Category: survivor

Being Your Own Advocate

~ Jamie ~ 1 Comment

When it comes to health care, you really do hear it all the time.  “You have to be your own advocate.” While I don’t condone spending all your time self-diagnosing on the internet and then searching for a doctor who agrees, I do think that you need to know your body.  You know when something’s not normal and should make sure that your healthcare team gives it proper attention.  But today, I’m speaking more in the customer service realm. The survivorship appointment that’s been repeatedly rescheduled was finally on for Tuesday.  (I should say that very few oncologists even offer this type of appointment, so I was excited at the opportunity.)  Every time my phone rang with an unfamiliar number in the preceding week, I figured the appointment was off.  Just to be sure, I even called to confirm Tuesday morning before leaving the house.  I showed up early for my 9am appointment and was called back to get my vitals taken a little after 9.  Then at 9:25, the nurse who’d taken my vitals came in and shut the door behind her.  Uh-oh. There was a problem, she said, could I reschedule my appointment? Maureen’s schedule should have been blocked, someone made a mistake. No, I could not reschedule, I told her.  As respectfully as I could, I explained the difficulty I’d had getting this appointment scheduled, and asked if Maureen was in the office. There was some back and forth as she left the room to figure out what to do, and finally at 9:45, it was decided that Maureen could see me at 10.  Was that OK, the office manager who was in listening to my concerns asked? “No, it is not OK.  I will wait for 15 more minutes because I’ve already wasted so much time on this appointment, which I think is important. I’m betting many patients would have given up by now and abandoned this all together.  I will wait.  But not because it is OK that you have made me wait.”

I was pretty livid at the way it was handled. I don’t know who is at fault, and it doesn’t really matter.  I made sure that my concerns didn’t go unheard.  More than that, I’m not embarrassed with the way I handled it, I was respectful but firm, and in the end, I got what I needed. And I learned a very important lesson of exactly what it means for me to be my own advocate.

Breast Cancer and My Kiddos

~ Jamie ~ 2 Comments

kiddos breast cancer

I met a young woman last week who was diagnosed with breast cancer a few months before I was and so we instantly started talking about our shared experiences.  Being moms, chemo, baldness, those wretched tissue expanders…  But as we chatted, she said something that left me speechless.  (And this blog would indicate that I am rarely speechless!) She hadn’t told her kids that she had breast cancer.  They range in age from preschool to upper elementary school.  I couldn’t imagine trying to keep that up– making excuses for missing out on activities because of doctors appointments and fatigue, explaining why people were bringing us dinner, hiding a port, scars, post-surgery pain…  But most of all, it exhausted me to think that she couldn’t let her kids know that she was bald.

That’s not the way we decided to handle it for our family.  Let me make it clear though, the way we handled it was definitely the best way. For OUR family. Not the best way for her family, she needed to make that decision, and there’s no way that I would judge her or try to tell her that she did it wrongly.

But it did get me to thinking.  There are probably women who struggle with how to talk to their children about their cancer diagnosis.  Or whether to talk to their children.  And when we had that conversation with the kiddos a year ago, it was a very raw time for me.  That fell into the category of things that I just couldn’t blog.

We decided to wait until we knew for sure the treatment course, I wanted to be sure that the kids got the full information when we had that conversation.  We wanted them to hear the whole story the first time. So once we knew for sure that I would have chemo and then surgery, we sat down with them.  I thought that it was important that we were honest with them and answered their answered their questions truthfully, but I know that there is such a thing as giving kids too much information.  Answer only what they ask, no more.

