Monday, December 3, 2012

Christmas in Oz: Things to love

Sure, I sometimes miss hot chocolate at Christmas, or bundling up to go out and see Christmas lights, but I do love Christmas in Australia. I've said it before, but the excitement of Christmas coming mixed with the relaxed vibe of summer is a great combination. Well, unless it gets too hot, cause then I have to cut someone. But mostly! It's great!

One aspect of the holidays that we love around here is Carols in the Park. All through December, pretty much every community puts on an outdoor carol sing. There's music, food, kids' entertainment, and Santa. People bring picnics, blankets to sit on--groups of friends will go together. It's like a summer music festival with a Christmas theme. Back in the US, I attended lots of Christmas carol services--but of course, they were mostly indoor or I spent them shivering outdoors. Those hushed church services have their charms as well, but we love the outdoor ones here.

Saturday was a very warm day, and because our house doesn't have air conditioning, we spent most of the day in the pool. I kept my crankiness at bay...but just barely. By evening, an air-conditioned ride in the car sounded perfect, so we drove to a Carols in the Park put on by a local radio station. Several friends were already there, so we all sat and listened to the music together. There was also ice cream.




There were some kid's games and activities on offer, and Nate and his buddy wanted to ride in the little jeeps that were set up in the parking lot. When they got to the front of the line, they were told that they had to have an adult ride with them. Lucky, lucky me--I was the only parental figure in the area. So, picture this-- (or actually, don't.) I had to sit up behind them on the back of the jeep, and put one leg on either side of the driver, so I could have a foot on the gas and brake pedals. And also lean forward to grab the wheel if necessary.

Hmmm. You might notice from the photo above, I was not attired for jeep driving by-proxy. And that dress did not have a lot of "give" to it. I looked at the guy running the ride. "Um, I'm not exactly dressed for this," I said. In trademark Aussie fashion he waved away my concern, "Aw, she'll be right!" And off we went, round and round this little track, I'm sure with me flashing the unfortunate bystanders each time. Of course, the boys jerked the wheel too hard before I could stop them, which caused us to hurtle into the tires set up in the center of the track. The attendant was a little annoyed with us, so not only was I scandalous, I was chastened for my failure to supervise, too! And then my flip flop broke when I tried to modestly disembark the jeep! You just can't win sometimes.

Wardrobe malfunctions notwithstanding, it was a lovely evening. The music was beautiful, the lights were sparkly, the weather was cooling down (mercifully).  Christmas in Oz is pretty great.

And luckily, I'll probably never see the people at the jeep track again! And that is the best gift of them all.

Saturday, November 24, 2012

Around here

We didn't do a Thanksgiving feast this year, but happy Thanksgiving to all my American peoples! And happy weekend to the rest! After scrolling through dozens of food photos on Facebook yesterday, I told Jason that maybe we should've cooked a turkey with all the fixins after all! I am having casserole envy.

Last night I spent a relatively restless night sleeping in Grace's room. She came down with a little tummy bug and fever yesterday afternoon and we have an unspoken agreement that when she's sick, Mama sleeps on the other bed in her room.

I am less like a mother though, and more like an indentured servant. Or is there much of a difference? All through the night, she'd call out at random intervals for me to adjust her blankets, hand her her water bottle (which was perfectly within her reach), or sing her a song. It was clear she was uncomfortable with fever, but I could also tell she was milking the situation, just a little bit. When she woke up for the day at 6:47am, fever-free and full of energy, I handed her off to Jason and went back to sleep, still in the extra bed in her room.

Today, Nate and I ran out to the mall to pick up a few things. On the way there, he mentioned that his stomach hurt. I felt his forehead and it was definitely warmish. So I found myself buying him a new Zac Power book to read and a $3 can of imported Canada Dry. (What? Ginger is good for the tummy, right? I was walking past the "international food kiosk" at the mall and it was an impulse buy.) Of course, he didn't like how it tasted so now there is $2.80 worth of ginger ale sitting on my kitchen counter, condensation slowly spreading outward in a little pool. And the new book? It's sitting on the coffee table while he watches Phineas and Ferb. Oh well.

How are you? I hope that someone is seeing that all your needs, real or imagined, are attended to.


Monday, November 5, 2012

I know, right now you can't tell

On my berfday, in September. 36!

Friends! I'm still here! How are you? I haven't blogged in months now and I have no good excuses to offer. Um, the dog ate it? My blog was shut down for revealing secrets of national security? I've been on a whirlwind book tour? I've been in the Big Brother house?

No, none of the above. First I was kind of in a funk, I guess. Well, and then life got really busy. And then blogging became one of those things--like when you haven't replied to an email and then too much time passes and you're overwhelmed at the thought of replying cause it's been so long...like, what do I say? How do I sum it all up? Anyone? No? Just me, then.
Grace remains totally fierce. So, that hasn't changed.

