Aztec 3

Tuesday, November 11, 2014

A Different Kind of Bra Burning

Last night I went to bed with today's to-do list looming. Both kids would be in school and I should have been able to get a ton done. I suppose I did get a lot done, but not nearly enough. One of my first stops of the day was at Target. Oh, Target. What a love/hate affair. I love it because, well, who doesn't? I hate it because I always spend too much. It's very cliche. Today I hated it for a different reason though. On my shopping list were the normal things -- toiletries and such -- but there was also something that I've been dreading and putting off for a while now. Bras. I really needed to buy some bras that weren't sports bras, which is what I've been wearing since my mastectomy. I've been cleared to where whatever kind of bra I want now that my incisions are healed. Sure, it would be logical to go to a better store where someone could measure me and tell me what size I need and all that, but I'm nowhere near being able to go there. The thought of having to explain to the salesperson the mess that she was about to see...I just can't do that right now. So, Target it is. I was literally shaking and almost in tears in that stupid bra section today. I wanted to throw all of those pretty lace bras in a pile and have a big bonfire right there. My body is not shaped like that anymore. I can't imagine wearing anything that has any shape (or appeal, for that matter) to it. I settled for some lame, non-structured things that are basically just one step away from a sports bra. I guess that's a start.
The dumb bra thing really impacted my entire day. I zombied through the rest of my errands and checked things off my list, but I didn't get the important things done. I wasn't very patient with my family. I couldn't concentrate enough to get my writing finished. And now I feel like I have to vomit out all this stuff about bra shopping before I can continue my night. But do you know what? This week a friend is facing the recurrence of her cancer. I think I can face some annoying bra shopping.

Friday, October 24, 2014

We're all Surviving Something

I get it. I'm a Survivor -- one with a capital "S." I don't know when the breast cancer pink machine started using that term but I'm not all that comfortable with the label. That day back in February when I was diagnosed, I got angry. Very, very angry. How dare that little b*tch, Breast Cancer, think she can mess with me like this. It went through my head. I didn't say it out loud, lest BHE think I'd gone instantly insane, but I sure thought it. What I did say was, "Nobody better freakin' come at me with any pink ribbon, glittery crap, or try to do some charity nonsense in my name. I'm.not.having.it.!"

It's been over nine months since I much-more-than-uttered those words. I now have pink stuff, some of which I've even obtained on my own accord. I made it through my first Race for the Cure as a Survivor. I wore the pink shirt, posed for the group photo, let go of the pink balloon (even though there was no "less-than-a-year" release category), and even managed to feel some sense of belonging and pride during the whole thing. It's the other women, those who understand what this is because they've been there, who have made me more tolerant of my new group membership.

This week I had my six-month follow up with my breast surgeon (Kick A** Surgeon -- shout out!) and my six-week follow up with my plastic surgeon (Shout out! Kidding -- I know he doesn't read this.). I won't have an appointment with KAS for another year, with my plastic surgeon for another four months, and I don't see my oncologist again until December. If you've seen my running timeline you know that this spacing is huge, especially considering the dead sprint we were in back in the spring. It means that we told breast cancer to get the h*ll out, slammed the door in her face, and watched her run, screaming, into the night (any of my college friends get that reference?). That sounds pretty violent -- I promise I'm not a violent person, except when cancer comes around.

My physical struggle with this beast is coming to an end. The medicine, Tamoxifen, that I'm taking for the next 5-10 years is not my favorite thing in the world (ice cream involving chocolate and peanut butter is), but I appreciate its proven effectiveness in keeping this cancer away. It's causing physical struggles but nothing that I can't handle. As for the emotional struggle of breast cancer, well, that's another story. I honestly don't know where I am with that. It'll take time.

This week I did something that was somewhat healing. I spoke publicly about my breast cancer experience for the first time. Our awesome, sweet, smart, talented, beautiful goddaughter type person (shout out!) invited me to speak at her all-girls school. She organized a pink-out day and each girl paid two dollars to break uniform and wear pink. They raised several hundred dollars to donate. So impressive! I spoke to a cafeteria full of 7th and 8th graders, reading from a few blog posts and ending with a word about survivors.

It was the first time that I put into words what I'd been thinking since that day back in February when our world stopped spinning. We are all surviving something. My something just happens to have millions of dollars and serious PR behind it. It's now pink and popular and heroic. Other struggles don't get that kind of support.

I looked around that cafeteria on Wednesday -- hundreds of girls, a few that I knew, and thought about the magnitude of their present or future "somethings." Violence, abuse, divorce, poverty, illness, eating disorders, secrets, shame, guilt, learning struggles, bullies, addiction, and on and on. They are surviving big things, too. The fact is, I was a survivor long before breast cancer ever came knocking. And if I'm being honest, breast cancer probably isn't even the hardest thing I've survived thus far. Anxiety, depression, poverty, parental alcoholism, miscarriage, death of a parent -- those things were hard and couldn't be cut out or treated with medication. Obviously, I'm not arguing that breast cancer isn't insanely difficult. It is, and it's much more difficult for those who have undergone chemo, radiation, complications, and recurrences. It probably is their ultimate tale of survival.

