Filed Away

Tuesday came and went, with no results in from the lab. The doctor's receptionist told me to check again on Thursday. Then yesterday (Wednesday), I was putting Grace back into her carseat after a trip to the gym and I heard my phone buzz. I'd missed a call from them! My phone has been permanently attached to my hip pocket since all this started, and of course I miss the doctor calling to tell me the test results are in.

I drove home, obeying all traffic laws, and called them back. Dr. M only had a few minutes to talk to me, but it was enough time to tell me that the Oncotype Dx results were "good". My score is well within the low-risk category. This means that chemo would not benefit me. As he said, "Chemo would not be good for you." That is the take-home message, my friends.

So now, I've scheduled my appointment to go in and get set up to begin radiotherapy. After that starts, I'll see Dr. M to begin taking Tamoxifen. This is known as "hormone therapy", and is given in the majority of breast cancers. Most breast cancers have hormone receptors, which means, in a sense, that they feed off those hormones. My cancer was mostly estrogen receptive. Here's the kindergarten explanation (which is about where I'm at in all this!) of what Tamoxifen does: it keeps estrogen from getting to the cancer cells, starving them of what they need to grow. Most breast cancer patients take it for 5 years. It has some side effects, but is shown to be remarkably effective.

This is all good news. In fact, it's great news! Yesterday after I got off the phone, Jason and my parents were asking me how I felt. "Aren't you relieved?" I am! I really am. But to tell you the truth, I didn't really feel much of anything. Yes, I worried a little about the number, wondering if it was low enough. I think, with something like this, you second guess it no matter the result.

Really, my emotions in general have been subdued over this whole thing. I think it just makes it easier to cope. I wasn't elated with yesterday's news, but I wasn't sobbing when I was told I had breast cancer, either. To hang my heart on every doctor's phone call and lab result is frankly too exhausting for me. I think I have tried to adopt an even-keel kind of outlook, because I know that I have to deal with whatever the news is going to be--good or bad. So, even though I've had a positive outlook and tried to believe the best, I've never taken chemo off the table. Until yesterday. I was honestly ready to do whatever I needed to do. And to do that, I've needed to not be too emotional about any of it. Roller coasters are fun for a very short time, but after that they just make everyone queasy.

I'm now feeling the same way about this genetic testing. If the results come back that I have the gene mutation for breast cancer, a lot of things get put back on the table. (I'll explain more on that later!) So in my mind, it's almost like these issues: possible surgery in the future, radiotherapy, fertility, cancer returning, etc., are all file folders open on my desk. I won't close any of them yet because it would be too difficult and upsetting to get them back out again once they've been filed away. Or at least, that's how it works for me.

But I can file away the one labeled "chemotherapy". And that's a good thing! I know I'm kind of rambling here--it sounds so abstract, even to me! I mean, obviously talking to y'all is therapeutic for me in some way. And all your comments and thoughts have been so helpful and encouraging to me, too. I guess if I were reading, I think I'd be interested to know what this is like from the "inside". So many of us have friends or family that deal with breast cancer at some point. Or I think that if someone who's in the same situation stumbles across this blog, maybe they'll relate. In a way, I want people to know that dealing with this is not tears and misery 24/7. Yes there is stress and frustration and fear, but it is do-able. It is. If this card comes up for you...you can get through it.

I know I'm one of the lucky ones to be able to say that: with an early stage, treatable cancer, and that I might feel very differently if my diagnosis was different. But I guess this is just my perspective, which is why it's a blog!

Anyway, that's the latest from meeeee. I have been venting emotion in other ways, though. I find I speak my mind more freely with people lately, and Jason tells me I have been much more sassy than usual. Actually, I think he said surly, but sassy sounds much more charming, doesn't it? I even got into an political debate on Facebook today! Me! Of all people! The most non-confrontational person on the planet! I never go there. (It's my number 1 FB rule. That way lies madness.) Obviously there is some pent up stress needing an outlet.

Anyone else been blowing off steam lately?

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 strange...it'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

Off kilter

I know, I know. It's one of those self-indulgent Instagram self-portraits people do. Like where they're all, "Look, I just happened to snap this photo of myself the other day. It's candid, see? Cause I'm not even looking at the camera! Lol!"

But I did it to show y'all something. I'd just gotten back into the car at the hospital the other day and put my glasses on so I could see to drive. And I laughed at my reflection in the mirror, and decided I needed to share.

About 6 weeks ago, I was stretching at the gym, on one of the floor mats. I'd set my glasses down next to my water bottle. As I was standing back up, yes, I stepped on them. Bending them so badly that I can't get them to sit straight on my face anymore.