July and August were packed with activity, plus I was still feeling pretty worn down from treatment. My mood was pretty low. I thought maybe it was due to me starting Tamoxifen--it's hormonal medication, so I thought maybe my mood swings and irritability could be attributed to that. When I talked to Becky about it, she said something like, "Maybe...but it may also be that fact THAT YOU'VE HAD CANCER." Oh yeah. Maybe it's that. Turns out, it takes some time to wrap your brain around that fact.


I started to feel more like myself in September. I've been doing some thinking about how I handled the time period right after my diagnosis and surgery. I look back at my calendar from that time period, and shake my head at how busy I kept myself. I mean, it was stupid. There were lots of reasons for it--a coping mechanism I'm sure, and also wanting to work while I still felt good. Plus, the world continues to turn, you know? Stuff keeps happening. And at that point, I didn't know what my treatment would entail or how sick it might make me, so I wanted to keep going while I could. 

Yeah, that was kind of dumb. And it came back to bite me. But maybe I'll write more on that later!

Last week was Jason's 38th birthday. (On Halloween!) We had a great day together and went to see Matchbox 20 and INXS play that night. It was really fun! When Matchbox 20 started playing their song "Unwell", I leaned over to Jason and whispered, "This has been my theme song for the past few months." I'm not crazy, I'm just a little unwell...I know, right now you can't tell. But hang around and maybe then you'll see a different side of me.

Don't worry--I'm not about to get all emo on y'all...wearing lots of eyeliner and quoting Depeche Mode or something. But I have felt just a little unwell these past few months. Nothing terrible...I'm quite fortunate, in fact. But nevertheless, things have been...off. I'm sure everyone feels that way from time to time. But over the last 6 weeks or so, I've felt a lot more like me.


I'll be back soon. Thanks to all of you who've checked in with me over the past few months! You are real sweeties. Life continues here in Oz, and it's pretty dang fine. (I was gonna say "pretty damn fine" but then I didn't want to offend some of my church members that read here. So I decided I better not say it. Oh. Wait.)

xoxo

Thursday, July 5, 2012

I need all the help I can get

Me, towards the end of radiation treatment, hospital gown in hand. As you can see, I wasn't kidding about the Uggs-puffy vest-no bra-last night's ponytail combo. Stellar. Sorry, boys! She's taken!
On Monday, I went to see my GP. In order to meet with the oncologist to start Tamoxifen, I needed an official referral letter from the GP, so I made an appointment. (It's a Medicare billing thing, but anyway.)

I hadn't actually been back to see her since a visit right after my diagnosis, back in February. Over the last several months, we've been fortunate enough to be pretty healthy as a family, and the one time Nate was sick, Jason took him to the doctor.

In telling the story of how I found out I had breast cancer, I often tell people how, after that initial ultrasound, the radiologist who read the scan recommended that I return for a second scan in 6 months' time. That there were a few cysts, but nothing to be really concerned about. I would've followed that recommendation without worry; after all, I was only trying to be responsible in getting that ultrasound anyway.

But when I saw my GP the day after the scan, she read the report and then kind of stared into space for a second. "You know," she said, "I think you should consider getting an appointment at the breast clinic in the city, just to check it out and make sure everything is fine." And so I did, the next day. And you know the rest.

This past Monday, she and I chatted about my radiation treatment, while she printed off the letter I needed. I told her that I'd been wanting to thank her for that initial recommendation. It set off the chain of events that lead me to find that I had breast cancer in an early stage, instead of finding it much later and perhaps with a more grave prognosis. "I've often remarked to others," I told her, "how grateful I am that you referred me to the breast clinic, when you could've easily just told me to wait 6 months. So, thank you." (And as an aside, the remarkable thing to me is that nothing in that initial ultrasound turned out to be cancer...it was a lump that wasn't even picked up in the original scan!)

She kind of shook her head and told me she couldn't believe it when she'd gotten the call from the breast clinic. "The thing is," she said, "I could've just as easily told you to get another scan in 6 months-I've certainly done that before. I don't know what made me recommend that you get it checked out."

Now, me being me...of course it's my belief that God graciously intervened in that whole scenario. I don't understand it, but I'm thankful all the same. But even besides that, I've been thinking since then about that little nagging voice, that sense of intuition, that gut instinct that people have when it comes to their particular field. My oncologist used this kind of language today when I asked him a question about an aspect of my treatment. He responded that there was wasn't a big body of research for this particular thing I was asking, then he said, "But my gut instinct is...". It's what Malcolm Gladwell talks about in that book Blink. (Which, incidentally, I've never read. Do you ever do that? Summarize books or movies you've never actually read or seen?)