I think of many of my friends who are surviving things I can't even begin to imagine -- sick kids, crushing relationships, chronic health problems, family violence, financial ruin, sexual assault, body image demons, and much more. Friends, you are survivors! I see your bravery, your perseverance, your fortitude. I admire your strength and courage. I wish there were ribbons, races, and colors in your honor because you are surviving and I see you! Your fight against your something has helped carry me through mine. I would love to think that 2014 will go down in our books as the hardest of our lives but I know that it likely won't. We're young and we have a lot more life to lead. I do know that what I am learning during this struggle is making me stronger, able to walk with greater confidence through difficulty, and more eager to hold the hands of others during their dark times. This is the purpose of my survival. If we don't use our difficult experiences to bring light into the darkness of the struggling, then what's the point of surviving in the first place?


Friday, September 12, 2014

The Timeline

How this all goes down:

Jan. 29, 2014 -- Saw OB/Gyn about a small mass I found over the holidays
Feb. 5 -- Ultrasound & mammogram
Feb. 6 -- Biopsy with breast surgeon
Feb. 7 -- It's cancer. Sh*t.
Feb. 13 -- Test results: ER/PR +, Grade 1 tumor (good news)
Feb. 19 -- First meeting with Onocolgist
Feb. 25 -- Test results: BRCA1 & 2 negative, Her2 negative (good news)
Feb. 27 -- First meeting with Plastic Surgeon
Feb. 28 -- 36th Birthday
Mar. 3 -- Bilateral mastectomy scheduled for Apr. 2
Mar. 13 -- Pre-op with breast surgeon
Mar. 14 -- Surgery rescheduled for Apr. 8
Mar. 17 -- Test results: Oncotype DX score - 8 (great news!)
Mar. 24 -- Appt. w/Oncologist
Mar. 25 -- Anesthesia pre-op
Mar. 27 -- Plastic surgery pre-op
Apr. 8 -- Bilateral mastectomy with expanders for reconstruction
Apr. 10 -- Released from hospital
Apr. 15 -- Follow-up with breast surgeon; final pathology report: scattered DCIS in right breast, lymph nodes clean!
Apr. 17 -- Follow-up with plastic surgeon; drains removed
Apr. 20 -- Easter
Apr. 21 -- Follow-up with oncologist; Rx for Tamoxifen (and Coumadin)
Apr. 21 -- Plastic surgeon; first expansion (250 cc to 325 cc)
Apr. 24 -- INR (clotting level) check; Coumadin at 5 mg
Apr. 28 -- INR check; Coumadin to 1 mg, begin Tamoxifen
Apr. 29 -- Plastic surgeon; second expansion (325 cc to 400 cc)
May 2 -- INR check; Coumadin to 2 mg
May 5 -- INR check; Coumadin to 3 mg
May 9 -- INR check
May 11 -- Mother's Day
May 13 -- Plastic surgeon; third expansion (400 cc to 450 cc)
May 14 -- INR check; hold med 15th, Coumadin to 2 mg on 16th
May 15 -- SJ turns 4 yrs!
May 18 -- 12th Anniversary!
May 19 -- Appt. w/oncologist; INR check
May 22 -- Plastic surgeon; fourth expansion (450 cc to 500 cc)
May 23 -- INR check
May 29 -- INR check; stable at 2 mg Coumadin
June 3 -- Plastic surgeon; fifth expansion (500 cc to 550 cc), last fill!
June 10 -- INR check
June 11 -- OB/Gyn, discuss Mirena IUD removal (because it emits estrogen)
June 16 -- Plastic surgeon, no more fills, set exchange surgery date
June 24 -- INR check
June 24 -- Plastic surgeon, pain in left pec. muscle
June 28 -- Aqua Zumba with other BC people, first time to call myself a "Survivor"
June 29 - July 5 -- **First week since Jan. 29 with no appointments!**
July 7 -- INR check
July 28 -- INR check
Aug. 5 -- Plastic surgeon, pre-op appt
Aug. 13 -- Stop Tamoxifen & Coumadin in prep for surgery
Aug. 18 -- Follow-up with Oncologist
Aug. 25 -- CB starts 3rd grade!
Aug. 27 -- Exchange surgery
Sept. 2 -- Follow-up with plastic surgeon
Sept. 3 -- Restart Tamoxifen & Coumadin
Sept. 9 -- INR check
Sept. 23 -- Follow-up with plastic surgeon
Oct. 4 -- First Susan G. Komen Race for the Cure as a Survivor
Oct. 21 -- First time to speak publicly about my experience
Oct. 22 -- Follow-up w/breast surgeon
Oct. 23 -- Follow-up with plastic surgeon
Nov. 19 -- INR check
Dec. 17 -- INR check
Jan. 12, 2015 -- Follow-up w/Oncologist

Tuesday, August 26, 2014

*Not* the Final Countdown

It's been six months and nineteen days since my breast cancer diagnosis, four months and eighteen days since my bilateral mastectomy, and twelve hours until my breast reconstruction surgery. CB started school yesterday so our summer is officially over. We packed in a lot of fun over the past few months -- trips & visits, waterparks and pools, camps, parties, and everything in between. I kept us busy on purpose. It meant less down time to sit and dwell on cancer, or medication side effects, or the weirdness that is my body right now.