So when we sat them down, I reminded them that I’d had a couple of doctor’s appointments that week.  Then I told them that the doctors told me I had breast cancer.  Emma Clare gasped. Turner immediately said, “So you’re going to die, right?” Insert knife into heart. As quickly and as confidently as I could muster, I answered.  No. I explained to them that cancer is when some normal cells go out of control and don’t stop growing when they’re supposed to.  If the cancer cells get to an important part of a person’s body, that can make them die.  But my cancer was in my breast, and while they were important for feeding my babies, I didn’t need them to live. So I was going to have to take some pretty nasty medicine to kill the cancer that might make me sick and would make my hair fall out, and I would have surgery so that they could take out all the cancer in my breast.  But the doctors would do their very best to kill all the cancer and then make sure that I felt and looked as good as new when it was all over.  They didn’t love the idea of me being bald, and they really didn’t like the idea of me having to stay in the hospital overnight when I had my surgery.  But after we talked, I had several weeks before chemo started.  They had time to process, ask questions, and get used to the idea. They talked about it with us, with their teachers, with their friends. I think being able to talk about it made it less scary, little by little. By the time they went with me to have my head shaved, they were excited about it, and months later, they were even ok with the surgery, too.

I won’t say that we handled it perfectly.  I won’t say that it was easy. I cried a little.  I was honest and told them I was scared, too. (Maybe I should have been stronger?) At one point, Clay had to take over because my heart was broken, and so was my voice. But we told them that we had so much confidence in my doctors, and more than that, I was confident that God had a plan for me and for our family, and we would come through it all fine.  Believe me, just this week, I’ve had a couple of doses of reality.  Cancer isn’t pretty and pink, it isn’t easy, it doesn’t always have a happy ending, and my kids might not have the most realistic perspective of how bad it can get.  But you know what? I’m totally ok with that.  They’re just kids. They can grow up later.

In Case You Missed It | Alexandria Stylebook

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In case you missed it, I did a guest post last week at Alexandria Stylebook.  I got to play dress up with such nice clothes, lovely jewelry, and fabulous shoes.  After shopping at Zoe Boutique, Kiskadee, and The Shoe Hive, I met with Allison at Bellacara to have my make up done before heading to a studio photo shoot with Sally.

alexandria stylebook run lipstick chemo

I had the opportunity to share my story with a new group of people and talk about why lipstick (and taking time to look my best) was so important to me, and it was such a fun day, too.  Many thanks to the ladies at Alexandria Stylebook!  Head there to read my post.

Happy Cancerversary

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20131003-232137.jpg
August 2012 at Topsail Island. Probably the last picture of me where I was blissfully unaware of the cancer growing in my left breast.

One year ago, on Friday, October 5, I heard the words that would certainly change my life. “Invasive breast cancer… Triple negative…” You hear about mothers who receive inexplicable strength to lift cars off of their children– something takes over and it’s as if they lose the ability to panic. They do what needs to be done, and that’s it. One year ago this weekend, I became that mother. I’m not talking about the physical strength, or even the mom protecting her kiddos, I’m talking about the shutting down of emotion, the getting it done.

I re-read the post where I talked about that call, and honestly teared up when I got to the part where I spoke to my oncologist. She told me it would be a rough year, and then it would be over. I didn’t doubt her, but I don’t know that I totally believed her. I just nodded and made my plans for the next step. Just get it done. And now, this weekend (specifically tomorrow) marks one year since learning I had cancer. Want to know what I’m doing today? Buying a new bra. I’m healthy and out of compression gear. I’m going shopping for the next (much longer) season in my life. I guess my oncologist was right after all. It’s been a year, and now it’s over.

 

Strong vs. Beautiful

~ Jamie ~ 2 Comments

long hair

Have you forgotten what I looked like this time last year?  With long hair?  I nearly have. Crystal took this top image just two days before Dragan shaved my head.  I loved my hair long.  So beautiful.

short hair

This picture is one Sally took last week.  I guess my hair really does look darker, now that I see these two images next to each other.  I was thinking it was closer to the same color as before.  Ah well.  Either way.