But from what I understand, Gladwell talks about this idea of informed intuition. He calls it "thin-slicing", the ability to assess a situation from a very brief window of exposure to it. Where a person can have a hunch, a snap judgment, a feeling about something that feels spontaneous, but is actually fed by years of their own experience and study. So that, even though they can't necessarily articulate why they have the opinion they hold, they just do. That all those years of study and experience combine in a subconscious moment--a blink, I guess. Me being me again...I think there can definitely be a divine element at work here, too. Not some kind of magical voice necessarily, but a nudge when you need it. Gladwell's point is that we should all tune into this intuition...that we all have it in some way. At least, I think that's his point. I haven't read the book yet, you see.

I've found over the course of the last several months that I'm relying quite a bit on the intuition of these folks. Of course, there's more than that to back them up. Years of research, my own pathology reports, data from thousands of other cases, an established standard of care--it's not like we're operating on spit and fairy dust or something. But, I feel better knowing that they are applying their own "hunches" in taking care of me. In fact, I was talking with my radiation oncologist a few weeks ago about scheduling followup appointments with her. Along with my GP, there are 3 other doctors that are kind of managing different aspects of my treatment. She said something like, "I know it's a hassle to have all these appointments, but we'll space them out, and they'll lessen as time goes on." And I said, "No, I actually like it. The more smart, experienced people looking at me and my case, the better." Team Amy is always looking for more star players. Clearly, it takes a village of experts to keep me operating at full capacity. So we all need to keep our heads in the game. Got that?

I think I'm gonna read that book.


Tuesday, June 26, 2012

And just like that

What!? Don't look at me like that. So, I took an unplanned month off. These things happen. To be honest, I was probably too fussy over the last month to say anything y'all wanna hear, anyway.

I had my last day of radiation treatment last Wednesday. Yay! I baked brownies for all the radiation treatment staff and turned in my hospital gown. We all signed each other's yearbooks and promised to K.I.T. over the summer.

It all went just fine. I'll tell you more soon. I'm posting now to say hi, and I missed you. And also cause my dad just sent a very snippy email to my sister and me:

"Saturday will be one full month since either of you has blogged. In recognition of that landmark date there will be no cake and cocktails on the deck at the Briarpatch. Please make no plans to attend.

Love,
Dad"

And because let it never be said that I am not a people-pleaser, LET IT NEVER BE SAID, I ran right over here. Bottom line: I'm doing pretty well, I did not receive the mutant superpowers promised to me in the brochure, but life is good.

More on the details tomorrow!

Xoxo

Wednesday, May 30, 2012

How it plays out: Radiation treatment and fashion sense


Monday: "Okay! Just cause you're going to the hospital everyday doesn't mean you can't look nice! Get those skinny jeans on! Let's wear some eyeliner! And your new lip gloss!

Tuesday: "Hmmm, I don't really feel like putting makeup on today, but this headband is cute. Oh, and I think I'll wear my new boots."

Wednesday: "It's cold. I don't wanna take my Uggs off. And these yoga pants are perfectly presentable."

Thursday: "I mean, it's not obvious that I slept in this shirt. I'll just put a bra on and wear it."

Friday: "Okay, so I slept in this shirt, wore it yesterday, and then slept in it again. It's not visibly dirty. Why put on a bra to just take it off again at the hospital? Where's my puffy vest?"

My friends, we are just steps away from me going in my bathrobe. Well, they mention fatigue as a primary side effect of radiation, but no one warned me of a progressive, weakening ability to give a flip about what I'm wearing/how I look. I think this issue alone needs its own ribbon. Ideas?

Monday, May 28, 2012

Smoke 'em if you got 'em...or not

This evening, I took the kids out to our local office supply store. I needed to buy an electric pencil sharpener. Which, by the way, do you have any idea how expensive those suckers are? $45 for a battery powered one! Apparently the electric ones are a couple hundred bucks? Whosa whatsa? I can't even. But anyway, that's not even what I meant to say.

As we drove, a news brief came on the radio about a prison nearby that has gone smoke-free as of today. As in, none of the prisoners are allowed to smoke anymore. Can you IMAGINE what that place will be like over the next few days? I get the shakes just thinking about it.

All Ava heard were the words "smoking" and "prisons". So she goes, "Wait, are prisoners allowed to smoke?" I hadn't really been listening to the report, so I said, "I guess they used to, but maybe not anymore. I think in most prisons they can." Meanwhile thinking...there is just no way you can realistically be prepared for the variety of topics that get thrown your way as a parent. It's a good think I took that Sociology class on Correctional Systems! The value of a liberal arts education, right there.

Then Nate says, "Well, they've gotta do something to make prison more fun." 

And it was one of those moments where you just wanna press the pause button, and truly savor, marvel at what comes out of your kid's mouth. (Maybe in fact, like a smoker savors a smoke? Not that I'd know.) Because as hilarious as that statement was...the whole idea of prison being fun defeats the purpose, right? Which Ava was quick to point out. As hilarious as it was, I totally got the heart of what he meant: Geez, those guys are locked up already. This just seems like insult to injury.