I'm not sure what to make of the last six months. Suddenly I'm a member of this club full of great people, but the club that no one hopes to be in. It's an odd world of pink ribbons, sparkles, scars, and discussions of things that used to be intimate but are all too common and public because of our shared experiences. I've met amazing women and the people who love them. It's helped. I've gone to a few "survivor" events this summer even though I feel so weird identifying as that. I know I'm lucky to have caught my cancer early. I knew what to do and who to go see. I have insurance and a health savings account that's handled this well. Many, many women don't have such advantages. I've seen many who have waited, and those whose tests didn't go the way mine did. They've been through so much more than I have. 

My cancer was cut out of me four months ago. My lymph nodes were clean. People have been asking, "So, it's all gone?" or "You're cancer-free?". I just respond with, "As far as we know." That's the truth. As far as we know. That's not me being pessimistic, it's me being realistic. This deal isn't over. I'm taking a cancer medication for the next ten years to hopefully keep the cancer from coming back. I've talked about this more in previous posts so I won't go into detail now, but this drug has possible side effects raging from annoying to life threatening. It's not a cake walk.

**Detailed stuff here -- read at your own risk**

Phase 2 of my reconstruction process is tomorrow. Some would look at this as being closure to my cancer experience, a sort of last hurdle, a way to get my body back to normal. That's far from reality. My body will never be "normal." I'm not sure people understand what happens during a mastectomy. I didn't when this started. While there are different degrees and procedures according to location and severity of the cancer, every patient is left with prominent scars. Implants don't fix that. Currently, I look like I have two softballs attached to my chest. They look like circles with horizontal lines across the middle. Tomorrow, when the tissue expanders are removed and replaced with implants, things will be a little lower and softer. They'll still be circles with lines. No nipples. No feeling. Just numb mounds of skin to make things look more normal with clothes on. That's the literal technical goal of breast reconstruction -- to appear normal with clothes on. Some women get nipples reconstructed using skin tissue then have the surrounding skin tattooed to look like an areola. I suppose it's an attempt to trick the eye when they glance at the mirror. I've decided against that. I don't think having fake nipples that have zero feeling will make me feel better about any of this. What I'm getting at here is that breast reconstruction is not a boob job. It's not augmentation. There are no breasts left to augment. I don't know what bra size I will be because it doesn't compare that way. The implants will likely be much smaller than my real breasts. It's hard to recreate with implants what took me several years and fifty extra pounds to create on my own. So, no, I'm not excited about having implants. I liked my real breasts. They were pretty great. I'll be glad to have these tissue expanders out and to no longer look like I'm deformed from a bad boob job. I'll be glad to not be waiting for another surgery. That's about it. I'm not excited tonight. I'm just ready to get this phase over with, but I know it's just this phase. I've been off my medication for two weeks (in prep for the surgery) and I'll go back on it two weeks from now. I've had withdrawal symptoms that make me feel like junk and I'll get to experience all of it even more when I start the meds again. 

It's all annoying, frustrating, and depressing...if I let myself go there. In reality I know that there are much bigger and scarier things going on in the world and in the lives of those around me. Not that I'm minimizing this whole experience or that of others who've experienced the same, but when I look at the big picture I know that my life is still incredibly fortunate, cancer or not.

Monday, May 12, 2014

Milestones & Mother's Day

This week marked three months since my cancer diagnosis and one month since my mastectomy. I've had somewhere around one thousand different thoughts and feelings fly through my head and heart since then -- sadness, loss, thanks, joy, relief, anger, guilt, gratefulness, loneliness, fear, hope, and more. A lot of great things -- birthdays, vacations, holidays, etc. -- have happened since then and when I look back over the last three months I see a lot of joy and blessings. There's also been plenty of pain, both physical and emotional. Going from just a normal healthy person to having this cancer label has been a trip I didn't anticipate. Aside from the pain of surgery and recovery I have never once felt sick because of cancer. Mine hadn't spread. It hadn't interfered with any other body parts to cause problems or symptoms. It had to go though, so I had both breasts removed and I'm still recovering and having pain from that. Breast reconstruction hurts. The expanders are hard and painful. The chest muscles have been cut, sutured, and are struggling to work right again. Nerves are trying to wake up and regrow. I'm spacing out my expansions to two weeks apart so that I can have a "good" week after I've had a fill and that's helped. 

Technically the cancer should all be out of my body, as far as we know. I've begun taking Tamoxifen, an effective and proven drug that dramatically reduces the chance of recurrence. So far I've had no side effects. Because I have a history of blood clots I'm also taking a blood thinner in an attempt to avoid clotting while on Tamoxifen. I've been going to the cancer center for blood work twice a week while we get my clotting level stabilized. In a few months, whenever we decide to do it, I'll have my expanders replaced with silicone implants. If all goes as we hope, a few follow-up appointments here and there for med monitoring (for the next ten years) and screening exams will be all that's left of my breast cancer experience. Well, that and the scars and the flesh that's supposed to resemble new breasts. :/ I feel guilty that I avoided chemo. I never had to get sick and worry about bigger things like infections from a compromised immune system. I didn't lose my hair or have a port. It's an odd mixture of relief and guilt.

My biggest fear when I was first diagnosed was that I would leave my kids without a mom, so I'm beyond grateful that I'm not leaving them anytime soon. I don't know that there's any greater gift I could have gotten this Mother's Day. My mom's been here for almost six weeks. I have not touched a single load of laundry or dishes in the last month. She's cleaned, watched and entertained kids, welcomed visitors, and just "been here" all without once complaining. I know it's not easy seeing her daughter go through this but she has been a rock. It would've been much more difficult without her. My other rock? BHE. Well, he's my rock all the time, regardless of cancer, but he's been unwavering though I never would have expected any different. Getting to celebrate them and motherhood to our sweet kids was extra special yesterday. 

