Saturday, April 17, 2010

They Don't Deal in Guarantees

(Advance apologies for the high level of oncological details in this post. There will not be a test.)

We had the first meeting with my medical oncologist last Monday, after the episode with the squirrel. She seems to be from the same bright and super competent sorority as my surgeon. Multiple people have told me she is the absolute best in Atlanta, and so far I'm willing to believe it.

At this point I want an expert to take me by the shoulders, look deeply into my eyes, and say, "Yes, you are going to be completely 100% fine. You are going to beat this, have no recurrence, and live until the age of 102, when you will die peacefully from having eaten too much risotto." Nobody will quite tell me that I'm definitely going to live to see my children grow old. I no longer ask because it starts to seem impolite.

That said, it was encouraging to meet with the oncologist and learn that she stages this cancer as a IIA. For any of you cancer nerds out there, here is some more info (the rest of you can skip to the next paragraph): Stage IIA, multiple foci with largest area of infiltrating ductal carcinoma 9mm, one lymph node involved, strongly estrogen and progesterone-receptor positive, not her-2 overexpressing, a high cell proliferation rate as indicated by a Ki-67 measurement of 32%.

So that up there is what they took out of me. The oncologist liked the small size of the largest tumor, she liked the strong hormone receptivities, and she did not like the high cell proliferation rate. She said this cancer is "a mixed bag." Small but potentially nasty. She also said, "Thank God we got to that early, because it would have been several years before anyone made you get a mammogram and by then you would have been screwed." Those might not have been her exact words, but that was the gist.

I was confused by the whole tumor-size issue, because the surgeon had said I had a 4-5cm mass. Apparently that was a mass of ductal carcinoma in situ (the kind that stays put in the tubes), which she wanted to get out, and the parts the oncologist was more worried about were the littler bits that were starting to grow up, get rowdy, and move out of the house.

So, stage IIA. That puts me in a very pleasant bracket with a 92% five-year survival rate. I am happy to be there. But even though that 9mm tumor and that bad lymph node are sitting in jars downtown, and they can't hurt me anymore, the doctor is of course worried about what they might have gotten up to before they were taken out. She had a lot of metaphors involving trains and buses. The lymphatic system was the train line and you know where all the stations are. Blood circulation is the bus system and who knows where it goes. There were more metaphors. But the point is that we now have to do something to round up any cells that may have hopped a bus and be in there riding around, and that something is chemotherapy.

On metaphor: if you read this blog you know that I am a word person and that words matter to me. We live our lives in language. If you have a complicated thing wrong with you, or if you are just interested, I highly recommend the book How Doctors Thinkby Jerome Groopman. It talks about doctor-patient communication--Groopman says that although a doctor's tools are medical, she meets her patients in language and language is the first tool. As a patient, you must use language to be your own advocate, to help your doctor avoid certain cognitive pitfalls (that the rest of the book about), and to get better care. You do it by active listening and by asking questions. Ask questions to find out stuff you don't know, or to clarify stuff that isn't clear, but also ask questions that make the doctor say what she thinks in several different ways. If something seems tacit in what the doctor is saying, ask a question that makes it explicit. I tend to ask lots of questions that start, "So you are saying that. . ." or "What would be an argument against [what you just said]," or "What would be another way of saying what you just said?" It is kind of exhausting.

But we learn. Every time we meet with another person, we get a slightly different window onto this whole complex disease process. The surgeon's view and the oncologist's were quite different. We left our surgical consult thinking, "OMG, this is a whole mastectomy with a large mass and there are two funny-looking nodes." Then came the surgery with its news of only the sentinel node involved and clear margins. Then we left the oncologist's office thinking, "Okay, she told us that one node is not 'falling off a cliff' and it's an early stage cancer and we're just trying to hold down the odds of a recurrence. I am going to make it out of this."

Probably with no hair, but I'm going to make it out.

A lot of the question right now seems to be how aggressive to be with the chemo. A nurse said to me, "It's funny--the better the prognosis, the more aggressive the treatment." The onc said she "agonized" over whether to do a so-called "dose dense" regimen where I get chemo with adriamycin every two weeks, or a different regimen that is only every three weeks. She doesn't like how aggressive that small tumor seems. She is also trying to weigh the risks associated with the dose dense drug--risks of cardiac damage, secondary leukemia, and who knows--because I have to use this body for many more decades. She decided on the conventional every-three-week course. She said that in her training, they called adriamycin "the red death." So, not getting that is good, I think? She also said that in her experience, young mothers were willing to "call in airstrikes on themselves" if it meant guaranteeing they'd be around for their children. I guess the dose-dense adriamycin would be that airstrike, and I told her I would do it if she thought it best. But she went with the other thing, four to six cycles of Taxotere/Cytoxan.

