Wednesday, March 21, 2012

In our last episode

Oh, hi. Was I saying something?

So yeah, my parents are here! Yay!! When they originally booked their tickets to come out at the beginning of March, we were trying to time it with when I'd be starting treatment. But due to some things I'll tell y'all about in a sec, that hasn't started yet. So we've just been hanging out and doing touristy stuff instead. And it's been great!

Last week, we spent a few days in Jamberoo Valley. It was gorgeous and easy and fun.
I mean, c'mon. Am I right? That is so beautiful it makes me want to punch someone. You probably know I have that tendency. Anyway, on the drive back to Sydney, I realized with a start that I'd gone almost 48 hours without thinking about breast cancer or treatment or test results. That hadn't happened since the day I got diagnosed. That was nice! It helps that I'm pretty much all better from the lumpectomy. I have full range of motion back and almost no pain or tenderness at all. So it's easier to go through the day and not think of it when you're not sore. I mean...don't punch me in the boob when you see me or anything, but I'm almost all better.

I don't think I've told y'all about my appointments with the oncologists. Two weeks ago, Jase and I had back-to-back appointments with the radiation oncologist (who will oversee my radiotherapy) and the medical oncologist (who prescribes and monitors chemo treatments). It was a huge day.

These appointments are's like a cross between a university lecture and a job interview. Not in characteristics necessarily, but in how they make me feel. I am trying to listen and understand and absorb every concept and term, as if I'll be tested later. But I am also nervous and feel like my future is on the line. Though if chemo and radiation therapy are job openings, I'd rather just work at Krispy Kreme or something. For the record.

Jason and I really liked both doctors. They each spent about an hour with us, which amazed me. So often, you feel rushed out the door at the doctor's office, but they each took time to listen to us, to explain and re-explain, and to give lots of good information. Actually, when we met with Dr. M, the medical oncologist, he told us that Dr. A, that radiation oncologist, had just called him to let him know what we'd talked to her about, so he'd be prepared to answer our questions. And they aren't even working at the same hospital. Now that is service, people. I really feel like I'm in good hands.

So here's the nuts and bolts, for those of you keeping score at home. I will definitely be having radiotherapy...we've known that since I chose to have a lumpectomy instead of breast removal. For us, chemotherapy was more of a question mark. We had a lot of questions, and we wanted to hear some numbers from Dr. M. Survival rates with and without, statistics on the difference chemo makes in early breast cancers, etc. I also had talked with my sister about and researched a diagnostic test that is now being done in cases like mine. It's called Oncotype Dx.

Now, I'm guessing you didn't get out of bed this morning and go, "I really hope someone blathers on and on about cancer cells and genes in those cells. And if they could be a layperson and not explain it super well? Even better!" So, I'll just say this. This is a test developed in the US several years ago, that looks at the tumor and its specific characteristics. As in, it looks at your tumor, if you're having the test. And based on some characteristics of the cancer cells, the test is able to assign a "Recurrence Score", in other words, indicate the likelihood that that specific cancer will spread or recur in another part of the body. Based on that score, women and their doctors are better equipped to make a decision about whether or not chemo would benefit them. If your score is low, studies show that you actually benefit more from not having chemo (and receiving other treatment instead).

If you're in a position like mine, or if you just really like learnin' stuff, go here to read about Oncotype Dx. (I also linked to the wiki article above.) After a long conversation, Dr M told us that he felt that this test could help us make a decision. It's relatively new in Australia, which means it isn't covered yet by our national health plan (Medicare) or by our private health insurance. If we were going to have it, it was going to be expensive. But, no biggie. You only need one kidney, right?

Kidding! (About selling a kidney, not the fact that you only need one.) So we left that appointment with a decision to make. Either opt to have chemo straight away or have the Oncotype Dx done, which takes 2 weeks. The doctor didn't really recommend one over the other, but my impression was that if there were no financial burden on us, he would have recommended the test more strongly. I felt conflicted about it--what if another test was just going to give me another number to feel anxious about? Would it muddy the waters or would it be nice to have some specific information on my tumor, not a general statistic based on thousands of cases?

I also felt bad to make everyone (my family and friends) wait 2 more weeks. I know, that sounds so stupid. But I put this pressure on myself--my parents had put everything on hold to fly out here and be with us for my treatment, and here I am pushing it off again. I thought, maybe I should just have the chemo so there's no more delay. I told Jason that, and he said, "Wow. Your thinking is more messed up than I thought it was." And I was like, TELL ME ABOUT IT. And then we both laughed at me.