This will be my last post before I take a little break from this blog. Life is busy right now with the end of school and beginning of summer, and while I still have this recovery/reconstruction/med business to bother with I have so much more fun, excitement, and joy to experience. I feel like the rest of life has played second fiddle to cancer for the last three months but now while I have a little break in this deal I need to participate in "normal" while I have the chance. Out of necessity, I've focused on myself for most of the last three months, missing milestones and big things in the lives of friends and family. I've been selfish, warranted or not, while others took care of us. I need to get back to caring for others now. I'll only have a few months of that before I have my second surgery so I'll squeeze it in while I can. We can't thank everyone enough for all of the prayers, calls, texts, messages, visits, food, favors, etc. that have gotten us through this time. Although it's not quite over and there may be unknowns to come, we are so comforted by our network of friends and family who have shown us incredible love and care through this. I don't know how we would've done it without you. Thank you!

Sunday, May 4, 2014

Out of my Hands

Last night I couldn't fall asleep. I had done some yard work and my muscles were mad, my mind was wandering, and I couldn't find my Kindle (CB had "relocated" it). I wanted to stay in bed, so I just messed around on my phone, making the rounds on Facebook, Instagram, Twitter, etc. But around 1 am, my mind wandered a little too far and I started browsing You Tube for surgery footage -- mastectomies, reconstruction, etc. I found some good stuff, opting for the edited 5-10 min versions with the audio turned down as not to wake BHE sound asleep next to me. This stuff doesn't bother me. It's fascinating and it helps me make sense of things.

I used to be a control freak. There's a history behind it (as always) and maybe I'll write about that another time. Sometimes I look back at how I treated people in the past and cringe over the priority I placed on completely unimportant details. Having towels in the right place, the right brand of drinks at a party, the right look on my kids, and on and on. I credit BHE with saving me from that. He's the opposite and has modeled a better way of living to me over the past twelve years of our marriage. Certain events & situations will prompt that side of me to come roaring back though. 

I would have expected this whole cancer thing to send my need for control into overdrive, but so much is inherently out of my hands that I've been forced to just let most of it go. I've definitely had my moments -- and KAS, who gave me her cell number, can probably attest to that. Over the past few weeks though I've had this nagging feeling that I can't shake -- total loss of control, the unknown of both the crucial and the mundane. It's the surgery. The time under anesthesia. The loss of body parts. I cannot even begin to reconcile it. I realized last night that it's why I keep reading that damn surgery report. My brain is trying to piece together a cohesive picture of that day but it can't. I want a video. An account of what was done and said. Who did what, who said what. I want to see my intubation, the node biopsy, the mastectomy prep, the first cut, the final cut, my tissue placed aside and sent to pathology. I want to see and hear my time in recovery. BHE was there with me and I asked him what things were like during that time but he didn't say much. I'm sure it wasn't easy for him and that's not how he operates anyway. I just don't remember anything and it's unsettling. I want to remember the trip from recovery to the hospital floor. I want to remember my friends who came by, my sisters and my mom. I don't know why it's all bothering me so much.  

The reality is that there is no account of that time other than the surgery report I already have. There's not a video. There's no one in that place that would recount anything other than what they've done and said for any other patient. Why? Because I was just their first surgery on that one Tuesday a few weeks ago. They'd been there and done that and that's why they're good at what they do. I'm not saying that the docs, nurses, techs, etc. are uncaring. I've already written about what I do remember about that day and they were caring, just as I'd expect they are with every patient. At some point my brain will wrap around the truth that the surgery saved my life. The pathology report attests to it. There was more cancer than we knew about -- DCIS (ductal carcinoma in situ) -- cancer that hadn't yet spread outside of the ducts. It eventually would have. It would have reached the lymph nodes. It would have spread to other parts of my body. This surgery had to happen and I'm grateful that I found the mass when I did. It saved me from what could have killed me later. Rationally that all makes sense. I really shouldn't need to know anything more than that.

I suppose that these feelings are all normal. Processing emotional trauma is a difficult thing. Friends keep asking how I'm doing and they mean it. They really want to know and I so appreciate that. I just don't know how to answer. Logically, I know I'm fine. As far as we know, my body is healthy and in several months I'll feel more like myself again. My regular trips to the cancer center will taper off and I'll feel less like a patient. Those are all great things. I guess my answer to "How are you?" is that I'm doing fairly well...considering the muscle tightness and pain, considering the image in the mirror, considering my lingering fatigue and restless emotions.

I've been constantly posting and tagging and checking in on Facebook. It looks like we're living it up over here. I've seen three new movies in the last week. We've been eating out at our favorite places and taking advantage of the sunshine and fun spring activities. Cancer recovery looks great on my Facebook timeline. We're doing those things because it's easy for me to walk into a movie theater, sit in the dark, and zone out for a few hours. When we're eating at our favorite places I forget for awhile. When I post pictures of our fun on Facebook it gives me something to go back and look at and think about when the darkness creeps in at 2 am and I can't sleep. I read the comments of friends and family and it encourages me. It reminds me of how lucky I am that my cancer was caught early, that surgery options were good, that the medicines are effective, that all I have are a few temporary aches and pains, and to stay positive that the cancer won't return. So I guess that's how I am. I'm still emotional, sometimes moody, and ready for the time when the pain will be gone and I won't think about this all the time.

