Aztec 3

Monday, March 31, 2014

Technicalities

After a much needed spring break away with our little family it was back to business as usual -- "usual" post-diagnosis -- with test results, appointments, and more waiting. Actually, there were some developments while on our trip, because as it turns out you can't actually leave cancer behind no matter how hard you try. As we headed out of town I called the plastic surgeon's office to schedule my pre-op appointment only to discover that my surgery never actually made it on his schedule. Coordinating medical stuff is hard, not just for the patient but for the physicians and staff. I know this because already several balls have been dropped in my care and it all comes down to communication. While it's frustrating, it's something I understand. I've seen Best Husband Ever (BHE) deal with all of this before in trying to coordinate care for his own patients, so I try to be understanding and keep in mind that everyone is fallible and has a lot going on. It's also taught me though to be more active in my own care and to check and double check dates, information transfers, and decisions. It doesn't help anyone to assume that everything's just taken care of. Long story short, my surgery got pushed from April 2nd to April 8th. It's an inconvenience but so is cancer. I think it's crucial to be flexible through all of this. 

We got big test results while on spring break in Colorado. I was hanging out looking at beautiful views, waiting for CB (our 8 y/o) to get back from ski lessons, when I got the text "call me when you get a chance" from Kick A** Surgeon (KAS). I knew she was calling with the results of my Oncotype DX test. Lump in throat. I set SJ (our 3.5 y/o) up with a huge pile of snow to climb on and tried to find someplace quiet out of the wind. I don't remember much of that phone call other than that my score was an 8 and that meant the chance of recurrence was very low. The threshold for "low" is 18. I swear the sun got brighter and the air fresher at that moment. I know I could breathe a lot better! I think BHE almost cried with joy/relief when I told him the good news. Not that this test dictates everything but had my score been high I would have started chemo when we got back home and I would've had a lot more to worry about in the future. 

In an earlier post I promised that I'd provide information and try to answer questions as they arise, and I've learned that I take for granted the steep learning curve that I've undergone while friends and family have been left to fend for themselves. Any medical journey is complicated and often confusing because treatment can vary according to medical center, doctor, and patient. It's all about weighing risks, benefits, current knowledge, and predicted outcomes. That's what I've gathered anyway. When it comes to breast cancer, age and gene status is a big factor. I'm part of the "we don't really know" group -- young, no known gene mutations, and no known reason to have developed cancer. There have been several "branches" of decision making over the last two months. Each time we've met with the oncologist BHE gets his pen out and draws flowcharts on the exam table paper. He's pretty useful like that. There are a lot of "if/thens" and we're nearing the end of the branches. So far the "ifs" have gone our way. Now we wait to see what we find during surgery. 

So surgery. I'm having a bilateral mastectomy. But you're thinking, "Why? My friend/grandma/neighbor/coworker had a lumpectomy." Remember what I said about every case being unique? Breast cancer treatment is tailored, to some degree, to the individual. There are many factors to consider when it comes to treatment. In my case, the location of the tumor is key. It's central and close to the surface. A lumpectomy just wouldn't make sense. They would have to remove the whole front of my breast and then do radiation and I'd be deformed. Then there's the option to remove only my affected (right) breast. Well, I'm 36 years old. Statistics on breast cancer treatments give 5-10 year survival rates because most of the women studied are older. While it's possible to have a recurrence of breast cancer even after a mastectomy I'm going to do what I can to not feel like it's lurking in the shadows. From another practical standpoint, I would have one reconstructed breast and one natural breast so the left would age and the right wouldn't. That just feels odd to me and it's a headache I'd rather not deal with.

But that's not all, folks. There's still more "branches" to deal with even during the surgery. I'll go into the operating room early next Tuesday morning not knowing for sure what's going to happen until I wake up. I could wake up with a completed mastectomy or I could wake up with a port placed for chemo. The first thing KAS will do in the OR is a sentinel node biopsy. If there are cancer cells in the lymph nodes then the surgery will stop and she will place a port for chemo. Once I'd completed chemo we'd do the mastectomy. But again, you're thinking, "Why? That's not what my mom/kid's teacher/hairdresser did." I know, right?! Remember what I said about individualized treatment plans? This one's mine. I wouldn't want expanders (place holders/skin stretchers that go under the chest muscle and make way for the permanent implants) in during chemo because they hurt and can heighten infection risk. Also, I just think I'd do better physically and emotionally to have my own breasts during chemo instead of a flat chest with scars. Hopefully the nodes will be clear and I won't have to do chemo. 