I usually wear my glasses when I need to see mid-to-long distances. Driving, of course, but also shopping or when I'm speaking or singing at church. Since they've been wonky though, I only wear them in the car when it's too cloudy or dark to wear my prescription sunglasses. It's just too embarrassing to wear them elsewhere.

So now, the world is a bit like a Monet painting to me. All the faces at church are kind of impressionistic, slightly blurred. The rows of food at the store pleasantly smear together. I'm kind of getting used to it.

I could easily go get new glasses. I don't really know why I haven't. Except that part of me feels like I'm using up my quota of doctors' visits right now. Like, there's only so many appointments I can schedule and times I can reasonably ask others to watch Grace, and I'm reaching the upper limits. Going to get new glasses just seems excessive. Or something.

Does anyone else do this? Truthfully though, my glasses have always been a bit crooked cause honestly, I think my ears aren't even on the sides of my head. No really! Don't laugh! It's the only explanation I can come up with.

We can't all be symmetrical! This apparently applies now to boobs, ears, and eyeglasses.

Relief

Hi everyone! Thanks for all your comments and thoughts and overall sweetness. Pretty much...you're the nicest blog readers in all the Internet. How lucky am I?

The blog has been a bit quiet this week, cause Mom and Dad arrived this past Monday! Yay! So we've been getting out and about this week. The kids are loving it, and so am I. They're like family to me, you know?

This past Friday was our day to meet with the radiation oncologist and the medical oncologist. It was a information-overload type of day, but a really good one nonetheless. I mean, "good" in the sense that we really liked both doctors, they each spent a lot of time with us, and answered a lot of questions. Not "good" in the sense that someone waved a magic wand and I don't have cancer anymore. As I've said before, good and bad take on new meanings!

I'll talk more about all that soon. Just wanted to check in! We had those appointments yesterday, came home and debriefed with my parents and sister via webcam, then I packed for a girls' night away. My book club had planned this months ago, and I didn't want to miss out just cause of stupid, dumbhead cancer.

So I was up till 3am last night chatting, except we never seemed to really talk about the book. It was fun, but an absolute marathon of a day. I think I need some sleep now.

I hope you're well. Have a beautiful weekend!

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.

At just the right time

I've posted before about how Jason and I love Council Collection week. It happens twice a year: everybody hauls their junk (furniture, old TVs, busted kids' toys, you name it!) out to the curbside and at some point during the week, big trucks come take it away.

But not before plenty of other folks come checking out the loot! In years past we've kind of made a date of it; cruising around, looking at our neighbors' cast-offs. Because we are ALL CLASS. This year though, we weren't looking for anything and didn't have any real interest in it. My heart just wasn't in it. But the Monday after my surgery, we took Grace on a quick trip to the park and spotted this desk on the way home.

I'd been tired by even that little outing, but spying it on the curbside, I perked right up! Life and spirit surged to the surface! My pulse quickened! My blood flowed with new energy and vigor! What wondrous place is this, with such free furniture in it!? It was time to carpe desk, er, diém!

It was just a few houses down from ours, and Jason hopped out to have a look. Perfect condition, the desktops opened and closed, and as they did I heard them cry softly, "Mama!"

"I'll drop you guys off and then come back," Jase said. "No! You have to get it now!! Before it gets away!" And because you don't argue with a convalescing bargain-hunter, he did.

And now, Ava and Nate sit there each afternoon and do their homework. Cutest thing. As I told Becky, free furniture really IS the best medicine.

How to have a lumpectomy, Part 2

Oh, but wait! You really should read Part 1 first!

So, secure in the knowledge that my sentinel node was mapped, I went back into the waiting room of the nuclear medicine department. A nurse mentioned that my surgery had been moved forward, and that instead of the 2+ hours that we thought we had left to wait, someone was coming now to collect my charts and take us up to pre-op. Oh! Oh.

This made me a little nervous...I had been thinking I'd more idle time on my hands for magazine reading. It felt a little like preparing for your scene in the third act and then finding out the director was skipping the second. You're on! But really, it was a good thing. Why delay it if you don't have to? Plus, I knew that it would be better for our families, anxiously waiting back in the States, where it was already creeping towards dinnertime.

We went back upstairs, I got back in my little bed with the warm blanket. A nice young guy came and wheeled me away, Jason following. Again, I felt silly being wheeled around, when I knew I could walk on my own. I suppose it's easier for the hospital staff, but it's like I wanted to get down and do some pushups, just to show I could.