Thursday, May 1, 2014

How This Could Have Gone

In the fall of 2009 I noticed some weirdness with Pancho. There was some leakage (technically "discharge" but that word creeps me out) so I mentioned it to my doc and she sent me for a mammogram just to be safe. During this time we were living in Charlottesville, VA -- 1,500 miles from "home" in Texas -- while BHE did his final round of med education. I was thirty one years old and felt like I had been given a free pass to observe the mysterious world of adult womanhood. I'm a sociologist by training and any chance to observe new and different things is exciting to me. In fact, I seriously considered focusing on the sociology of medicine for my master's degree. I ended up specializing in urban sociology and statistics instead but I never lost interest in medicine. So, walking into the Breast Care Center at the University of Virginia Hospital was like a field study in gendered medical treatment. I'd never been to such a place -- I felt nervous, excited, and guilty all at the same time. 

Here were women in various stages of breast cancer testing, diagnosis, treatment, and there I was just hanging out gawking because I casually mentioned some leakage to my PCP. The atmosphere was obviously designed to be calming and spa-like, as if any of us were tricked into feeling like we were actually at a spa. Although, given what I know now, I've come to appreciate the effort at that center. We each got a private little room so we could change into our pink half-robes. Then we had to sit in another waiting area just staring at each other, wondering what each of us were "in for." I was the youngest one there by far and I could feel each of the older women looking at me like I had just run over her puppy. I knew they were looking at me and thinking, "Poor girl. She's way too young to have breast cancer. What a shame." And I was thinking in response, "These poor women think I have breast cancer. I should tell them that I just have a little leakage. I'm basically here for the intellectual stimulation -- a field study." As different women were called back for imaging they looked at me and said things like "God bless" and "stay strong." I thought that was really kind but not needed. When it was my turn to go back I first met with the docs and told them why I was there. They asked questions like what color, is it clear, when did I notice it, etc. Then they took a look and made their own observations. They said there were traces of blood in the fluid. I know now that I should have had all kinds of bells and sirens going off in my head -- blood in the leakage is a big flashing warning sign. But, you know, I was just there for the experience. Next I had a mammogram. It was uncomfortable but not a big deal. It was my first one and I expected it to be horrible. I was pleasantly surprised that it wasn't. I went back to the exam room and the docs were there again. They said that the leakage could be caused by a benign mass called an intraductal papilloma in the milk duct. Or it could be worse. It could be cancer. Uh oh...they used the "C" word. It's cool. They didn't know that I was just there to observe. I knew it was nothing to worry about. They said my mammogram looked clear but they wanted to do a test called a ductogram where they would inject dye into the milk duct to see if there was anything there. I said that was fine (more observation!) and scheduled the procedure. They asked if there was any way that I could be pregnant and I said that I wasn't but that we'd been trying. They couldn't do the test if I was pregnant so on the way home that day I grabbed at test from Walgreens. The whole pregnancy deal was a sensitive subject for BHE and me since our first two pregnancies were miscarriages. We'd finally had our sweet boy CB and were trying for #2 at this point. It had been six months already -- six negative tests -- so I just expected the same for this new one. I was actually a little annoyed that I even had to go through the whole negative pregnancy test thing again before they would do the ductogram. I went home and absentmindedly did the test, playing with CB while waiting the three minutes for the result. BHE was in the next room on the phone talking work stuff with a friend when I checked the test. It was positive! I was stunned. I walked over to BHE, showed him the test, then sat on the stairs and waited for his shock to join mine. We still waited for an ultrasound confirmation before we actually believed it, but once we saw that strong little heartbeat we accepted the fact that I was actually pregnant. I called the breast center and told them the news and they cancelled the ductogram with instructions to return after I had the baby and was done nursing *if* the leakage was still there. That next spring we were blessed with our sweet baby girl, SJ, and all the drama with the breast stuff was just a distant memory. The leakage never did return so I just filed that away in my mental, "Huh, that was weird..." folder. 

Looking back now, that leakage could very well have been the beginning of this cancer, not that we'll ever know. Had SJ not been already forming, had I not cancelled the ductogram, had we not just chalked that whole breast ordeal up to nothing, our life today might be much different. Had they found what they suspected, I might have ended up with this same surgery, the same meds, and the inability to pursue a second child until much later (if ever). It would have been devastating in so many ways. We were across the country from our family, BHE was working all the time, and we were scraping by on a med fellow's salary. I can't imagine dealing with this back then. 

Another thing for the "weird" folder...last Fall BHE was asked to go on a trip to El Salvador to help provide fresh water wells. He would travel the first week in June, one month from now. Usually I would wholeheartedly endorse such a trip. It's exactly the kind of thing that I would get passionate about. This time though I had huge, unexplained reservations. BHE and I have both always had a sincere passion for helping people in impoverished areas and we've done smaller trips and projects like this together before. This time though, as soon as BHE told me about the opportunity, I shot it down. BHE was taken aback. I was even surprised by my response. I couldn't articulate why I felt he shouldn't go but I just knew that he shouldn't. My feelings were in complete opposition to our values and priorities but I still refused to back down. BHE was the first one to say something the week after my surgery. "Do you remember how adamant you were that I not go to El Salvador and we didn't know why?" We looked at each other with watery eyes. Was that God protecting us? Preparing us for what was coming? Was it Him saying, "This isn't your trip. Not now. You'll need to be home"? My answer: I have no idea. It really feels like that though. 