And the fact that my 6 year old son, with non-smoking parents and almost no exposure to it, interpreting it as fun? When in fact, all he's ever heard about smoking is how bad it is? Well, like I said, I was marveling.

I laughed out loud, I couldn't help it. It delighted me, in the way that something unexpected and strange does. I know it's cliche to say "I don't know where he gets it from", but I DON'T KNOW WHERE HE GETS IT FROM.  Ava scoffed at the idea of prison being fun. Nate was quiet a moment.

"Ok, then what about lollipops?", he said.



Tuesday, May 22, 2012

A getaway and a lesson in gestures


Last Friday, I didn't have treatment and Ava's netball game was cancelled, so we took the opportunity to get outta town for the weekend! Jason and his dad found a house for us to rent near a town on the NSW Central Coast called Hawk's Nest. The photo up there of the bay was in our backyard. I know. Such a treat.

There were hammocks in the backyard too, and Ava and Nate spent a long time there, pretending to be pirates. Even though winter is approaching, it was still fairly warm and the kids played at the beach and in the waves to their hearts' content. We ate fish and chips and pizza. And I took some naps and read magazines I found in the house from 2010. 

It was awesome. 

I shouldn't have left that crotchety sounding post up at the top for so long! Thanks for all your sweet words. I promise, I'm not wallowing in misery. We are rolling right along pretty well. I'm almost halfway through my radiation--had #14 today. Yes, it's a drag some days, and I'm extra tired but it's really okay. Plus, Jason drives me most days so we have lots of time to chat. Or not! Depending on my mood!

Yesterday, we took the kids to the shops with Jason's mom. On the way home, Nate ominously announced he "knew all about the rude finger."

I was like, whosa whatsa? And then he solemnly extended his middle finger for me to see. Such ceremony involved. 

You guys. Maybe you had to be there...it was so funny. "What makes this finger so rude?" he asked. Then he and Ava started laughing and pointing their middle fingers at each other and saying, "Watch out! I'm being rude to you!"

And then I was like, okay I better shut this down. "You guys, that is more than just rude. If you do that to someone, it's like calling them a bad name. It's offensive, it's like a bad swear word but with your hands. Don't do that anymore."

Except I think I accidentally made it sound cooler, especially to Nate. I'm sure now he's thinking, "Hmmm, how can I leverage this knowledge?" Lord, help us. 

I confess I do the rude finger from time to time. Deplorable! But mostly to
Jason, and mostly when he's being annoying and deserves it. Like when he beat me at a card game and made the face when he won. Or when points out when I'm being too dramatic. As if! That kind of behavior cannot go unanswered. So I don't think the rude finger counts in those scenarios? 

Maybe I can work it into my next sermon.

Maybe not.

Sunday, May 13, 2012

Snippet


I'm feeling better now, thanks. You know how it is! So ragey and stabby! Friday, I went and bought myself 2 pairs of boots for Mother's Day. When I got home, I showed Jase and said, "I bought these shoes. You got anything to say about that?"

That's how it is. You know, don't you?

P.S. Happy Mother's Day, mamas. Boots for all!

P.P.S. Sorry about the PMS TMI.

Monday, May 7, 2012

4 down, 29 to go

I started my radiation treatments last Tuesday. They say I should have my mutant superpowers by the end of next week! So, that's nice.

In a beautifully choreographed grandparent changeover, I dropped mom and dad off at the airport about 2 weeks ago and picked Jason's parents up. So, as far as our kids are concerned cancer treatment means: lots of treats, all grandparents arriving from America, extra TV time, and people dropping off cookies at the house. It's good to be them.

So Mike and Jan happily watch Grace each morning and Jase takes me to my treatment. I could drive myself, but the parking can be a major headache at this hospital, so it's nice to have him just drop me off at the entrance.

Today was only my 4th treatment, but I felt super tired and sluggish for a good portion of the day. Fatigue is the primary side effect of radiation treatment. Well, that and the superpowers. So Grace and I sat on the couch and snuggled for a bit after her nap. That was lovely, except I was forced to watch the most irritating kids' show ever, Caillou. I hate it with the burning heat of a thousand suns. (Speaking of radiation.)

Do you know this show? I'm posting from my phone, otherwise I'd link to it. Basically it's about the whiniest, most irritating 4 year old on the planet. He fusses when his friend accidentally bumps him, he complains about his little sister, he whines about going camping, he's afraid of clowns. This kid is incapable of just enjoying life as it is. And I am like, MAN UP, CAILLOU! No, your grandpa is NOT gonna eat your veggies for you. Just deal!