And then it was all a flurry, really. The surgeon and team were whipping through their schedule for the day, and I was next. The anesthesiologist came over to meet me and ask me a bunch of questions, I signed forms, I put on a fetching paper cap to match my undies. And then the nurse asked if I was ready. Jason kissed me--and for the first time he looked a little forlorn. Standing there, holding my purse, with me being wheeled off. "Hey--go get a coffee," I said to him, "I know you've been dying for one! I'll see you soon."

I was wheeled to the little anteroom right outside the operating theatre. I could see my doctor in there, getting ready, and the anesthesiologist came over to put my IV in. There were a lot of people, and there was a hum of efficiency. I could hear music--it sounded like Johnny Cash--playing. "We usually have a little music going, is that alright with you?" he asked. I told him it was fine, after all, I wouldn't be awake to hear much of it. "Hey," I said, "Is everyone feeling good? Y'all had a healthy breakfast? Everybody happy?" "We're doing great," my surgeon said, "We could do this all day." "That's good to hear!" I said. I don't know why I felt the urge to, like, warm up the crowd. It's this thing I do--get all chatty when I'm nervous. Actually, I tend to get chatty whether I'm nervous or not. As if the burden to entertain is all on me? I'm surprised I didn't perform a stand-up routine. Thank God.

They brought me into the operating theatre, and I shimmied onto the operating table. Somebody gave me a shot of something. I remember wanting to stay awake a little longer. Not because I worried about being unconscious, but because I sort of enjoyed watching everyone work. That sounds totally bizarre now that I've written it down, but I noticed this same thing when I had the biopsy done. There's this part of you that's detached from the fact that all this is happening to you, and you're just interested in the process. I just wanted to look around for a bit.

Now, a technical sidenote, if you're interested. This is my understanding of the usual procedure for lumpectomies. Once the surgeon opens you up, he/she removes the sentinel node first. That's sent to pathology right away--to look for cancer cells. The aim is them to remove the tumor, with a sliver of healthy tissue on each side. This is called a "margin". There's no standard rule for how much of a margin to get--the idea is to get healthy tissue on either side so you know you've gotten the whole mass. My doctor told us he aims to get 1-2mm margins. Once the procedure is over, that's sent off for analysis, to ensure that the margins are clear--meaning cancer-free. If they're not, then they have to schedule another surgery to go back in.

Before the lumpectomy is complete, the initial result on the sentinel node is reported back. If it's cancer-free, as it was in my case, then that's all that is done. If the node had cancer cells, like it was with Becky, then the surgeon does what's called axillary dissection. This is when more lymph nodes are removed from your armpit for analysis. The number of nodes removed varies, but I was told it's usually between 2-9. This is of course more invasive and will require a surgical drain and a longer recovery time.

Anyway, the next thing I remember is the doctor calling my name, and me opening my eyes in recovery. He said something about no node involvement, and I murmured a response. Then he was gone, and I texted everyone. Then I opened my eyes again and realized...of course I hadn't texted everyone! I didn't have my phone. I'd dreamed that bit. So then I got confused if I'd actually talked to the doctor, or if I'd imagined the whole thing. Trippy!

Pretty quickly upon gaining consciousness, I felt a burny-throbby-scratchy pain on the side of my breast. It felt angry to me, in my hazy state of mind. A nurse came and asked me if I wanted some morphine. Um, duh? Sure! Why not? I'd say the pain was about a 7, on a scale of 1-10. But the nurse kept coming over and asking how my pain was, and kept topping off the morphine. So within about half an hour, I barely noticed it--maybe down to a 2. Another nurse came and asked me if I wanted to stay overnight--the doctor had said I could go home if I wanted to. I was so groggy, I was having a hard time making the decision. "You have young children, don't you?" she asked. Yes, I told her. "You should stay here tonight. It's better," she said firmly. Sometimes, it's really nice to have someone else tell you what to do. Yes, I said. I'll stay tonight.

And it was a good thing I did! I was very dizzy from the medication the rest of the day and into the evening. I couldn't lift my head without the room spinning. I guess all those drugs come at a price.

Recovery has been pretty smooth. I think I'm lucky...I only had one node removed, so I don't need a surgical drain, and my surgery was a lot less invasive than it could've been. The surgery was Friday; by Sunday I was up and about in the house. Doing laundry--seriously, what is wrong with me?

And Jason has been juicing. Juicing everything in sight and making me drink it. More on that later, my pretties. I have talked long enough, of boobs and boob-related issues.