How To Not Get Breast Cancer

June 16, 2014 ~ Jamie ~ Leave a comment

I’m getting a little weary of the new story that comes out what seems like every other week about something that is “associated” with an “increased risk” of breast cancer. I worry that some women might feel to blame for their breast cancer diagnosis, and that others might feel empowered because since they don’t meet the new risky criteria, they are safe and can forgo screening. I feel like a lot of those studies end up with little validity– they scare, they place blame, they confuse. So I headed to the CDC to see what changes a woman’s risk for breast cancer, I decided I’d let them comb through all the data and vet all the studies.

They found that breast cancer risk is decreased by being older when you start menstruating, having babies– at a younger age– and breastfeeding them, getting regular exercise, and maintaining a healthy weight. (For the record, I was the last of my friends to get my period, had my first baby at 27– not super young, but well before my doctor would have to pronounce me of “advanced maternal age”, and I nursed my babies for a total of 26 months. I’ve always been at a healthy weight and have been regularly exercising for at least the last four years.) A woman’s breast cancer risk is increased if she has taken hormone replacement therapy, has a personal or family history of breast cancer, has had radiation therapy to the chest, was exposed to DES in utero, has dense breasts, drinks alcohol, or works the night shift. (Again for the record, no personal history of breast cancer or benign breast disease, one (ONE!) aunt with breast cancer, no radiation therapy, no hormones or DES, maybe dense breasts, I don’t work the night shift, and I don’t drink alcohol. Not a drop. Never have.)

Basically, if I were reading the CDC document as a how-to list to avoid cancer, I would have checked almost every single box. Of course, I am also far younger than the average woman diagnosed with breast cancer, and triple negative breast cancer (with which I was diagnosed) is far more prevalent in the African American population. And yet, I had breast cancer. I “did” everything right– right down to getting my period super late and being white. And yet, I had breast cancer. I’m not sure why I bring this up– it’s not very actionable data, after all. I guess it’s to say that even most of the associations that have been validated are not something we can really do anything about, and even if we could change some of these factors, they’re not a guarantee, either. Though valid, the association isn’t that strong. Yes, I would love to know what causes breast cancer. But given all the research and time that has gone into its study, I think it is fair to say that it is not one thing that causes all breast cancer. Which means that it will not likely be one thing that prevents or cures all breast cancer. Certainly, research into the causes of breast cancer will lead to better prevention and treatment of the disease. But in the meantime, women are diagnosed with breast cancer everyday, and we don’t know why. I guess that’s why, even though data indicate that mammography may not be the holy grail it was once thought to be*, I’ll still err on the side of mammograms. Overdiagnosis and overtreatment aren’t insignificant issues, either to the healthcare system, or the individual. But neither is cancer. Somehow, I think until I knew for sure that checking off all the boxes on my list would keep me safe, I’d risk a few extra pokes of a biopsy needle, or even a few rounds of chemo.

*This is a good discussion for the patient on the debate on screening mammograms from the Mayo Clinic

Post Surgery Update

June 13, 2014 ~ Jamie ~ Leave a comment

A friend texted me yesterday to admit to facebook stalking me to find out how I was doing. Perhaps she wasn’t the only curious one…

I’m doing fine. This morning, I woke up feeling much less sore, so I think I’ll be going without pain pills today. Wednesday and Thursday, I was definitely pretty sore, but still functional. My plan had been to avoid percocet since it makes me itchy, but I was apprehensive about taking Vicodin, as at least I knew percocet wouldn’t make me nauseated. The good news: Vicodin didn’t make me itchy or nauseated. The bad: it didn’t help with my pain. So yesterday I switched to percocet, and thankfully the itching wasn’t as bad as before, though that stuff totally throws me into a haze. Glad to be going med-free today!

I’m also about to take my first shower in an embarrassingly long time. (Though it was doctor mandated, I’m not just gross!) I’m looking forward to that special first shower clean, and to ditching the foam pads that are adding an extra layer on my thighs. The big question is whether I’ll be able to get all the little purple “x” marks off my chest so that I can wear a regular shirt.

