Thursday, March 1, 2012

LOLsob

Well, this is a bit of a bummer. Last Friday, the doctor called with the results of my pathology report. There was the initial result that they do during the surgery--the one I told you about, where they determine if the sentinel node has cancer cells. My initial result was negative, which we were very relieved about!

When the doctor called a few days ago though, he told me that when they did the more detailed pathology, my sentinel node showed a "micro-metastasis". This means that there are cancer cells there, though only a very small amount. We had talked about this being a possibility back before I had the surgery: that even though the initial result could be negative, it could turn up positive when they had a more detailed look.

When I heard that fact, I treated it in the same way I did when the anesthesiologist was about to administer the epidural when I was in labor with Nate. You know, when they're running through all the risk factors and possible side effects. He told me that in a small percentage of cases, the epidural didn't "take", and that there was no reduction in pain. Yeah, yeah, I said. Gimme the shot! And then, a few minutes later when I was most certainly not numb below the waist, I realized that I was in that small percentage. Ha! Hahahahaha. Ha. Let's all take a moment and do one of those laughs that turns into a sob at the end? You know the one.

So, I'm listening to the surgeon on the phone, taking notes furiously. Grade 3 tumor, dumbbell shaped, Estrogen receptor positive, HER-2 negative, slight spread to lymph node, chemotherapy recommended. Then the receptionist schedule me for a CT scan and a bone scan at the hospital, to make sure there wasn't metastasis already. The lymph node involvement isn't enough that they think it's necessary to do more surgery, but it seems that I have ticked all the boxes as a candidate for chemo.

I was really hoping to avoid that. Do you ever talk about yourself, or something you're dealing with and feel like you're talking about someone else? I still do! Like, these words don't apply to me! A month ago, I didn't know Tamoxifen and hormone receptors from a hole in the ground.

So to fast forward a bit, yesterday I was at the hospital most of the day for those scans. Today, Jase and I met with the surgeon, for my post-op followup and to discuss treatment. Good news is my scans are clear! And let's be honest, my boob is looking good! If I do say so. We asked a lot of questions about the decision to recommend chemo. Of course, he's not an oncologist, and some of our questions will need to wait. But here is the analogy I used with him. I understand that I'm young for a breast cancer patient, and in young women breast cancers are more aggressive. And that doctors tend to be quite swift and aggressive in treatment. But in my case, is having chemo like using a nuclear warhead on a medieval army? When really, some arrows and catapults would do the trick? Like, you know, a "shock and awe" kind of thing? Because I really don't want to get blasted if I don't have to.

My dad disagrees with this interpretation. He asks, is not having chemo like killing all the vipers hidden under your bed and leaving one behind? He's such a buzzkill! I told him I liked my analogy better. We've kind of had a friendly competition lately, seeing who can come up with the best one. Whatever, we're nerds, I guess.

The doctor said that chemo wasn't necessarily always a nuclear bomb, there were many types of chemo drugs and treatments, and that in my case it probably wouldn't be. He was really great--we asked a lot of questions, as I told him, we'd been doing a lot of reading and talking and he was the first to bear the brunt of it! But he was patient and took time to really listen to us. But really, he isn't the one who will be directing this part of my treatment, now I'm passed on to the medical oncologist. We'll see him at the end of next week. The adventure continues! To tell you the truth, Jason and I are not sold on chemo yet. We have many questions, and we just want to make an informed choice. I may post more about that later, if anyone's interested.
I know the tone of this post is perhaps more melancholy that I normally am. Getting that news on Friday was definitely a low point. It impacted me emotionally more than even the initial diagnosis! I'm not sure why that would be...but for us, chemo opens up a whole new can of worms I was hoping to avoid. Losing my hair being the least of them! Though that sucks, too.

I've been doing much better this week--through this whole process, I've never really felt afraid. I have had a lot of peace, I've been able to focus on other things and do what I've needed to do. I am grateful for that! I think if I had to sum up what I'm feeling now, I'd maybe say frustrated. Except if there were a word that meant "frustrated times 20", I'd pick that word. Also, impeded. This freaking, fracking cancer is getting in the way of things I wanted to be doing this year. I know already that important parts of my life, important parts of what Jason and I do in the church are going to suffer this year because of it. I will, I'm sure, overlook or miss some things with the kids. I have friends, both in and out of our church that are going through their own stuff and I want to help, and I know I won't be able to like I'd hoped. And that pisses me off, to be honest.