I'm gonna skip over a weekend's worth of conversations, and googling, and Doctor Who watching (not relevant, but good for stress relief) and just tell you that the following Monday I called Dr M's office and asked them to have the test done. That was 2 weeks ago today, and I'm supposed to call the doctor's office tomorrow to see if the results are in. And we'll go from there.

Oh, and one more thing to mention. I'll fill y'all in later, but I also had a blood test to see if I'm carrying the gene mutation for breast cancer. I won't know those results for a few more weeks. This involved me giving a detailed family medical history and meeting with a genetic counselor the week before last. The main red flag for them is 2 sisters both having cancer before the age of 40. There are lot of other indicators that I don't have. But as crazy as it sounds, they said it could still be a coincidence. They said they'd seen it before. Of course, it could also be that we unknowingly built our childhood home on a toxic waste dump or ancient burial mound. Hey, I saw Poltergeist--those burial mounds can make some crazy stuff happen. Who knows what causes these things, you know?

I don't know if any of that makes sense. I hope it does. I've talked about it so much that I almost can't tell anymore. I'm always trying to think of ways to make it more concise for the listener. This is hard to do when it's been your 24/7 reality. You know when you say a word over and over again, and it starts to sound like nonsense to you? It's a little like that. So, please forgive any ambiguity.

Other than all that, things are good. No, really! I mean that. As heavy as all this stuff may sound, I've had a great few weeks. Life is clipping right along, as it tends to do. And here is where, if I weren't getting sleepy, I'd say something wise and touching about life's rich tapestry, and light and shade and blah blah blah. And you'd reach up and wipe away a single tear from your cheek. And you'd nod your head, and feel affirmed and stuff. So let's just pretend that we did all that.

I hope you're doing well. I really do. xoxo


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  2. Thanks for all the information! You did a great job writing in a clear, concise manner. Bottom line, we hate cancer! I agree with your dad that you're kicking its butt just like Becky did. My prayer for you is that all the tests reveal very conclusive data (no Brac gene and no likelihood of recurrence) that helps you make the best decisions for a quick, complete recovery. As always, we send our love.

  3. Yay, you're back! Jamboree, oops, Jamberoo looks lovely - like Yorkshire with palm trees?? Willing your test score to be extra low.

  4. Excellent write up, and thank you for taking the time to do it. I'm book marking it for future reference, should I ever need to know this stuff. The valley is indeed stupendeouly beautiful. Visiting Australia is on my bucket list, as well as New Zealand. You're in my thoughts and prayers, asking for the best outcomes for you and yours.

  5. Great to hear from you. Thank you for the update. I'm glad you've been able to enjoy yourself too. How beautiful are those pics! Hope all goes well from here. Xxx

  6. Great stuff, Amy :) The last paragraph will have me laughing for days. Easily entertained by wit, I suppose. We're praying for you girl.

  7. I can't wait to hear the results and I hope they are everything you hope for.

    The story of you in the Ikea is still one of my top 3 all-time favorite internet things. I often tell people I will punch someone in the face for all the right reasons, just because of you and Becky.

    As a child, could you slide across the kitchen floor without outside forces, did anyone ever want to peel their face off, or did anyone get trapped in a television?

  8. Thank you so much for posting all the details, as this could really be helpful information for people to know. You are a very thoughtful person, even with cancer! Good luck with everything!

  9. Great post! So glad your parents are there to distract you! Praying your tests come back good! I'm gonna have to punch someone and see how that works form me. "Here Kitty-Kitty!"

  10. Thanks for the update - had been wondering how you were travelling. Will keep my fingers crossed that you've already heard all the bad news you going to hear for now, and that the rest of this little trip is smooth sailing.

  11. Glad you have your parents there to support you; I think it's just as important to have making-decisions-and-waiting-for-answers support as it is to have going-through-treatment support. I enjoyed reading your post & learning more about the process, but I'm still not entirely sure what the "best" outcome is on these tests -- but whatever it is, I wish it for you!

  12. I've been checking the blog obsessively, so glad for this post. Loving you from afar!

  13. Also, your parents are so awesome I can hardly deal.

  14. I am here to testify that the Jambaroo Valley is one gorgeous place to be. And may I add, the Hubbarts are the most fantastic hosts to have. Y'all need to make plans to come visit. And while you're here, be sure you go to Kiama. Special little town right on the ocean. Amy and Jason know all the great places to go!

  15. I enjoyed reading your post & learning more about the process, Thank you so much for posting all the details I hope they are everything you hope for....
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