I even suggested that we watch Dora instead, so you know I was desperate. But Grace prevailed, as usual. I'm pretty sure she already has superpowers.

I'm not sure if this malaise is due to treatment, or just the fact that it's Monday! Mondays are usually tired days for me. But other than that, we are trucking right along! Just getting used to a new routine for the next 6 weeks or so.

I'll fill you in on treatment more later. Let's just say, lots more people are gettin to see my boobs.

LUCKY.

Sunday, April 29, 2012

Ava, third from left

Ava had her first netball game on Friday night. I'd never heard of netball before we moved to Australia, but it's very popular here. Pretty much every girl plays netball in the course of her girlhood. This year, we wanted her to give team sports a go, so netball it is!

The courts are in a park that's set back in the bush. I mean, you turn off the main road and drive through this darkened neighborhood, and just when you're thinking a haunted house must be around here somewhere...you see the turnoff for the park.
And come to find out, everyone was there. If you've been wondering where all the people have gotten to on Friday nights? Apparently they're at netball. Because, back in the wilderness, there were hundreds of cars parked and kids running to play tennis and netball and lacrosse. And parents and reluctant siblings and coaches.

There are about 15 courts, and because they're just sorta plopped into the forest, everyone stands around court side to watch their team, or sits on big rocks off to the side.

Ava had a blast. It helped that her team won! It was fun watching her get the hang of the game. Each player has a player on the opposing team that they're supposed to cover, or mark. (Sorry, I'm still figuring this out.) Anyway, the other team had identical triplets. So half of the team looked the same! Clearly a tactical advantage! "It was a bit confusing," Ava told me later.

This will be our Friday night for the next several months. It was fun! Jason has been waiting for our kids to play sports since before we even had kids. He stood on the sidelines, shouting little "tips" to Ava. Keep in mind, this is the first netball game either of us have ever watched.

I sidled up next to him. "Babe? Let's observe the culture. Do you see other parents coaching their kids, over the voice of their actual coach?" He grinned. "I know, I know. I'm just excited. I'm American--it's what we do." "I know you are!" I said, "But let's tamp it down a bit, so people will still like us."

With everything we've had going on over the last few months, it was really nice just to be there and feel normal. Which we are, of course. But you know what I mean, right? It was chilly out there, and I thought to myself...how grateful I am that I get to keep my hair. A windy winter night out there with no hair wouldn't be so nice.

The things you think of sometimes.

Then, the game was over, and won, and it was time for ice cream! Jason's parents are here, and we all trooped back to the car. And in one of those rubber-meets-the-road parenting moments, we had to remind Grace that she couldn't have any, because she refused to eat even three (3!) bites of dinner. (Mom, we gave her 50 million chances, I swear. Don't hate--appreciate!)

So she had a level 2 meltdown (tough, but it's no level 3) and Jason dropped her and me at home to go to bed while they went on. After all, who wants to watch others eat I've cream when you don't get any?

Are we so mean? Don't worry...I confess to you now that I gave her a lollipop before 8am the other day.

Um, I'm American? It's what we do? I really have no idea. The things we do sometimes.

Wednesday, April 18, 2012

Getting On With It

We just got back this evening from a quick trip to the Hunter Valley; just Mom, Dad, Grace, and me. The Hunter is a wine-growing region about 2 hours out of Sydney, and it is beautiful. In spite of it raining off and on, we had a great time. We took the "tourist route" to get there, which was a windy, two-lane road through tiny towns with names like "Bucketty" and wombat crossings. Oh--and this, at a roadside sculpture garden:
Australia is known for its massive bull ants, and this cheeky interpretation caused me to pull over, do a U-turn, and go back so we could get a photo.

In my last post, I mentioned that I had some good news to share with y'all. Well, my sister scooped me and blogged about it first. But that's okay, as she's blogging everyday this month, and we all know how challenging it can be to come up with interesting content. And it's like I always say. If my cancer diagnosis and subsequent treatment can provide content for just one blog post, then it's all been worth it. That's what it's all about, after all. Did you know I always say that? Just kidding, Beck! Actually, please read Becky's post if you will...her description of all this is better than mine.

Two months ago, when we had our first post-op meeting with my surgeon, the one where we talked about chemo, he also mentioned the possibility of being screened to see if there was a genetic element involved in my cancer. Here's a super-quick, most likely flawed summation: there are two gene mutations that have been identified as having a major role in breast and ovarian cancers. Those mutations can occur in either the BRCA 1 or BRCA 2 genes. Researchers think that these genes are meant to serve some protective purpose against cancer. (I'm not sure I'm saying that correctly, but that's the gist.) Sometimes you might hear someone say they're getting screened to see if they "have the gene for breast cancer". What they mean is, they're being screened to see if they have the mutation in that gene that correlates with breast cancer. Most breast cancers (about 95%) are not related to BRCA1 or BRCA2. But if you have one of those gene mutations, it has serious implications for your likelihood of developing cancer.