But listen. I am well aware, well aware that if all I endure in this struggle is a year of frustration and stalled goals then I will be a fortunate, blessed woman indeed. In the long game, this is just one year out of many to come. I don't feel that I'm in a fight for my life at this stage, and I am beyond thankful for that. Truth be told, I can handle a crap year if I need to. But I don't have to be excited about it!

And if the purpose of some of these posts is to give a snapshot of what this unfolding thing is like, the practicalities, the day-in and day-out of it, then that is what you'll probably be hearing from me. I guess anyway...what is our life but a succession of "everydays"? What we do, who we spend time with, where we go? So even if I know I'm one of the fortunate ones, with a treatable cancer, I'm still sad about what the days to come could have been. It's hard.

But it's not impossible, and I know that. I'm going to be fine. Dammit. Ha! Hahahaha.


33 comments:

  1. oh Amy what a bugger not to have a fully endorsed all clear. Choosing not to have chemo when faced with all the information would have to be THE hardest decision. Look to Becky for support, yes it will curtail 2012 in a big way but at the end you cant say you didn't do all you could.

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  2. I think you need a cupcake or 10 - chocolate right!

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  3. Oh no, sorry to hear the initial good news wasn't quite right. It must have been a huge down especially as you'd had reason to think it was all OK.

    As for this year... I have chronic fatigue syndrome/ME which started when I had glandular fever a decade ago. I know that frustrationx20 far too well. All I can say is that you'll learn so much about yourself and life and the people around you, so even though you'll almost certainly miss out on things that are important to you, it won't be wasted time in any way. Even the bits that are so hard that you wish as you're learning them that you weren't, they'll still end up feeding into other things and enriching them - not least your understanding of other people's struggles, and your care of yourself.

    That chat with Becky is so funny - the school system definitely fails in that way! They should have prepared us for the fact that being teacher's pet doesn't fix everything!

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    1. Thanks, Nina. I know you're right, about it not being a "waste". I'm sorry, too, about what you've been through!

      And yes...it's so true how conditioned we can be to look for approval from authority figures. Not a lot of good it does in this instance, though! :)

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  4. I have heard more people talk about getting a report like this than I would care to, and with the same draconian, long-face doctor doing the presenting, so much so that I was almost knocked off my chair last month when I read in the NYT that this node line-of-thinking is experimental. I always hear they are presenting it like it is Proven Science Fact, but WTH is it science fiction?

    I'm glad to hear you are feeling great. Feel great! Try not to identify yrself too much with all these decisions, just keep yr head down & let them do their stupid tasks. Or fire them, you know? Don't let their exciting experiments interfere with who you are or how you feel. Idk, maybe I'm speaking out of turn. xoxox

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    1. Not at all out of turn, Elle. Thanks! I've often thought to myself that I don't have to let this define me.

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  5. I have heard more people talk about getting a report like this than I would care to, and with the same draconian, long-face doctor doing the presenting, so much so that I was almost knocked off my chair last month when I read in the NYT that this node line-of-thinking is experimental. I always hear they are presenting it like it is Proven Science Fact, but WTH is it science fiction?

    I'm glad to hear you are feeling great. Feel great! Try not to identify yrself too much with all these decisions, just keep yr head down & let them do their stupid tasks. Or fire them, you know? Don't let their exciting experiments interfere with who you are or how you feel. Idk, maybe I'm speaking out of turn. xoxox

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  6. Dammit x 2! I was exasperrated when your parents shared about the sentinel node. You know that John and I are praying for all of you. We are so frustrated that you are facing this situation. I know beyond a shadow of a doubt that you will be fine. I also know that God will use you and Jason through your personal journey dealing with this disease to minister to others in similar circumstances. I'm glad that your parents will be with you during part of the crappy treatments. I wish you were closer so we could hug on you, and encourage you in person. You have a right to be bummed, frustrated, peeved, and mad. Cancer sucks and all that goes with it! Lean on God and His promises which are your light and life. You are loved!!!!