Still people ask, will I grow my hair back out?  Still, I answer with uncertainty.  I like it short, and I do get lots of compliments.  But the compliments have changed.  With long hair, those loose waves, usually people told me that I had beautiful hair.  And that’s an awesome compliment.  Who wouldn’t want to be beautiful?  With it short, the compliments are different. “You really rock that short hair.” People tell me that I look fierce, powerful, strong.  And those are great compliments, too.

I think of my family, my husband who fell in love with a girl with a ponytail, my daughter whose long hair is as much a part of her identity as mine used to be, and my sweet boy who is so empathetic that he is attached to my long hair because his sister is.  I imagine they’d love for things to be the way they used to be. And the idea of having that long, flowing hair is certainly attractive to me some days. But I’ve come to realize that even though we shouldn’t judge a book by its cover, most of us do. Hearing you’re beautiful? Always good. But today, I like the idea that when someone I don’t know sees me, words like strong, powerful, or fierce come to mind. I may change my mind tomorrow, but today, I’d rather be strong than beautiful.

Photography: Lily B Photography and Sally Brewer Photography Lipstick: MAC Dubonnet and NARS 413BLKR

Important Things | Coffee

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View More: http://sallybrewer.pass.us/stylelobbycoffee

I was talking on the phone to my mom one morning last week and when she asked my plans for the day, I told her I was meeting a friend for coffee.  She remarked that I sure do meet people for coffee an awful lot.  (Sally brought along her camera when we had coffee with Maria Jose last week, there are more pictures here.)

I was talking to someone else today and they commented that something like cancer puts things in perspective, makes you realize the important things.  It occurred to me, coffee has become one of those important things.  I wasn’t always a coffee drinker, it’s only been the last two or three years that I’ve enjoyed my morning coffee.  Even now, I do enjoy my coffee, but I’m more of a social drinker. And that’s what is really important to me.

Before last year, I still had a preschooler, and time to myself was limited, precious, and usually filled with a busy to-do list.  So with Turner in kindergarten last year, in theory, I did have more time for coffee.  Sally and I joke that cancer made me popular, though.  I had coffee with a few brand new friends and with some old friends who I would have likely met up with regardless. I also got to know better some friends who reached out to me during my treatment.  That time was so special to me, it was fun to spend time with friends old and new, and it was a brilliant distraction. An hour or two (plus the time to get myself ready and back home) pretty much filled my morning but still left me with the afternoon to nap.  Much more fun chatting with a friend than dwelling on cancer and my own mortality.

If I’ve learned one thing from last year, it’s that I have been blessed with countless wonderful friends.  I don’t even have the words to express what they all mean to me. I do love the coffee, but it’s not so much the coffee that’s important, it’s the friend behind the second cup that really matters.  And while the cancer and those blissfully long naps are behind me, I’m not willing to give up my coffee dates.

Update | One Week and Counting

~ Jamie ~ 1 Comment
Because every post needs a photo...
Because every post needs a photo, not because this has anything to do with the post…

Three weeks since surgery.  Which means one more week.  One more week until I can enjoy a really good stretch. One more week of the sports bra.  One more week of the compression bike shorts.  (Can’t bear to call it a girdle.  Even though the website does.  Whatever.)  The bruising is gone, almost all of the glue sealing the incisions is gone, and there’s very little discomfort– only a little tenderness in one spot if I really apply pressure.  I’ll have an appointment just after that week is up and hope to get an all clear at that point. Physically, I feel pretty normal.  I just can’t wait until I can feel normal emotionally, too.