If you're thinking that this all sounds insane and you can't even wrap your mind around it -- high five! Neither can I. I was clueless about breast cancer before I was forced to learn more. I'd done Race for the Cure before and gotten the t-shirt. I'd made donations here and there, but it's nothing I made a big effort to know more about. After all, I thought for sure I'd have a crisis with heart disease, diabetes, or some other cancer given my family history. Breast cancer wasn't even close to being on my radar. I mean, less than 7% of breast cancer patients are under 40. I'm so stinkin' special right now I can hardly stand it. No really, I can hardly stand it. I don't want to be doing this. 

At this time one week from now I'll be tossing in bed, alarm set for 5 am, wondering how in the world I'm going to make myself go through with it. I pray that thirty years from now my grown daughter will be floored by the brutality of how breast cancer was treated "back in the day." I hate that it's now part of her medical history but my hope is that not only will she never have to go through it but that mastectomies will be old school. I know thirty years is pushing it but we can dream can't we?

**Just a word about comments: Your encouragement means a lot to me and I hope to others. I'd love for you to leave comments here instead of (or in addition to) Facebook if you don't mind. You comments won't show up right away because I moderate them. Please consider it. Thanks, friends!

Wednesday, March 26, 2014

Facebook Post

My mom is coming to town tomorrow and my sister next week so CB's getting more curious about the surgery and what the big deal is. I decided to just tell the kids what's going to happen since we're pretty open around here with the medical info & jargon. I knew that whatever CB could cook up in his head would probably be way worse than what's actually going to happen. Fast forward to lunch today...
SJ: "Are they going to cut your breasts off with scissors?"
Me: (trying not to laugh) "They'll use surgical instruments."
SJ: "They're going to use instruments?!" (She's picturing a guitar.)
Me: "I mean surgical tools."
SJ: "Like a screwdriver?!"
*Mercy! I'm probably going to give my kids nightmares.

Monday, March 17, 2014

Facebook Post

Got some great news while up on the mountain today! Those test results that we were waiting on came back. My Oncotype DX score is 8, which is very low. The "low" threshold is 18. It means that the likelihood of recurrence is low. That's the second to last hurdle in deciding for/against chemo. My surgery is April 8th (new date) so we'll have to see what the lymph nodes look like. Thanks for praying, friends! You have no idea the comfort it gives us.

Thursday, March 13, 2014

Perspective

Today did not go how we thought it would. We spent three hours at the cancer clinic, most of that spent waiting, only to find out that the test results that we were waiting for weren't in. It was a disappointment and an inconvenience and threw off our whole day. Normally this all would have irritated me but not today.

Today I walked in the doors of the cancer center, feeling perfectly healthy, joking around with staff as I got my wristband. It was just an appointment to talk about things anyway -- not much to complain about. Then I turned around and saw her. The same young girl -- maybe a teenager -- that I've seen a few times before. There she was with bald head and scar down the back of her neck, her weak body slumped in a wheelchair, wearing a surgical mask, and in tears from pain and worry. She was there on my first visit after I was diagnosed. At that time she was in good spirits and excited about her new wig, but not today. Something big was going on. She had about ten people with her and some were wearing "Team Avery" shirts. Her mom and dad were hugging her, rubbing her back, and seemed to be gearing up for something. There was a photographer with them and several other group members had cameras as well. Everyone seemed a little grim and expectant. A staff member finally came and escorted the group through the glass double doors. Maybe I just made it all out to be something it wasn't, but it really looked like Team Avery was off to face something difficult.

I understand the things we tell each other. When someone is diagnosed with cancer we grasp for the right words to say and we're scared of saying the wrong thing. We rely on rhetoric that we've heard, seen, read. We embrace the "brave hero" jargon and say what we're supposed to say. But like I've said before, every road is different and mine is certainly different than Avery's. She deserves those words -- brave hero. She's fighting hard and yet she might never have what I have -- great experiences, an amazing marriage, two precious kids, and unending things to be grateful for. 

When I was diagnosed, that first week was torture. We didn't know much of anything and we weren't telling many people. There just wasn't enough to tell. My biggest fear at that point was how all of this would impact our kids, especially our sweet boy, CB. Just last summer we lost my beloved aunt to primary brain cancer. It was tragic and heartbreaking. CB took it so hard, struggling with anxiety and panic attacks for several months after her passing. We had explained to him then what cancer was and why hers was so dangerous and hard to make better. With my diagnosis, now seven months later, all I could think about was our sweet boy going through that pain again because of me. I absolutely hated to tell him but we did. We explained that all cancers are different and mine was a very treatable one. He climbed on top of me and cried. How I didn't lose it right then I'll never know. We gave him some time to calm down and think about things and then BHE asked if he had any questions. Our 8-year-old boy asked his daddy if mommy's cancer was the kind that killed people. BHE's response? "Nope." Wrong answer. So BHE revised his statement to explain that sometimes it can but lots of women get totally better. CB's had his ups and downs since him but I expect the real difficulty will come later when I have surgery/treatment.