I’ve enjoyed my two days as a patient, spending most of the school day in bed, either resting, on the computer, or watching bad tv. But my days of leisure are over– it’s a good thing I don’t think I need those meds anymore, because today I’m headed to school to learn all about colonial life from the fourth graders. A little time to relax is nice, but two days is probably all I can hope for at the end of the school year. So I guess I’d better go hop in the shower.

And for the record, for those who are following my car saga, I do not get a new car. But the dealer is honoring the just expired warranty and rebuilding the transmission. I’m supposed to get it back by Monday. I suppose a week when I’m all drugged up is as good a time as any to be without a car.

What to Wear | Post-Surgery

June 12, 2014 ~ Jamie ~ Leave a comment

photo 2 - Copy (2)

I hadn’t planned to do another what to wear post, but after chatting at the bus stop, I decided to take another picture in my dirty mirror. We were discussing all the compression garments I was wearing– yes, I was complaining. Again. There are foam pads a quarter inch thick on the outside of each thigh, another one on my stomach. I’ve got on a lovely, lace trimmed compression bra, a super tight abdominal binder, and of course, the girdle that goes down nearly to my knees. I decided to share the outfit when one friend mentioned she had no idea all the “business” I had going on underneath. Oh yes, there’s a lot of business going on up under there. A dark skirt that’s not too clingy hides the girdle and foam pads on my thighs, and the high collar and boxy shape of the tee hide the compression bra and at least most of the bulkiness of the shoulder strap flaps.

The abdominal binder means that he did end up using my belly fat for the fat grafting. But he was a good sport, so tried my flank first, since it was my first choice. Which means that I have double the compression, double the pain. But maybe half the fat? Let’s go with that.

What to Wear | Surgery Day

June 10, 2014 ~ Jamie ~ Leave a comment

what to wear surgery

Today’s the big day– hopefully the last surgery day. And you know me– what I’m wearing is deliberate and planned out. Of course, I need the maxi skirt for the compression gear that comes later. This hoodie has become a surgery staple for me. When you’re having breast surgery, you aren’t allowed to raise your arms over your head, so something that buttons or zips up is a necessity. This one is great because it’s light weight and loose fitting. Flip flops are easy, and the glasses (ugh) are a must. I think I need some new glasses.

surgery bag

I’ve got my bag all packed too. Less is more. I might add a book or single magazine, or maybe my little computer. But really, there are so many people coming and going, asking your birth date and why you are having surgery in your own words. (Maybe I’ll have to be creative on that one!) But there isn’t a lot of free time, so you don’t need a lot to fill it. But with surgery at 2pm and no food after midnight, I’m already starving, so I hit up the Rite Aid this morning so that I had a couple of favorite treats waiting for me as soon as I get the green light. (Will update on my facebook page this evening.)

The Waiting Game | Customer Service and Medicine

June 9, 2014 ~ Jamie ~ 1 Comment

I was fortunate enough to attend the REV2014 conference a few weeks ago. It was sponsored by Livestrong and the Conquer Cancer Foundation, and combined physicians, pharmaceutical companies, policy experts, and patients and advocates to come up with actionable solutions to problems in cancer care. I was part of a discussion on improving quality of care, and much of our time focused on what “quality” meant to us. Of course, no one would consider they had received quality care if their physician was not competent. And yet, we all agreed that how a patient feels about their experience depends on so much more than competence. A patient wants to be listened to, understood, respected. We want to feel like we have all the information to make the best decision on our own.