My point in all of this is that even in the face of cancer, God is near. He's using this to change me. I've gained understanding of things that I didn't have before. I've gained new connections, new relationships, new appreciations. I've learned that it's okay to be vulnerable and to let people help. I've learned how to better help others when they face similar things. And I've learned that there are others going through much, much worse than this. If this is the toughest thing we ever face it will be a pretty easy life.

Saturday, April 26, 2014

Two Weeks Out

It's now been two weeks (and three days) since my surgery. On Tuesday I had my first expansion -- what a load of weirdness that is. My chest muscles hated that. They also hate when I take a shower. And when I do pretty much anything else. By the end of the day I'm ready to pop some ibuprofen and ice the mangled area that will one day look something like breasts.

I was fortunate to have my drains removed nine days post-op. That was fantastic! The drain sites on my left side felt like someone was constantly stabbing me. Since having them removed I've been able to stop taking my pain meds and muscle relaxers and have been cleared to drive again. Freedom! Although, I still don't have a ton of energy and I'm still pretty sore so my outings aren't very exciting -- maybe lunch, a quick errand, and a doctor's appointment.

This whole thing is still so foreign to me. I try and try to wrap my brain around it but I fail. I've been pouring over the final pathology and surgery reports, reading and rereading them, as if some light bulb of acceptance will eventually go off and I'll find peace with all of it. So that pink file folder with my name on it sits on my nightstand, waiting for my next study session, the next time I'm grasping for understanding. I read the parts about the type of anesthesia used, the sentinel node biopsy, the dissection of my chest, the muscles, the wound beds, the transfer of my breasts to pathology, the dissection of them, the preparation for testing...and it goes on and on. And now I sound insane. I promise I'm not, at least not totally. We're a medically & scientifically oriented household. Methods, procedures, numbers, percentages -- they make sense to me. I'm just having a hard time reconciling that side of my brain with the emotions that come with being the patient. This pink file folder -- it has my name on it, just like the one that holds my initial pathology report, the one that started this ordeal, the one with the paper that says "invasive ductal carcinoma." Just a small lump of cells...

Logically, I know I'm fortunate to not need chemo. But there's still one last and very long hurdle. For the next 10 years I'll take a drug called Tamoxifen. My type of cancer is estrogen and progesterone receptor positive, which means that the tumor feeds off of those hormones. Tamoxifen works to block the hormones and keep the cancer cells from dividing & multiplying. Sounds great and it is. It's a very effective cancer drug with proven results. The possible side effects can be nasty though -- hot flashes (common), blood clots (uncommon), endometrial & uterine cancers (uncommon), among others. Because I have a history of clotting (massive DVT in 2002), my oncologist has decided to have me take Coumadin (common blood thinner) while on Tamoxifen. I'll likely be a frequent flyer for labs at the cancer center while we try to stabilize my clotting level (INR), especially since Tamoxifen is known to increase the effect of Coumadin. 

You may be wondering why I'm taking a drug to prevent the recurrence of breast cancer if I no longer have breasts. Good question. It's impossible to remove every bit of breast tissue. As long as even one cell exists that cell could multiply and mutate. Cancer could return in the remaining chest tissue and/or lymph nodes or can return as tumors in different areas of the body. The numbers are in my favor given my tumor/cancer profile and lack of cancer in the lymph nodes BUT taking Tamoxifen lowers my risk even further. Being a young women with breast cancer carries a lot of unknowns since most of the research is on older women and focuses on a 5-10 year survival rate. A 10-year survival is pretty good for a 65-year-old. Not great for a 36-year-old. So, Tamoxifen it is.

People keep asking how I'm doing. Physically, I'm healing really well, one benefit of being younger. I'm getting my energy back, my pain isn't too bad, and I'm returning to some normal activities. My arms are still a little weak since my muscles are weird with the reconstruction in progress. Emotionally, I'm not even sure what I am. Some days I stay busy and don't have time to think about anything. Other days I'm on the verge of tears for hours at a time over nothing specific. Some days I feel guilty for even worrying about this little stage 1 diagnosis, but other days I'm so sickened by this interruption and how it's changed my body. I know I'll feel "normal" again but I know it won't be soon.

Friday, April 18, 2014

Just a Tuesday

I really don't know where to start. It's been eight days since my bilateral mastectomy and I've been composing posts in my head, unable to make my arms or brain work well enough to type anything. It still blows my mind that this all started with a group of errant cells no bigger than the size of a pea. 

The night before my surgery we went swimming and just had fun. CB stayed home from Cub Scouts so we could have a family night. We wanted to keep everyone close, not knowing when I'd feel well enough to do that again. We put the kids to bed that night and ran through the same script we'd been running through the past few days: "Mommy's having surgery and will be in the hospital for a day or two but if she feels good enough you can visit." SJ had already taken to being quite literal about the ordeal, telling friends and family that "They're going to cut Mommy's breasts off" and using pretty direct hand motions to demonstrate. CB was more emotional, sad that I had to leave the next morning before he got up for school. I promised that I would sneak in and give him a kiss and leave a note before I left. He was okay with that consolation. 