I know, details. So get this, I am starting this on Wednesday. As in, in four days. What the HECKS? I thought we were, you know, just talking this stuff over. But, um, no, I actually have to do all this crap. We had a meeting with the nurses yesterday about what to expect and side effects and all that. I am sure you'll be hearing more about this, but now I will bring an end to the longest and most poorly-structured blog post in these United States.

But I am serious when I say that everything is fine. I told Matt last night, "Is it weird that I feel really happy?" Not weird I guess. I am not happy about the hair issue but we can talk about it later.

I'm happy because I got my second surgical drain out yesterday and there were no rodents involved. Phew. And Amy is coming! Wednesday!

34 comments:

Viki said...

That is very good that you are stage 2. It is also excellent that you are strongly positive for estrogen and progesterone. Unlike me who is Her2, it's wonderful that you are not. After I had my training and I went to see my oncologist, he asked me if I wanted to start chemo that same day. I did but unfortunately, it was too late in the day and I had to come back. I just wanted to get the show on the road. Thrilled that you got that other drain out. Just keep hanging in there.

Camp Papa said...

Dear SubMat Readers, you probably won't see many comments from me on this blog for the next several months. You might imagine that this is a difficult subject for me to talk about, but Becky's grace, strength, and poise in the face of all this compels some response. There's not much that I can say that won't sound like a father talking about his beloved daughter, but I wish I could make you all understand what a high-quality human being Becky is. I guess about all I can tell you is that even if I weren't their father, I would be proud to know Becky and her sister and brother. They are every bit the people that their mother and I dreamed they would be, and then some. Thank you all for your prayers, kindnesses, and support for Becky. We absolutely believe that she'll come through this in fine form, but it's going to be a hard slog for awhile.

Bonnie said...

Becky -- good news, but I still ended up in tears. Glad for you, sad for you. I just want this all to be over with for you!

Maggie said...

I have to chime in with strong agreement, Camp Papa. Becky is truly a high-quality person, as are Amy and David. She will come through this with grace and humor and all of the gifts you and Debbie instilled in her. I love all of yall and am so very proud to be her aunt and your sister-in-law. Love to all

The Dental Maven said...

Becky: We're here with you, grateful for your prognosis and glad this process of chemo begins soon so it can be done and behind you!

Camp Papa: It's so very obvious to SubMats readers that she's a high-quality human being. I think we're all so grateful Becky has such a wonderful, loving and supportive family. Know this: we keep all of you in our prayers.

Keely said...

I read your post and felt as optimistic as you said you did, and then I read Camp Papa's comment and started crying. Because I really want to get to know this high-quality person that everyone who knows you feels you are.

So, kick butt all over the bus route. Hair grows back, right?

Michele said...

How like you to not want to be impolite. I wept when I read this. It's okay to be impolite sometimes you know.

I want to reiterate what Dental Maven said, we all know what kind of a person Becky is. It comes across in every one of her blog posts.

Amy said...

SO glad the other drain is out! I know that's been making you miserable. I didn't quite grasp all the technical stuff, but it sounds to me like a really good prognosis, with some hurdles to jump in the meantime.

And though I don't know you personally, I have to agree with Camp Papa that you are a remarkable person. And your sister Amy? Wow, now, SHE is truly phenomenal. And hot, too. ;)

SO grateful that I get to come be with y'all!! I am bringing treats! And I want you to know that I am talking to God about your hair. xoxo

jillbert said...

Becky, I'm so sorry you have to go through all of this. Your dad's comment is so sweet and made me cry. The good news is great though. Stay positive - I really believe it helps.

aimeewrites said...

Hurrah for the second drain coming out (and especially for the lack of rodents).

What a cool Papa you have.

Boy, I wish I'd found your blog and gotten to know you before I moved away from Atlanta. I want to DO something, like drop of a completely unhealthy cake.

M said...

Glad your prognosis is good; glad your treatment begins soon so that it also then ends soon. Camp Papa sounded like my dad talking, so it made me cry twice as hard.