In general, there are few things that irritate me more than someone who says they will do something and fails to follow through. On Friday as my surgeon declared that she would “eat her hat” if there was anything troublesome in the pathology of the orzo/rice/fat glob, she assured me that she would give me a call Tuesday afternoon. I avoided dwelling on the pathology report over the weekend– it helped that we had a busy weekend. The boys were camping and Emma Clare and I had a girls night. We had two different parties on Saturday, and Sunday after church, Clay brought home our new puppy, Trixie. Definitely no time to worry about a pathology report. Monday came and went, and I stayed pretty busy on Tuesday, too. But by Tuesday afternoon, I was careful to keep my phone nearby, jumping anytime it rang. And the call never came. Wednesday was busy too, and even though I was leading a fourth grade sewing group in the library at the school, I left my ringer on so that I wouldn’t miss the call. I finally called my surgeon’s office, and was given the message that the report wasn’t back from pathology. I cooked dinner on the grill and tucked my phone in the waistband of my skirt since I didn’t have a pocket and didn’t want to miss the call when I headed out to flip the burgers. Still no call. And even though I didn’t silence it, I checked my phone during every break in action at handbells, in case I’d missed hearing my phone ring because of the music. Nothing. Thursday morning, I left the new puppy in the yard to learn how to spend some time by herself. But mostly, I left her because without pockets (again), I couldn’t take the puppy, my coffee, and my phone. Sorry, puppy, but the phone and the coffee won out. It turns out that I made the right choice, Trixie finally fell asleep by herself on the porch, and I finally got the phone call for which I’d been waiting. Benign. Exhale.

I don’t have a lot of experience at the waiting game, since the first time around I was so sure (and so assured by my doctor) that I didn’t need to worry about that cyst, I didn’t worry. Honestly, I pretty much forgot all about it. Also, I think she called me a few days before she told me to expect a call. (Good plan!) Once I’d been diagnosed with cancer, I didn’t worry much about the results of all the diagnostic tests, knowing that, while informative, they wouldn’t change the next step of treatment. But waiting for a cancer/no cancer call is tough.

I really like my surgeon and the office staff– they were so fabulous when I was first diagnosed with cancer, and I am completely confident in her skills as a surgeon. The thing is, if she’d have told me that she’d call me by Thursday, I’d have not obsessed most of Tuesday and all day Wednesday. A call a day or two early would have been a pleasant surprise. And after I called on Wednesday, it would have been nice if my surgeon’s assistant had spoken to me to let me know that they were sorry and would call to light a fire under the people in pathology. Neither of those things would have changed the results of the pathology, and I wouldn’t have gotten the results any sooner. And yet, they would have made a difference. The quality of my care (from the standpoint of medical competence) wouldn’t have changed a bit, but my quality of my life would have been greatly improved, even if just for a few days.

Sometimes You Just Have To Be A Mom

June 5, 2014 ~ Jamie ~ Leave a comment

ultrasound

It’s so funny, when you are pregnant (and have only had good pregnancies), the opportunity to have an ultrasound is so exciting. But one bad experience, and seeing a machine like this loses all its fun. Excitement is replaced with anxiety. The ultrasound machine is also a staple for breast imaging, but since there’s no hope of getting an early glimpse of a precious, tiny baby, it’s no fun. When your best hope is to see a cyst or a glob of fat, it’s easy to loathe the sight of this machine.

Last week, a very tiny nodule that I’d been trying to ignore for a week or so finally reached a critical level for me. They say you should wait for any symptom to continue for two weeks before reporting it, so I’d been trying to put it out of my mind to see if it would resolve. But after two weeks, the nodule (I refuse to call it a lump because it’s so tiny, and somehow it helps me emotionally not to have to say I have another lump in my breast) was still there, though still as tiny as a piece of orzo. In the mean time, I’d managed to find another nodule, maybe the size of a half grain of rice, just adjacent to it.

I hated to call my surgeon, knowing that it’s probably nothing. I hate to be an annoying patient. Yet, I know that being observant and quick to act worked to my advantage before, so I can’t quite accept my own half hearted assurance that it’s probably nothing. I called and they couldn’t see me until mid-July. This made me realize how my original cancer diagnosis really was an answer to an unprayed prayer. I called about that lump and was able to be seen the next morning. Now, as an established patient with a history of cancer, calling about a lump on the same side as the original cancer, I had to wait six weeks for an appointment. I took that appointment, but knew that I’d be seeing my plastic surgeon later that morning. He felt what I had, and assured me that it was likely an artifact of healing after surgery, but that I should have my surgical oncologist check it out. When I mentioned that I had an appointment in July, he said he’d send her an email. I was rescheduled that afternoon and had an appointment in two days. (Love my doctors!)