I'm writing all of this to process, remember, and explain, maybe for other people to understand but also for me to relate better to others as they go through the same thing. My point is that I'm no hero. I'm no inspiration. I'm not battling anything in warrior mode. I have no pink ribbons. That's the state of my current road. As we get more test results my path may change. Maybe I do have a battle ahead of me. Maybe I will need to fight, but not right now. So far I'm just a healthy person walking around with a small mass of uncontrolled cell growth. I'm going to my appointments when they tell me to. I'm not freaked out by doctors, hospitals, tests, etc. I've been here before with other things. I'm actually quite fond of most doctors. :)

I looked around the waiting room this morning and it was filled with all different kinds of people. One women sitting behind me remarked that Avery was lucky to have so many people to support her. That's true, and I immediately thought of who I have. You're too many to count. If there was ever a "convenient" way or time to face cancer it's here and now with me. Amazing friends and family for support, access to the best physicians and technology just down the road, great insurance to cover everything, and flexible schedules to bend to appointments. Life could be much scarier than what we're facing. For me, if it were Andy, the kids, or another loved one I can guarantee that I would have absolutely nothing witty to say. I'd be mad, hurt, and scared. Some of you may be feeling that on my behalf and I get that. I'd be feeling that if it were you with cancer. But I'm telling you that for now I'm okay and that has nothing to do with being brave. It's just what it is. We'll see what song I'm singing as my April 2nd surgery date gets closer and closer. For that I reserve the right to get angry and ugly at any point!


Facebook Post

Going to see my surgeon and oncologist this morning and should be getting some big test results (Oncotype DX). It's the second to last big hurdle in determining chemo/no chemo. I'll be rockin' this gem, and by "rockin" I mean looking a little awkward because I'm not cool enough to wear a leather cuff. I don't care though!#screwyoucancer

Tuesday, March 11, 2014

Shock & Awe

There are a lot of questions that I know people want to ask. I know because I've wanted to ask the same questions when it was someone else just diagnosed. How did you find it? What tests did they do? How did you react? What did you tell your kids? If there's one thing I've already learned from this experience it is that no two roads are the same. There are a lot of similarities -- tests, treatment protocols, the fear of the unknown. But each experience is unique. As I continue to process this thing -- in between school drop-offs, scout meetings, stomach virus cleanup, etc. -- I'll include a lot of those details, but I'll start with the beginning.

The timing of my diagnosis was all much quicker than I think we were prepared for. It was a blessing, in a way, that we didn't have to wait, although it seems strange to say that since we didn't think it was anything to worry about in the first place.  

Sometime over the Christmas/New Year holidays I felt something different. Something uncomfortable against my clothes. After feeling around I felt a small, hard, round mass about the size of a pea. Knowing that our life was far too perfect for such a thing I assumed it was nothing, but I made a mental note to get it checked out after the holidays. Fast forward a few weeks -- I called my OB/Gyn and they got me in the next week. It felt so awkward to even say "I found a lump" like I was some sort of alarmist hypochondriac. Honestly, the whole reason I even went in was because I kept thinking of how awful I would feel to let it go only to find out later that I have cancer everywhere. That thought process alone is pretty stupid, but that's what was going through my head.

So I went in, got the "It's probably nothing but let's get you scanned" deal and went for an ultrasound the next week (2/5/14). I knew something was up when after the ultrasound the radiologist ordered a mammogram and then a spot compression scan. Still, I thought, "So there's something there. Maybe something precancerous and they'll just take it out. It's fine."

Backing up, when these scans were scheduled they also scheduled me to see the breast surgeon the next day to get the results. My OB/Gyn had even said, "It's at the cancer center. Don't freak out about that. That's just where the clinic is." So I didn't freak out. I'm too young and healthy for this to be anything. There's no family history. This kind of stuff doesn't happen to us. It's nothing.

Walking into the cancer center is surreal. They give you a wristband when you check in, which I thought was weird because I wasn't a patient. I wasn't sick. Those people with bald heads, obvious scars, frail bodies -- they're the cancer people. Not me. I'm just over here stopping by to hear "it's nothing" on my way to lunch.