I hate the statistics part of medicine, but do know that my dad, 81, is a lung and bladder cancer survivor, and he's years beyond the original 5 they like to suggest as the norm after a lobectomy. Oh yeah, you can do this!

Mary

gretchen said...

I'm afraid that much of this post was Greek to me. That said, I have the following things to say to you...

Hair is just hair.

Happy is always good.

Starting things immediately is always good.

Dying at 102 from overindulgence in risotto is an reasonable desire, and still attainable.

You are an excellent human being.

Kiss your father on the mouth from me.

Amy said...

I was feeling pretty nerdy for tearing up over this post. Because it's not a SAD post, or really BAD news, right? But I was pretty sniffly.

And then I read all the comments and felt better. We all love you.

Calling in airstrikes, I think we all get. And I'm glad you didn't have to get on that particular red phone. Wednesday is soon. And that is good.

One thing I know? You are gonna rock the no-hair-accessory look. Hugs to you, and Camp Papa too.

Jenni said...

Things sound positive, but your dad's comment wrecked me. I'm so thankful that you are surrounded by that kind of love and support.

Does the Liberty of London line include scarves? I'm going to check tomorrow.

missynall said...
This comment has been removed by the author.
missynall said...

I was fine.... until I read your dad's post! Where are the d*&^N Kleenex? These posts need to come with a warning! What a sweet daddy you have. I love to hear your positive, spunky spirit shine through all this. We're here... prayin', cryin' and lovin' on you!!! I'm especially praying for your beloved Target to come out with some amazing line of wigs... from London or Orla-land! (ooops... made a spelling error so I had to re-post. YES, I am like that!)

Mad Woman said...

I'm so glad that they're getting you started on this stuff ASAP...and that you've called in an airstrike. I imagine mothers the world over making the same sort of decisions so that they can be there for their children.

How wonderful that Amy gets to come and be with you, what a wonderful gift. Don't worry too much about your hair.....just get better and better. The hair will come back.

((HUGS)) to you, you wonderful, beautiful, amazing, strong woman.

Judy said...

Most of your blogs since your surgery have made me cry, Becky! So proud to be part of your childhood and to know your family. Camp Papa is right in his assessment of you and Amy and David, but who's surprised? Your awesome folks have produced awesome kids. You know we've got your back!! Our prayers continue for your complete healing.

Beth said...

Good grief, Camp Papa, you sent me over the edge! That was some seriously beautiful blog commenting, for SURE.

And I heartily assure you that we do indeed value the quality that is Becky. The first time I met her, I was totally on board. Becky, I remember eating in that joint-y restaurant on that steep hill in SF after trolling around for *something* for breakfast, chatting it up with you and E, and thinking, "Dude, this Becky chick has got it going ON. She's my kind of people."

And I was not wrong. :-)

Hang in there. You're doing fab.

abdpbt said...

Just caught up on this, Becky, and wow are you so strong. I have to admit that a lot of the stuff they're telling you is beyond my understanding, but it sounded beatable and a decent prognosis, no? I know you're strong enough to get through the chemo, and I will definitely be rooting for you. I admire you so much.

Meghan said...

Lord have mercy, I should have waited to read this until after I put on my make-up! Your sweet dad. Things sound very positive! And I know everyone says it is just hair and it will grow back (and of course, it will..of course!), but as a hair person myself, I would find the hair loss to be pretty crushing...maybe even more crushing than the boob loss, even if that is totally distorted. You have some beautiful hair...so yeah, I'd be mourning it too if I were you. Even in the midst of gratitude over stage IIA. So very happy that Amy is making the trip! If you all find yourself at the mountain house again, tell her to call me BEFORE the last day you guys are there. ;) Many prayers still headed your way.

Amy said...

Meg! I will let you know in advance this time. :) xoxo

mbaumbick said...

I love this blog, not only because it gives Becky a place to recount in full what is happening to her, but because so much love and support is shown with every post. Becky - you know I think you've got it goin' on and I know you are going to rock this! I am in awe of you, your wonderful family and your friends - both known and unknown. I am here for you, every step of the way with whatever you need.

Michele R said...

Your post and your dad's comment made me think about how we will always feel as parents, whether our children are 10 years old or 37 years old or 52 years old. How we would gladly take the pain and the illness in lieu of them having it if we could somehow make that deal.
My SIL started chemo for breast cancer exactly four years ago, as the end of the school year approached (teacher). She decided to first get a short haircut. She preferred to have lots of summer hats. She didn't miss the big family reunion in July. When she stopped the chemo her hair started to grow again right away, and looks as good as before.
Becky, you continue to amaze me with your positive attitude, and your sharing of details and information.