It wasn’t a great appointment time for me, I had to miss the first grade play and would be late to the bus stop. But I needed to take it, and I need to do all the mom duties, too. So I saw the dress rehearsal of the play and got a friend to cover for me at the bus stop. My surgeon applauded my self-examination skills (I think she was shocked that I’d found such tiny bumps, it took her a little bit of effort to find them!) and was able to find them quickly with the ultrasound. They looked like little fat globs on ultrasound, so my options were “watch and wait” or biopsy. At this point in my life, with my history and personality, I can tell you that “watch and wait” will almost never be an acceptable solution to me. So we headed over to the procedure room and prepped for a biopsy.

I thought of the last time I lay on that table. And then I forced myself not to think of the last time. She was able to aspirate the area, and thankfully that meant I wouldn’t need to have a core biopsy. She assured me that it was nothing. She would “eat her hat” if pathology revealed anything abnormal. I have this crazy response to physiological stress– my teeth chatter. It’s worse if I’m cold, but it doesn’t happen because I’m cold. I remember it happening after at least one of my kids was born, and it’s happened after most procedures I’ve had during the whole cancer thing. Once again, I put my shirt back on and fought to keep my teeth from chattering audibly as I left the office. And because I’m a mom, I hopped in the car and headed to the bus stop, hoping the chattering would stop before I arrived. I left the air conditioning off and the windows rolled up, and the warmth of a car in June helped calm my chattering teeth just in time. I parked (illegally), hugged the kids, and sat to chat with the crew. I could worry about that pathology later. But right then, I just needed to be a mom.

(Just got back from the bus stop, where I heard from the doctor’s office– the cyst she aspirated was benign. So I guess she won’t have to eat her hat after all.)

Pre-Op Checklist and a Physician Mandated Trip to Nordstrom

June 4, 2014 ~ Jamie ~ Leave a comment

pre op tubes This week I needed to head back to the hospital for another round of pre-op questions and tests. I decided to combine the stop at the pharmacy (to drop off the heavy antibiotics and narcotics scripts for post-surgery) and the trip to the hospital with my morning run. The whole trip would only be 3-4 miles, but I failed to realize that the first mile and a half was almost completely uphill. I think I’ve been spending too much time on the nice flat parts of the trail– I’ve forgotten what a workout those hills can be!

Between the hills and the fact that it is June, I was pretty sweaty by the time I got to the hospital. Everyone kept offering the empty chair next to them, but I was too sweaty to sit in a chair! So I hung out with my Spotify tunes and water bottle on the floor. The woman who pre-registered me for surgery has pre-registered me at least once or twice before. It’s always a little strange when someone at such a huge place recognizes me. And the woman doing the blood draw was also a familiar face. Next time (though let’s hope there’s not a next time!) I’m going to have to remember to ask her not to use the tape that they put on after the blood draw, a band aid would be fine. It left a much bigger mark than the needle!

I also had the requisite 30 minute nurse phone interview where I had to recount my entire medical history. I can’t imagine what that phone call must be like for someone who’s older and has lots of meds and decades of surgeries to recall. Mostly, after I went through my surgeries list, I just said “no” a lot. I’m apparently as healthy as a horse. Except for that pesky cancer.

So surgery’s coming up next week. I’m hopeful for an easy recovery. I’m not supposed to run for six weeks, but I did get my surgeon to concede that I could ride a bike, so I’ll have to do that. I don’t have to wear a compression bra, but I wasn’t in love with the compression gear he suggested if he does lipo on my tummy. This would be a good time to point out that it never hurts to ask if you have a question. While the high waist girdle with suspenders (so wretched for July!) was the best option from the company whose brochures they have in the office, a quick chat with Cami let me know that a pair of high waisted spanx from Nordstrom would provide just as much compression without the waistband issue that they’d had with the non-suspsender girdle. And since the Spanx don’t have zippers down the side, they can go in my regular Spanx rotation. Win-win. One more trip to Nordstrom, a few last runs, and I’ll be ready to head back to the familiar confines of outpatient surgery.