Due to both Becky and me having breast cancer before the age of 40, my doctor passed my name on to the Familial Cancer Centre at a nearby major hospital. A week later, one of their genetic counsellors called me and took a family history, asking about cancers in our family, about aunts and uncles and siblings and grandparents. Based on the information I gave her over the phone, she asked if I could come in and meet with them face-to-face. Which Jason and I did the following week.

We talked at length with a genetic counsellor who walked us through cell reproduction, how cells with these mutations reproduce the same faults, again and again until it becomes likely that a tumor can develop. We looked over a family tree they'd drawn up, based on the information I'd given over the phone. We talked about statistics of cancer and cancer reoccurrence if the BRCA1 or BRCA2 mutations are present. She told me that, in their estimation, there was a "fair chance" that I could have the mutation. Did I want to be tested?, she asked. Not everyone wants to know. Yes, I said. I definitely wanted to know. As much as you can "know", anyway.

At this point, they are careful to manage your expectations of what this test means. There is no "negative", there is only "inconclusive". Inconclusive means that they could find no mutation in those two genes, but there could be something elsewhere that's contributing. The human genome is pretty big, after all. If the test is positive for the mutation, I could choose to be closely monitored and checked each year to try and catch any new developments in their earliest stages. Mammograms, breast MRIs and such. Or, I could opt to immediately have a bi-lateral mastectomy, removing all breast tissue. This is called "risk-reducing surgery". And eventually, I would need to look at having my ovaries removed as well. The counsellor asked me, if the test is positive, would surgery be something I'd consider? I think they just want to make sure that it doesn't come out of left field for people. I told her that surgery would certainly be on the table if it came to that.

Then, she called the lab to see if they could rush the results for me. You see, this initial testing usually takes 3-4 months to complete. The lab said they could do it in 3-4 weeks. Then I went to have some blood drawn and we went home. That was that. Well, except for the few weeks of wondering and waiting. Actually, it wasn't too terrible, the waiting. I was also waiting at that time for the Oncotype Dx test results--the one which predicted a recurrence score for this current cancer--and I was preoccupied with that. Actually, ha! Now that I see that written...okay, I was probably a bit stressed.

Last week, Mom and I took the kids to the park. I was backing the car into a parking spot when my phone buzzed with an incoming call. I recognized that it was the hospital, and answered it as I turned the car off. The counselor I'd spoken with a month ago was on the phone. My test results were in, she said. Could I come in first thing tomorrow morning to discuss the results?

And here is where, for the first time that month, that I got nervous about the genetic stuff. I'd known they wouldn't give me the results over the phone either way, but the fact that they were squeezing me in so quickly gave me pause. Pulling the kids' scooters and helmets out of the back of the car, I scheduled the appointment.

Well, you already know it was good news. Jason and I got there the next morning, and our counsellor walked us back to meet with the geneticist, who'd been away during our first appointment. I had one final flutter when the counsellor said, "I wanted you to meet with the doctor, because I know you'll have a lot of questions." "Holy crap," I thought, "That means positive." But then she said, "I think you'll be pleased with the results." The test was inconclusive, meaning that no mutations were found on BRAC1 or BRAC2. Simply put, that means that I go on with treatment as planned, that I don't immediately need to consider surgery, and that I don't need to start thinking about what this means for Ava and Grace, for Becky and Laura, and for my mom.

The doctor did encourage me to stay in touch with them--to let them know of any changes in our family history, and to come see them in 10 years or so, when my girls are older. She said that when there are advances in either research or technique they often re-test samples, and that they would contact me if they ever found anything. She was encouraging, but also very clear: they know only so much about how genetics plays into cancer. There could be a BRCA3 that they haven't found yet.

But I'm not worried. Truly, I'm not. That doesn't mean that I'm convinced there's no chance of a genetic component at play. It's more that I feel...what else can we do? We've done all we know to do, and now I just need to have my treatment and get on with things. The way I see it, it was completely providential that this cancer was found when it was--another year easily could've gone by. And I feel like I will know things when I need to know them. Is that an over-simplification? Definitely. But it is working for me. I'm in good hands.

Friday, April 13, 2012

I Didn't Ask To Be Born!

When my mom and dad booked their flights to come out, we tried to time it with when we thought I'd be having treatment. So that they could help with the kids, house, and whatever else. They were anxious to get here and I was no less anxious to have them here, too.

Little did we know that things would get pushed back a bit, due to me deciding to have some extra testing done.(I'm posting from my phone, so I don't know how to link to it, but you can scroll down 3-4 posts to see what I mean, if you want.) Not needing chemo was a very lucky break that I hadn't dared to hope for, but waiting for that determination pushed radiation treatment back.