Alice Robertson said...

I found your blog via an alert on "Jerome Groopman" and I am so glad I stopped by. Your witty writing is an encouragement and delight. On one level I can relate to your trial. My teenage daughter was diagnosed with cancer months ago (oddly, she is my second child to have cancer. Not related, or genetic, but whatever......it's quite a road to travel. Dealing with doctors is a bit like entering college classes and trying to figure the professor out. There are just some we are incompatible with.....and in the book you mentioned Dr. Groopman shares that even doctors admit they are incompatible with their own breed at times! It's smart to move on in some scenarios).

I just wanted to share that your writing (and summations of what you have learned) will help more people than you know. And someday your children will have a written record of your struggle to read, and understand their mom at a new level. When we write at a precise moment about our anguish, our victories, and distress it captures a moment that is lost if we don't chronicle it. Time heals, we forget lesser details, but it's often those precise tidbits that make a story complete.

Thank you! Well done! Alice Robertson

A Lawyer Mom's Musings said...

Dear Camp Papa, we need no convincing. We understand completely.

Becky, I am doing the happy dance that you're ER+. That's wonderful news, especially given your young age. Don't know much, but a friend of mine had breast cancer back in 1997 (she's perfectly fine, by the way) so I crammed on Susan Love's books. I'll have to check out Jerome Groopman.

XOXO

Rebekah said...

From one Becky to another,

I wish you didn't have to go through all this. I'm so glad you're sharing your experience and letting us all pray for you, think of you, learn from you, and send you lots of care packages. I second your dad and your sister, but I knew the Woomer's had good taste, so I expected nothing less. I Must come to ATL to visit soon.

Sjn said...

No matter what your age, it's all about living for your children, and... your grandchildren ;-). I know there are no guarantees, but you have great medical care and a ton of people praying for you, and I'm betting 100% you will beat this.
I read an article 3 years ago, "Beyond Cured" by Kathy LaTour. She writes about coming to terms with the idea of death, the fears we face, and how we come out "like the phoenix, stronger and tempered by fire to live a new life".
She also writes "cured will always be about the body, the physical self. Healed is about the soul and the spirit... or put simply: To be well is to be cured, to be whole is to be healed".
I am praying you are well and whole, cured and healed.

Elizabeth said...

Becky, I came to your blog through my friend Gretchen and I'm marveling at your sense of humor and resolve. I live way out here in Los Angeles but I grew up and my parents still live in Atlanta, so I know it very well! I also have a good friend here in LA who went through what sounds like the exact same thing as you are (she is a divorced mother and her girlfriends, including myself, did all her doctor visits with her to take notes, hold hands, etc.) and she is doing FANTASTIC several years later. I happen to have a child with a severe disability who is now fifteen years old, and it's a marvel to me that you are already advocating so well for yourself in that medical world. Bravo. I send you well wishes and prayers and strength and courage as you move forward. (And tell your father that he's a gem!)

Steve said...

Glad to hear you're not triple negative. You're going to be okay.

Elle said...

My ghodz, beautiful, your family.

Dr Transit is right abt yr fortuitous timing. Thank God. Keep moving forward, like Lot's wife should have.

Also, one of my girlfriends still hasn't lost her hair. We shall not speak aloud of her troubles, but you will have to trust me when I say that she has strongly-rooted stuff. Il est possible. xox

kathy said...

Becky, your details help us all understand better what cancer patients face when battling this disease. Of course I agree with your Dad about what a quality person you are! You "WILL" be fine! I join my prayers with Amy's about your hair. We'll be in touch with you and your parents as you begin this process. Enjoy Amy!!. What a blessing to have her back in the states to be with you.

Scott said...

I really dig the human body as mass transit metaphors. As They Might Be Giants says: "the human body is a bloodmobile." It's so true.

Becky, if you need anything at all: please, please, please just let us know. We're a quick little drive away and we'd be willing to do anything to help out.

The Stiletto Mom said...

You will live to see those kids get old and everything is going to be okay. That's why you have that happy feeling, you know you caught it in time, you are actively participating in kicking it's ass and you will win.

And I can testify having met the lovely Sub Mat in person, she is every bit the quality person her Dad says she is, lovely inside and out.

I adore you. xoxo