Unloading Some Baggage | Bloomers’ Bra Drive

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bra drive

While I’ve been quite the fan of the “unmentionables counter” at Nordstrom for ages, I’ve been making a more concentrated effort to shop local lately.  I’d often seen Bloomers, but was impressed enough to stop in after reading their philosophy– they describe themselves as the “antithesis of the intimidating lingerie shop” and strive to make sure every woman looks her best in any outfit and has comfortable loungewear that looks lovely and feminine, but is young son-appropriate.  But when I saw the announcement for their upcoming Bra Drive event, I was thrilled! They collect gently used bras to donate to Bra Recyclers who give them to women in need worldwide.  I happen to have a bag of bras that won’t work for me anymore, but I didn’t quite know what to do with them.  I even wonder if I was still hanging on to them out of some misplaced emotional attachment.  Either way, when I’m finally free of this sports bra (incidentally just a week or so before the bra drive!) I’m going to need something different.  I happened to be in Shirlington today and stopped in that Bloomers shop and the woman there was so kind and helpful.  She showed me a couple of different options that I can try when I’m allowed out of the sports bra and I literally can’t wait!  They carry the braGG, designed for reconstructed breasts by two sisters who underwent prophylactic mastectomies because they carry a BRCA mutation.  It’s not the prettiest bra I’ve ever seen, but it’s good to know that the option is available, and I’m sure I’ll at least try one on. Personally, I’m hoping that perhaps one of the Eberjey bras she showed me will work– they’re pretty and unlike most underwire free bras (which I hear may be more comfortable after all these surgeries) they actually look like bras.  At any rate, I’m looking forward to getting rid of some baggage and ditching those old bras at Bloomers on October 12.  But more than that, I’m looking forward to finding something new to wear as I start a new, healthy chapter in my life.

This Little Stool

~ Jamie ~ 1 Comment

this little stool

My brother had a little stool like this one, complete with the adorable little rhyme.  When Emma Clare was little, I didn’t have a stool in the kitchen for her, so she frequently turned her toy microwave on its end to stand on.  My friend, Natalie, was over one day and noticed it, remarking, “That stool looks just like a little microwave.”  Um. Yes, it is a toy microwave. Not the most study of all stools…  A week or two later, she showed up at my house with a lovely wooden stool hand made by her father.  I was skeptical, but she said that because of the way it was made, it was impossible to tip over.  But I give her (and her dad!) credit, with two of the most monkey-like kiddos, in the past probably seven or eight years, it never has turned over!

It is stained the same color as the furniture in our living room and tucks nicely under some nesting tables at the end of the couch, so it’s gone back and forth from the kitchen to the living room for years.  But lately, it’s been living permanently in the kitchen.

After hearing one of those “It’s never happened to one of my patients, knock on wood…” horror stories from my plastic surgeon, I’m being super careful about not reaching my elbows above my shoulders.  The problem is, reaching doesn’t hurt at all, which makes it hard to remember to be good.  Having that little stool to pull around the kitchen with my foot makes it so much easier to have some independence in the kitchen without breaking any rules. I always thought that stool was a thoughtful gift.  But now that it gives me some much needed independence, I really love it.  Thanks, Natalie!

Making Progress

~ Jamie ~ 2 Comments

champion sports bra

Today’s a big day.  My last day in the compression bra.  I’ve been thinking a lot about my compression bra ordeal lately– the ones they sent home from the hospital were so bad, I’m going to talk to my surgeon about some better options.  Not that I’ll ever have to wear one again (and I am SO glad!), but there has to be a better option.  And even the one from Nordstrom that I’ve been washing each night after dinner so that I can wear it again the next morning has some issues.  To really be truly compressive enough, it can’t have any shape, and this one has just a little bit of shape built in, so the only reason it works for me is that it’s a size or two smaller than I currently measure.

Regardless, I’ll be moving to something more like the picture above in a few hours.  I was going in search of my favorite sports bra, and am devastated that it is no longer on the Champion website.  (It’s a good thing I started hoarding them a couple of years ago!) It’s a high support sports bra, which is good for my current needs.  But they key is that it’s more of an old-school sports bra– completely flat.  No fancy ruching, no molded cups, no underwire. To get good post-surgery compression (and the OK from my surgeon), it has to be completely flat. It’s hard to be sure online, but this one looks like a good alternative to my favorite (now discontinued) sports bra.  But probably the best thing about moving to this stage of recovery? Only two more weeks until I can go back to wearing whatever I want!