I went last week to get setup for radiotherapy--got two little tattoos like the gangsta I am in my heart of hearts--and am due to start daily radiation treatments on May 1st. About a week after they leave. Sad face.

The southern girl/middle child in me is fighting the impulse to apologize that they came all this way to help for a 7 week stay and then I haven't even begun treatment yet. I know, I am ridiculous. I have never claimed otherwise.

The reality is, though, as I was telling Mom today, they were here for a lot of angst and anxious time for me. Which is truly what I've needed most, I think. The decisions about genetic testing, and the test to determine if I needed chemo, all the processing after multiple doctor's appointments, the what-ifs that inevitably come up during this process.

So even though I've felt great physically, of course it's been an emotionally draining time. (Hello, obvious statement of the year! Did ya know, breast cancer diagnosis is stressful?? I'm here to provide you with this helpful info!) So, it's been invaluable to have them here--not just for me, but for all of us. Because let's be honest, the amount of peanut butter and jellies that Grace requires in one day alone is enough to drive me to drink. Sometimes, you just need another pair of hands to spread the Skippy. That phrase should go on a T-shirt.

We've had a great time with them here, we've gotten out and about a lot, we've played lots of Dominion, we've barbecued, we've just hung out. It has made all these doctor's appointments so much easier to arrange, not having to scramble to figure out childcare.

Now that mom and dad are retired, they might be interested in supplementing their income. So, if you have a need for grandparents to stand by in a medical or family crisis, let me know. Their rates are reasonable, and might I add? They are professional educators, so your kids will be well tended. However, they require a healthy supply of Wild Turkey and Diet Coke. But not together. What are you, a heathen?

So, thanks Mom and Dad! I think of you as my own parents, and I wanted you to know.

More from me soon! I should also add, Jason's parents are coming soon, so the outpouring of grandparent love will continue! Oh! And we got some good news yesterday, I'll be back tomorrow to fill you in. Not trying to bait you, just tired tired and must sleep, must sleep NOW. Xoxo

Saturday, April 7, 2012

From me

Happy Easter.

I love you all like I love guacamole. More, even! And candy corn. But not together, cause, gross.

Not you, gross. Guacamole and candy corn, gross. I'm ruining the moment we were trying to have, aren't I? Trying again...

Happy Easter! May God bless you more than you thought He would.

Thursday, April 5, 2012

Telling it like it is

Driving home tonight, with Ava and Nate in the back seat.

Ava: Who knows? Maybe one day I'll be rich and buy a limousine.

Me: Maybe so. But if I was rich, there's a lot of other things I'd rather have than a limousine!

Ava: Oh, you guys won't be rich! Your chance has passed.

Me: Wait! Our chance passed already?

Jason: Really? So we're just done, huh?

Ava and Nate: (laughing, totally delighted with themselves)

Nate: And you'll probably never be famous, either.

Me: Why do you say that?

Nate: You'll never be famous cause you work for a church. Nobody who's famous does THAT.

Me: Ooookay. Well, at least now Dad and I know what to expect from life! Thanks, guys.

Ava: Yeah, *totally* passed.


And yet, I think we might still have some life left in these old bones.

Thursday, March 29, 2012

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?








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 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





Tuesday, March 13, 2012

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.

Saturday, March 10, 2012

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!

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.


Monday, February 27, 2012

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.

Thursday, February 23, 2012

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.


Monday, February 20, 2012

How to have a lumpectomy, Part 1

Thursday evening, the night before my surgery, a nurse called from the hospital to give me my "arrival instructions". Basically, I had to be there by 7am, I had to have no food after midnight (just like a Gremlin!), and I couldn't drink any fluids after 4am. It's the no liquids part that made me nervous. Skipping breakfast and lunch isn't such a big deal, but what if I got thirrrssstyyy? No one likes dry mouth! Our friends Matt and Sarah were over; they'd come to make us dinner and then were gonna stay overnight to help with the kids the next day. Sarah is a nurse. "Are they pretty serious about that no-liquids thing?" I asked her. "Umm, yeah," she said. Blah blah anesthesia, blah blah aspirating into your lungs, whatever. Fine.

So I decided to wake up at 4 and drink a buncha water. Guys, this is tip number one: don't do that. Cause then you will immediately start thinking about the day ahead, and your brain will rev into full awake mode, and you will not be able to go back to sleep. And then shortly thereafter, you are really gonna need to pee. And after that. And, a little while after that.

We were model patients and arrived promptly at admissions at 7am. The room was already packed with people that presumably had surgeries scheduled for that day--most of them outpatient, or day surgeries, as that was where we were supposed to check in. I amused myself by looking around and playing "guess the procedure" for each person. Hmmm, tonsillectomy! Questionable mole! Prostate!