After the kids were in bed, BHE and I made an ice cream run in his Jeep. He'd already been off work for a few days and had taken to easing the stress with binge-watching "The West Wing", trimming trees, and rigging a system to remove the Jeep's hardtop. So we took a drive in the open Jeep and had some time alone. It was an odd feeling -- trying to prepare for either a mastectomy or a node biopsy & scratched mastectomy followed by months of chemo (see previous post for explanation). I'm usually not comfortable with that level of uncertainty but we'd been functioning at that level for two months so I'd gotten used to it.  

That night I organized my hospital bag and stash of things I'd need within arms reach post-surgery. I had plenty of button-up pajamas & shirts, wound care gear, reading material, etc. I didn't think I'd get much sleep that night but I had been so busy getting things ready in the days before that I just crashed. My alarm went off at 4:45 and I got in the shower. I had already done my break-down-crying-in-the-shower bit the previous morning so I had that out of the way. I got dressed and gathered my things, remembering to kiss the kids and leave them notes like I had promised. Then BHE, my twin sister, and I drove to Outpatient Surgery at the hospital. My report time was 5:30 and there were plenty of others already there waiting to be called back to pre-op. It's an odd feeling in the waiting room. Who knows why each of us were there? Knee replacement? Heart cath? Nose job? It's just a cattle call. There was a cute, bubbly, young nurse taking a few people back. I was hoping she would call me back, my rationale being that I'd be less likely to lose it and ugly cry if I had a nice nurse. I wasn't that lucky though. The nurse who called me back wasn't amused to be up at 5:30. She was brisk and unaffected by this thing I was about to do. She did this every morning. To her it was just a Tuesday. To me it was everything but it seems that she either forgot or just didn't really care.

We ran through the usual mandatory questions before she gave me a gown and socks and instructed me how to wash with these cloths covered in antibacterial soap that I was supposed to cover my body with and let air dry. I asked if I could wear my own socks (cute ones with grips I found online) and she very abruptly said, "No. If you wear socks they have to be our socks." I understand the need to control things in a hospital setting, and I understand (having just been in the waiting room) that not everyone shows up showered and wearing clean socks. But it's not as if these over sized raggedy brown socks that the hospital provides are sterile. I think I started cussing while in the bathroom wiping that soap all over and then dressing in the brown and green hospital gown and brown socks. It reminded me of my dad. In fact, I was doing all of this on his exact birthday. He's been gone for four years and I saw him wear this exact thing during his hospital stays. I'm almost glad he's not here to see his daughter go through this.

This would be a great thing for the local breast cancer groups to get in on -- providing mastectomy patients with pretty gowns and cute socks to wear into surgery. After all, we're already being stripped of so much of our womanhood. You'd be surprised at how much better just wearing a feminine gown and socks would have made me feel pre- and post-surgery. It sounds ridiculous but I'm serious.

Stepping off my soap box...
After I was changed, two older nurses came in to ask more questions and put in my IV. They were complete angels! I wish I remembered their names so I could thank them. Even though I knew it was just a Tuesday to them, as it was for the first nurse, they were gentle and calming and understanding that this was a huge deal for me. They apologized for rushing me through the pre-op process because they usually like to sit and visit a little longer. Although I didn't mind the lack of waiting I loved that they said that. A surgery resident came by to run through the final consent and made sure we were all on the same page. She had a New York accent so she was immediately in my good graces because she seemed like a kick a** surgeon in training. 
Soon after my IV was in they wheeled my bed down a few long hallways to the pre-op staging area -- the big room with bays separated by curtains where anesthesia comes to say hi and run through all the questions again.
At some point I started crying. I'm sure the people in the other little bays wondered what my deal was. I would have. It wasn't long before my twin started crying too. She kept me stocked with tissues and held her head close to mine. We weren't supposed to be there dealing with that, not until we were old and gray together. Certainly not at thirty six. It was all surreal. BHE stood on the other side of her while the nurse anesthetist ran through more questions. Kick A** Surgeon (KAS) came by and was wearing a black hoodie with pink writing. I don't know why I even remember that. It occurs to me now that she probably sneaked in and kissed her own kids before they woke just as I had done with mine. And there we were, meeting up at 7:30 so she could get to cutting. What a crazy job. I asked her if it was too late to cancel the surgery. I was joking but it didn't really help to lighten the mood. There just wasn't much to laugh at. 
The anesthesiologist came by soon after and she was so gentle and caring. She "got" it. The nurse said to me, "You're upset already?" and the anesthesiologist responded, "You would be too if you were about to have this surgery." Yes! Someone gets it! I was so thankful for that. It was time to go to the OR so I hugged and kissed BHE and Twin and I was on my way. I think I had stopped crying but everything is kind of a blur from that point. I remember being wheeled into the OR where there was a flurry of people setting up. It didn't look like it does on "Grey's Anatomy." It seemed much smaller and crowded, but what do I know? I was on some powerful meds by that point. The last thing I remember was KAS holding my hand and I said, "I like your hat." It was a floral (or paisley?) print scrub hat. And then I woke up mid-afternoon in my hospital room in the Family Care Unit (postpartum floor). I don't remember being in recovery for several hours, nor the trip to my room, nor much else until the next morning. I remember Twin and my younger sister being there and I remember being in pain. They said that a few friends and my mom came by but I was out of it. I do remember thinking that the kids shouldn't come see me like this and I guess everyone else was thinking the same thing because they didn't bring the them by. At some point I realized that all of this meant that my lymph nodes were clear of cancer. Logically I knew I should be happy about that but it was overshadowed by the pain representing the fact that my breasts were gone.