What to Wear to the Plastic Surgeon | Fat Grafting and Liposuction Edition

May 29, 2014 ~ Jamie ~ 4 Comments

Today as I was getting ready to head to the plastic surgeon’s office for my pre-op appointment, I went, yet again, through the long process of deciding what to wear. It was hot, a perfect day to wear a dress. Only, once you have breast cancer, every doctor wants you to undress from the waist up before you don a paper gown. So no dress or you end up wearing nothing under that lovely paper gown. So jeans maybe. Only, no jeans that are too low rise, remember you’re sitting on a table sans shirt, and well, you know. Also no jeans that are too tight at the waist. Nobody wants to show off a muffin top. But after choosing just the right jeans/short/skirt, you’re not done. If it’s a visit involving liposuction (which mine was– for the fat grafting) you need to wear the good panties. You’ll have to be able to drop trou to show off your “donor sites.” Which means you get to show off the parts of your body that you think are the fattest. Awesome. Tummy as a donor site means just unzipping, but if you’re considering the flank (yep, that made me feel a bit like livestock) you have to shimmy down those shorts all the way to show off your outer thighs. Which is a good time to point out that you should consider doing all your <ahem> grooming before this appointment. Not only is this important for the part in the office with the surgeon, but also the part later where pictures are taken. No paper gown, pants around your ankles, and someone takes pictures of you in your panties (I told you to wear the good ones!), zooming in on your breasts and your fat parts. I mean, donor sites. So when I said you need to be comfortable with your plastic surgeon and the staff, I really wasn’t kidding.

The good news from my appointment today is that my surgeon said that I don’t have to wear the compression bra after the surgery. That’s huge. His real concern is that donor site, which, let’s face it, could use some compressing anyway. So I’ll have four to six weeks in that compression gear. The not so good news– while he said that there is “ample volume” (thanks) to use the flank as a donor site, the fat might not be quality fat. Apparently, all fat is not created equal, and since he already did liposuction in that area, it might have compromised the quality of the fat for future use. So we chose my abdomen as a back up donor site. I’m not thrilled with that prospect because it means wearing the high waist girdle, which will be pretty hot in the summer months. You know you’ve reached some sort of low when you’re hoping to just wear the low waist girdle for six weeks. So fingers crossed that my flank has some good, quality fat. At least I only have to wait a couple more weeks until I know whether my fat is quality fat. And until I can begin the countdown to the “this is really the last time I wear compression gear” day.

Kids Will Be Kids | (And a Pixie Grow-out Update)

May 27, 2014 ~ Jamie ~ 2 Comments

zoo with turner

After my haircut last week, I was a chaperone on the first grade zoo field trip. Being in charge of a big group of kids at the zoo is a nightmare. On this trip, though, they make a big deal out of getting a lot of parents to go, so I ended up in charge of Turner. And that’s it. Ironically, I realized that Turner and I haven’t gone on many adventures by ourselves, we always had Emma Clare in tow. He was so cute, holding my hand, and he was in charge of the map– choosing our next stop and directing us to our destination. (Which was probably a good thing, knowing my sense of direction!) The arrival of three new elephants to the zoo complicated things and kept our time there short, but it was fun to have some one on one time with my boy.

unicorn with ec Lest anyone worry that my hair is getting too short with all the cutting, Emma Clare would assure you that it is growing. At the bus stop, she decided that I was ready for a more sophisticated hairstyle. She calls it my unicorn ponytail. I haven’t had a lot of girl time with this precious one, either. But this weekend the boys are going camping, so I’m sure she’ll have some big plans for us. (I’m also nearly sure that it will involve Chick-fil-A and a pedicure!)

Social Media and Cancer

May 22, 2014 ~ Jamie ~ Leave a comment

(This is an old picture. I’ll try to get something of my new haircut soon!)

Sadly, I have to admit that my phone is never too far from my hand. It can definitely be a big distraction from real life, but it can also be a very powerful tool. More than once, my mom has called me on a Monday morning to tell me that an acquaintance passed away over the weekend. She was incredulous that I already knew. From Facebook. (In this case, the word Facebook must be read with an evil, raspy voice.) To be sure, there are people who share things they shouldn’t online. But I quickly found that, when used appropriately, the internet could make my life much easier when it came to my cancer.

