have a relapse, and a stem cell transplant, the chances of success are 50%-50%.
Overall, chances are 75%-85% that I'll live. But I don't talk about the other 15%-25%. In some sense, I expect to live, and so I feel as if I'm trying for unearned sympathy if I talk about mortality. On the other hand, who wants to talk about mortality? I know some people just can't. "Let's not talk about that now," they say. Okay. So we don't. Hodgkins is the good cancer, the survivable cancer. Right up until, for some of us, it isn't. I'm trying to be a survivor. I'm in remission. One chemo to go and then, hopefully, I walk away from Planet Cancer for good. I visit my oncologist for check-ups and make his day better because I'm a good news patient. I say hello to Jeannette and Pam and Tammi and Kelly and all the nurses who saved my life. I don't die for many many years.
I mean, that's the plan.
I don't mind being dead, it's getting there that seems so awful.
I am relatively silent on a lot of things in my blog. Mortality, especially. I promised my husband and son that I would be okay, and I really don't know what to do about the possibility I might not. Today I read Louise's link to another blog-- Cancer, Baby that CancerBaby's ovarian cancer has recurred. I have a friend who has ovarian cancer and they've told her that it is a chronic disease. She's has three bouts, but she's seeing her kids grow up and doing all those important things. Part of me wants to start rushing in and saying that there are lots of things they can do and they can do more every year and that's all true, but CancerBaby may die.
And I may die. My cancer is in remission, but I have a 30% to 40% chance of relapse. If I relapse, they do a stem cell transplant (a nasty procedure that involves pumping up my own bone marrow cell production to horrendous and painful levels, harvesting the cells, and then giving me massive doses of chemo to kill everything, including my bone marrow. Then they re-introduce my bone marrow and hope it comes back on line.) If I have a relapse, and a stem cell transplant, the chances of success are 50%-50%.
Overall, chances are 75%-85% that I'll live. But I don't talk about the other 15%-25%. In some sense, I expect to live, and so I feel as if I'm trying for unearned sympathy if I talk about mortality. On the other hand, who wants to talk about mortality? I know some people just can't. "Let's not talk about that now," they say. Okay. So we don't. Hodgkins is the good cancer, the survivable cancer. Right up until, for some of us, it isn't. I'm trying to be a survivor. I'm in remission. One chemo to go and then, hopefully, I walk away from Planet Cancer for good. I visit my oncologist for check-ups and make his day better because I'm a good news patient. I say hello to Jeannette and Pam and Tammi and Kelly and all the nurses who saved my life. I don't die for many many years.
I mean, that's the plan.
I don't mind being dead, it's getting there that seems so awful.
posted by Maureen McHugh at 1:08 PM
9 Comments:
you're right - it's the getting there that's scary. I feel preciously the same way.
I hope you don't mind, some of the Beekeeper's met up with Sean this past weekend, which you might know, and when I saw your post with his name in it, I thought odd! I didn't realize you were a PM - I'm a beewidow. CoffeeJedi's my man. So you may have an onslaught of beekeeper's popping in to say hi from over at Pheadra's blog.
and, I'm sorry if it is a problem, in case you wanted to keep them blissfully unaware of you battle with Hodgkin's. I can probably go in an take the link down, if you want.
CoffeeJedi rocked! So did Phaedra! I miss them all so much! I'd be delighted to have you guys come over.
And this last weekend in Chicago? Sean was robbed.
Beekeeper Clayfoot, duly popping. I dropped your Atom feed into my Sage newsreader for future popping needs.
Hi.
Thank you.
The Neb novel winner was the only one that really disappointed me. Nothing against Ms. Bujold or her book, but she's swimming in awards, and I'd like to see the Nebs go to stuff that's a little more edgy. (Like, say, Perfect Circle.)
I'm guessing you've already read Steven Jay Gould's "The Median Isn't The Message", but really, it's not about whether you'll live or die. We'll all die of something, except the Extropians. You'll be okay.
Louise, sorry for getting mixed up on the relapse thing. I'm glad you're okay!
But still deeply worried about Cancer, Baby.
David, thank you. That was wonderful. I read it and felt so immensely cheered.
I'm glad I could re-connect you to them. :)
I'm glad you're taking a trip. I know that with al the waiting on the tests to come back, I've been wanting to plan a trip myself, in hopes of escaping before treatment would start, if it does come back with the worst news.
Mary T. here.
I also loved Perfect Circle, but it isn't a very scifi book, alas. In fact, all the ghosts in it could be hallucinatory. I think Sean has a lot of other awards in his future, at least I hope. Those fishhooks -- hard to forget!
On the topic of relapse, Maureen, if it's not being too nosey, did they stage your lymphoma? I had the impression that yours was pretty low-stage. Also, in the unlikely event that you do relapse, by that time they'll be doing monoclonal antibodies and vaccines. Much kinder and more promising therapies.
There's a book by the founder of the National Space Society, Neil Ruzik, about his search for a cancer cure. It's called Race to a Cure. He had mantel-cell lymphoma, which is not one of the lymphomas for which there is presently a cure. He decided to fight chemo, which is not very effective for his type of cancer, and instead use a variety of therapies which considerably extended his life. (Would you believe Celebrex as an anticancer drug?) It's worth a look, not because it's useful now, but because it gives a preview of cancer treatment in the near future.
I know Ruzik's book is controversial, but even JAMA gave it a pretty positive review.
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