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  7. Do you have a daughter who has become in every way a better human being than you are? Well, this one is mine! And you know what? Just in case this becomes a competition, I've got another daughter just like her. Then, BOOM! I've got a world class son.

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  8. Thank you for sharing your story. I totally get what you are saying. Sending such good thoughts your way!

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  9. Sorry to hear that it wasn't the best news possible after all, but I'm sure it will all turn out okay in the end and those vipers will all get killed off somehow! Sending you good wishes as always.

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  10. Dumbbell shaped, eh? Your tumor sounds so mid-century modern.

    On the up side, at least you can borrow all those crazy wigs that Becky's housekeeper (?) offered her. Am I right?

    Thinking of you and your family. I know you will be all charming and smart and peppy through your chemo, if you choose to do it, and maybe you will even punch someone in the face. We can only hope.

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    1. You are hilarious! This made me laugh. Yes, definitely mid-century modern...just shows I've really internalized all the design blogs I've been reading! LOL

      I'm not quite at face-punching status yet...but I can definitely see it on the horizon.

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  11. Well, UGH.

    Not at all what we were hoping to hear, is it? I completely understand why this news is more devastating than the initial diagnosis. Still, I love how informed you are, the reading you're BOTH doing, the communications with the medical staff. I have a feeling this series of posts is going to be very helpful to other women going through this crap in the future.

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  12. Well shit. Love and prayers continue. You are all kinds of exceptional. Love you!

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  13. No doubt my sassy wig Codi can take a trip Down Undah.

    But yes sister, I know how bummed you are, and I was mighty disappointed in the turn this took. I know chemo was never off the table but after your surgery, I had sure put it off the table in my mind.

    I do think you guys need to interrogate those docs and ask all the questions. I know you'll make a good choice. XOXO

    The other night when you told me about it, it just made me feel so tired. Like, not LOLsob, but more "Well, sob, shit, sob."

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  14. Okay the parts of my comment got jumbled around but you get me.

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  15. Oh Amy, that just stinks. I'm really sorry. I was so happy to hear that they had "got it all." Now I am with Becky on the "W, s, S, s."

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  16. Damn, damn dee damn damn. You must feel like they pulled the damned rug out from under you just when you got back on your feet. Well, it's going to be alright. Maybe just take longer. Which is, yes, a bitch. But doable. Definitely doable.

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  17. *sigh* I'm so sorry to hear chemo is unavoidable, but I'm still thankful and in awe of how great you're doing so far. Sending you all love & strength. xxxx

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  18. Sweet Amy, I'm so so sorry. What a decision. May the Lord speak LOUD AND CLEAR and may you and Jason have complete unity. I love you, sister, and miss you so very much... :)

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  19. Brilliant analogy! So sorry to hear the news, but I'm glad your family is flying down to be with you. God is bigger than cancer. We'll be standing in faith with you.

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    1. Lol! Not at all! You can believe its much less harsh than some thoughts I've had!

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  21. Just wanted to say to everyone, thank you!! I've been trying to respond to the comments individually, but Blogger is acting funny right now. Whatup, Blogger--does expressing emotions make you uncomfortable?? :)

    Anyway, to all of you--thank you for your concern and encouragement. It helps to know I'm not just sending these posts out into the void. You are each hereby awarded 10 Gold Internet Stars, from me. xoxo

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  22. Praying real hard for you guys. We HATE cancer.

    All the Ligons

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  23. Just catching up (sorry I have been MIA) - i am thinking of you and sending love - i can only imagine how frustrating and overwhelming this can be - i hope you get more answers to help you decide about chemo. xxx

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  24. Stumbled on your blog and love that someone else is going through crazy stuff and yet is still capable if seeing the humor in it all. I mean I am not going through half of what you are but it was a great reminder that God is good and yes we will survive and be stronger for it. I will start praying for healing in your body. I just keep asking myself,"Ugh why is everybody making such a big deal out of all this? Lets just get on with it so I can go on with what I was doing!"

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  25. Sending hugs and lots of love your way.

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