Tuesday, April 8, 2014

Facebook Post

I'm already composing an essay for the hospital survey on how they made me wear this nasty, ugly brown gown and socks to my surgery. I'm willing to head up a program to make this easier on women. We should all have a cute gown to wear for this. And I'm mad that they won't let me wear my cute grippy socks to the OR. It's not like these ugly brown ones are sterile or anything. Inconsiderate.

Sunday, April 6, 2014

Pink Sand and Taxidermy

Less than 36 hours. That's how much time I have left with my body as a whole. When I was a child I used to play with this hourglass phone timer that my Grammy kept by her phone. It was in a black four-inch resin rectangle and the sand inside was pink. I thought it was the coolest thing and I always liked how I could manipulate the flow of sand by titling it different ways. I wish I could tilt this -- slow the sand, make it stop.

I distinctly remember several years ago, having heard something on the news about breast cancer, thinking "I'd just cut them off and be done with it. They're just boobs. I've never been that into mine anyway. Who cares?" What an idiot. What a big, colossal idiot. The things we think and say. I'll never understand them. Things like, "Well now you'll get to pick your size." Or, "But now they'll be nice and perky!" I get it. I've made jokes. Lots and lots of jokes. It's how I cope. I've always been that way. Here's the deal though -- cancer, like anything else, belongs to the person who has it. The cancer person can make all the jokes he or she wants to make. But very few others are allowed to go there. Maybe a close friend and/or relative. Maybe. And I don't even know what to think or say if those comments weren't meant as jokes. Actually, I probably do. Let me take a stab at it...

Taxidermy. That's what reconstruction after a mastectomy is. That's probably one of the most useful things Kick A** Surgeon (KAS) said to me in those first few appointments. It was the perfect word to describe what's about to transpire. This isn't a free boob job. It's not something to celebrate, rejoice in, or even remotely feel excited about. Not for me. That's not even close to how I feel about it. For me it will be an attempt to gain back some sense of normalcy. To hide brutal physical and heal deep emotional scars. This isn't augmentation. At thirty-six years old I'm losing the parts that fed my babies, the parts that help identify me as a woman, the parts that are pretty damn entertaining during sex. So you'll have to excuse me if I'm not excited about giving that up for the rest of my life in exchange for a set of numb-but-perky substitutes. They will feel like nothing. They'll serve to fill out my shirts and that's about it. I'd rather keep my own, thanks.

This sounds angry. It is. I'm angry, overwhelmed, and full of dread. I'm not nervous, worried, or "ready to get it over with." I know what's ahead and I don't want it. Yes, I believe I'll be fine, but that doesn't make me accepting of the experience. "God will use this." Okay. That's fine. Even better if He does. At least it won't be all for nothing. Still, I don't have to like it. "It could be worse." Absolutely, without a doubt. I would choose this over a long list of much worse things. It's still what it is and I don't have to like it. "Find peace with it." Okay. Check back with me in ten years when I'm off the hormone blockers. Maybe I'll have some peace then.

Maybe I should apologize for the tone of this post, but I'm not going to. I promised that I would be real, not just for readers, but so I will remember how the countdown feels. How the last few days and hours before surgery start to tighten their grip. I'll remember when it's unfortunately another woman's turn and I hope I can be there like so many of you have been there for me. Care packages, cards, calls, messages, babysitting, prayers...they've kept me sane. You've been praying for peace and comfort and I feel it, even on a night like tonight when all I can picture is that pink sand funneling down and running out. Thank you for being here, for being willing to walk with me in an uncomfortable time. It's awkward and messy and no fun at all. I've been blessed beyond measure to have you in it.

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. 

Tuesday, February 25, 2014

Coming Out of the Cancer Closet

The Facebook post went like this:

"Hi friends (& family) -- this is kind of a big thing to put in a status update and I apologize for that, but it's the best way I have for keeping people informed. So here it is -- on Feb. 7th I was diagnosed with breast cancer. Obviously, it was a big shock but we're rolling with it. What we know right now is that the tumor (invasive ductal carcinoma) is small and not very aggressive. My test results thus far are ER/PR positive, HER2 negative, BRCA 1&2 negative, which is what we were hoping for. Feel free to google that stuff for more info if you really want to. We won't know about spread (and therefore about chemo) until after I have surgery, which will likely be sometime in the next month. I'm honestly feeling a lot of peace about things right now, and we're so thankful to be surrounded with loving, praying friends and family. I know many people have experience with cancer themselves and/or with loved ones. It's always great to hear encouraging stories of survival, and we're touched that people care enough to offer well intentioned advice; but please know that Andy and I have sought care and counseling from outstanding doctors (shout out) and facilities that we have total confidence in. All we ask for right now is prayer & positivity. I'll keep you posted when I know more but until then you can expect the obligatory kid posts and occasional rant about squirrels."