Then they called us over and checked us in. "And what procedure are you having today?" the clerk asked. Almost like a waitress, as if I'd been given a menu to select from. "I believe I'll start with some node mapping, please...and then the lumpectomy is looking pretty good to me today."

Eventually we got called back into what must be a staging area. I was weighed, I was given a gown and robe to change into, and as some of you saw on Becky's blog, I was given these.
Not even kidding, I thought it was for my hair at first. That would've been awkward. And to think, I'd already followed the proverbial advice to wear nice undies in case you ended up in the hospital! All for naught.

They assign you to a bed at this point, and a very sweet nurse came and tucked me in with a warm blanket. But the funny thing is, I didn't really want to lie in the bed. I feel fine, I kept thinking. That's been the surreal thing about this process. I am very healthy and feel great, but.

Then the nurse walked Jason and me down to Nuclear Medicine. (I cut a fine figure in my bathrobe and running shoes, don't you worry!) "Nuclear medicine" made me envision haz mat suits and test tubes and Russian scientists...but unfortch I didn't see any of that. It is here, my friends, that the "sentinel node mapping" takes place. And in case you ever need to understand what that is (and I hope you never do!) I'll tell you a little bit about what it's like. (But if you need, like, actual medical information, get thee to Google! I majored in Psychology.)

When surgeons remove a tumor from your breast, or perform a mastectomy, they also remove and test the sentinel lymph node for cancer cells. Your sentinel node is called such because it's the first node that any cancer cells would reach if they were spreading from the original site. To put it simply, if the cancer has spread in your body, it will almost certainly be in the sentinel node. So testing the node is a good indication of the stage of cancer you are dealing with.

Sentinel node mapping is how they find the right node. Ya got lotsa nodes, dontcha know. And the sentinel is not always the nearest in proximity to the tumor. And here is where the fun begins! After checking in, I was brought into an examination room and lay down on the table. The nurse chatted me up for a bit, then the doctor came in with four different needles. The needles are very small, and each contain about .2ml of radioactive solution. The process is this: the radioactive liquid is injected, some time goes by, then they X-ray the area to see where the fluid has traveled. The sentinel node "lights up" with the fluid. I've since read that there are different techniques in finding the sentinel, but this is what was done with me.

While I chose a strategic place on the ceiling to stare at, the doctor injected each syringe into different areas of the breast. Unfortunately, they can't use any kind of local anesthetic with this procedure--it effects how the fluid moves through the tissue. That was kind of a bummer to hear.

I've been told that each person experiences this differently--a lot depends on your pain tolerance as well as the way the nerves are arrayed in your breast. For me, it was about a 4 on a scale of 1 to 10. Not what I'd choose to do on a Friday morning, but not awful either. One of the shots hurt more than others, and the fluid stings a bit going in, but it was okay. Just okay. However, for someone with problems with needles, it would be good to have a hand to hold at this point.

After the needle part was over, the nurse put a bandage over the area and told me that I had to massage it for 10 minutes. This was very important, she said. I must massage it to get the fluid moving through the tissue so that the imaging could see what it needed to see. That was slightly awkward, but whatever! Just me alone in a doctor's office, massaging my boob. Like I've done so many other times.

Eventually, they came to get me and took me to this ginormous machine. It looked a bit like an MRI machine, where you lay on the mat and it slides you under the imaging stuff. These are all the technical terms, of course. Attached to the machine is what looks like a big panel, two of them, and the technician moved one down, down down, very close to my face. "Sorry," she said, "If you had bigger breasts we wouldn't have to get it this close." Lady, if I had a nickel for every time I've heard that one. (Sorry. I don't even know what that means.)

Then I had to lay very still for about 10 minutes. Don't even think about your nose itching, cause then it will and there's nothing you can do. Nooothiinngg! Then she adjusted the machine and I laid there for 10 more minutes, with the panel on the side. You might think this is enough radioactive imaging of your boob. But it isn't! Silly girl, what do you know? Then you go sit back in the waiting room and read magazines for half an hour. Then you go back in there and do it all again. Except this time they end with taking a 3-D picture. Just like Avatar! This time the machine and the panels move and spin around you slowly and it really is better to close your eyes. Cause that's a bit disconcerting. I'm not prone to claustrophobia, but if you are--best to just keep your eyes closed, cause the panels get pretty close to you.

At this point, the doctor came into the room, and referencing some incomprehensible blobs on the imaging screen, drew on my boob with a purple Sharpie. Radioactive fluid and million dollar equipment and it ends with markers.

I'm very proud to say that the technician told me it took much less time to map my sentinel node than normal. I smiled and said, "Well, let's be honest, that fluid didn't exactly have heaps of tissue to work through." She acknowledged the truth of this, but said it was mostly because I had massaged it so well. "We get some much older women in here who just aren't comfortable doing that," she said in a confidential tone, "It's a generational thing."

Ahem. I think that's a good place to stop for now.