Helping Hands: My friends set up a Helping Hands site that was wonderful. It let us set up a calendar where we could add tasks that I could use help with– dinners and play dates were my main needs. Other friends have also added things like rides to treatment or help running errands. Somehow, it made it easier for me to ask for help, knowing that people had the freedom to sign up to help or not– there was no pressure. The Helping Hands site also had a place for a journal, which is where this blog began. Friends and family could check in every once in a while, or they could sign up to receive emails anytime I posted something new. (You can subscribe to new posts on this site, too, by signing up at the box on the right.) There are other similar sites– CaringBridge has a journal but no calendar sign ups, and yes, there’s an app for that. StandWith is in its final stages of development, and will let you push specificrequests to certain groups of people (maybe rides to treatment to close friends, meal requests to acquaintances).
Facebook: As much as my mom hated that I found out about someone’s death on Facebook before she told me, the truth is, it was shared by someone who had the right to share. Facebook is a great way to connect with family and friends, sharing information with lots of people in a single click. It gives them a place to respond without feeling like they’re bothering anyone. I always made it a point to post a picture of myself on chemo day to let people know that I was doing ok. It wasn’t a sad place, and I may have been plugged into a machine delivering poison to my body, but I was smiling and enjoying some kid-free time with a friend. Now I use my Run | Lipstick | Chemo facebook page to share new blog posts and other cancer related stuff.
Twitter: Yep, I’m on twitter now. A twitter friend (I’d give credit, but I don’t remember who deserves it!) said it best: Facebook is for the people who love you, Twitter is for the people who understand you. I do interact with some real-life family and friends on twitter, but most of my interactions are with people with whom I share a common interest, but who I’ll probably never meet. I’ve made some great connections on twitter with others who’ve gone through breast cancer and some of the most caring care providers. Getting involved in the #bcsm (breast cancer social media) group has given me new perspectives, new friends, new things to think about. And it’s a wonderful feeling to walk into a conference venue with hundreds of people, knowing that while you haven’t met them in person (yet), you have friends in the room.
Instagram: Nope. Maybe some day, but I’m just not there. Plus my high school girls tell me that parents should not have Instagram. So I guess I’l steer clear for now, I’m not risking my “cool mom” status with those girls!
Blogging: This blog started as part of the Helping Hands site, and it was a way for me to disseminate accurate information quickly and easily. I chose to keep my Helping Hands site was private, one of the administrators had to approve anyone who wanted to be part of the community. This blog is a whole different story. I still like the idea of the control the blog gives me– there’s no reason for anyone to hear third-hand what’s going on with my health and get things entirely wrong because the story has been passed around so many times. But the more public forum of a wordpress blog, while sacrificing some privacy, helps me reach out to a much larger breast cancer community. I hope that my story might help someone. I hope that maybe someone will read my words and have a new perspective, a new question for her doctor, a new way to help her friend. But it wouldn’t be honest to say that writing this blog is entirely altruistic. Writing helps me. The people I’ve met, hearing their stories, sharing their successes, it all helps me.

We definitely have to be careful about the information that we share online and on social media. And after talking at length about nipples, it may be a hard sell to tell you that there are things that I edit, things I keep out of this blog. I don’t share everything, but I strive for honesty in my voice. I share what I would want to know, the things I’ve looked for, coming up empty. I try to remember that anyone can see my words, my images– something that I remind those high school girls about all the time. (They’re probably tired of hearing how I nixed one potential babysitter because she was holding a red solo cup in her profile pic!) But at the same time I worry that anyone can see my posts, I am in awe of the fact that anyone can see my posts. Anyone. Anyone who just heard her doctor tell her that she has breast cancer. Anyone who is worried how her kids will react to her hair loss from chemo. Anyone who wonders what it’s like to get a nipple tattoo or to grow out her hair post chemo. I do try to remember to put down my phone for a while each day and just engage with the people around me. But I’m so thankful for the tools that connect me with so many people– with friends I know in real life, with people with whom I’ve only shared stories on a screen, with anyone.