At the cancer center they have pagers like at Chili's, which I made a dumb joke about because I'm socially awkward like that. When my pager went off we walked back to an exam room and on the way Best Husband Ever (BHE) saw a nurse he knew. She was surprised to see us so he diffused the situation by making a joke that we were there because of my lumpy boobs. To clarify, I don't have lumpy boobs. It's just the one lump. That's how I knew it was odd. In the exam room we did all the basic questions and stuff then I changed into an exam gown -- weird because I could certainly hear "it's nothing" without taking my shirt off. 

Our chosen hospital is the teaching hospital where BHE did med school, residency, and where he was an attending doc before recently moving to the other hospital in town. It's what we know best though, and I needed to be "home" to deal with this potential scariness. Being part of the system has its advantages, like knowing who to see and how to make it happen. It also allowed us to waive off the resident during this time of mounting anxiety. I'm a big fan of medical education -- it's certainly worked out for us -- but sometimes a patient just needs fewer people to repeat things to. This was one of those times. I won't always feel that way.

After a few minutes the Kick A** Surgeon (KAS) came in. [You're welcome for that nickname!] She and BHE knew each other from residency so there was that initial "cool to see you but it sucks that we're here for this reason" vibe. I don't know how the topic came up but KAS and I realized that we grew up in the same area around Central Texas and could have very possibly been at the same country dance halls at the same time while in high school. So, so random but oddly comforting nonetheless. 

So KAS shows us the scans from the day before and points out a Mickey Mouse-looking spot (literally looked like a Mickey Mouse head) thought to be harmless and another much less harmless looking spot. "What are you doing for the next twenty minutes?" she asked. "Ummm...getting a biopsy?" Bingo. So they pull out the needles with drugs, swabs with brown stuff, and this biopsy vacuum thing that looks like a fireplace lighter. Still, no big deal. We'd look back and remember that weird biopsy that turned out to be nothing, right? 

That was on a Thursday (2/6/14) so we knew we might have to wait until Monday for the results. At that point I was feeling a little dishonest about not having told anyone else about what was happening so I texted my baby sister, Mel. I was going to see her later and didn't want to feel like I was keeping a secret. She responded with an appropriate "WTH?!" but I assured her it was probably nothing. That's why I decided to wait until we got the results to tell anyone else. I could avoid eye contact for a few days if I needed to.

I don't remember much about the waiting part other than it felt very surreal. Who sits around waiting for biopsy results? Not me! Cancer people do that and I wasn't a cancer person. But I did sit around. I couldn't bring myself to leave the house the next day. What if I was in the middle of a restaurant when KAS called? Luckily BHE was off work so we just went through the motions of the day until I noticed that I had a missed call and voicemail. It was KAS and she left her cell number. Cuss word. Maybe it's bad news. I went into the home office where BHE was and with shaking hands and breath I returned her call. "Well, it's not good news. It's breast cancer." Did someone just suck all remaining air out of the room??? I looked at BHE and shook my head as KAS said some stuff about more tests on the tissue and my next appointment. I don't even know really -- I just handed the phone to BHE so he could talk shop about his wife with the breast cancer surgeon. 

I sat down in the brown recliner, the one that used to be in our baby girl's nursery and was later moved to the office when she outgrew rocking. I couldn't breath. Normally I'm pretty quick to emotionally detach and move into attack mode when needed, but our now three-year-old baby girl, SJ, happened to walk in at just that moment. She climbed up in my lap for snuggles, as she always does, completely unaware that our world had just stopped spinning. I couldn't detach. All I could do was try to keep my crying quiet and not let the tears touch her. I hated what this would mean for her. I hated that her big brother, CB, would understand that it's scary and cry over it too. Our family, our friends, our neighbors, everybody -- I didn't want to make them sad. Not for me. Not over this. That is the feeling I will never forget. Not doom, not pain, not discouragement, but the sadness. They wouldn't understand that I feel fine -- until I don't. That nothing was different -- until it is. That it's "just a little spot." They would just be sad and scared. That's the worst part. When I was done crying I texted my sister again -- "It's cancer. Shit." And I don't usually cuss. I'm doing it a lot more these days though.

Thursday, March 6, 2014

Facebook Post

I'm working on gathering post-surgery supplies and someone said that those little round cold packs for kids are good to have. Target only had Jake and the Neverland Pirates ones so I got them, because nothing makes a woman feel better about herself than plastering a preteen cartoon pirate to her non-boobs.