Missing Cancer | Naps

June 5, 2013 ~ Jamie ~ Leave a comment

While I was on chemo, and for quite a while after, I took a nap just about every single day. I’d skip a day here or there, but for the most part, I napped for two or three hours every afternoon. Sometimes that put a bit of a damper on my fun, I once turned down a lunch invitation to District Taco just to be sure I had time for my nap! I usually had company when I was at the hospital, but occasionally I’d sneak in a nap there, too. My best hospital nap was probably just after this picture was taken, I was in this super teensy room while I waited to get appropriately radioactive for my PET scan. The recliner I was in touched one wall when it was reclined, and my feet were touching the other wall. I can see some people finding it claustrophobic, but it was huge compared to the tube they stuck me in moments later!

I’m missing my naps now, though. There’s something so luxurious about using a nap as a perfectly acceptable excuse to do nothing. Now I’m back to weekends-only naps, and last weekend was too busy, so it’s been a LONG time since I’ve had a nap. Those were the good old days!

This post is part of a series of what I’ll miss from my time as a cancer patient. I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers. I don’t mean to offend by making light of a serious subject. These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.

Love me, love my friends

June 4, 2013 ~ Jamie ~ Leave a comment

All during my cancer treatments, I was so fortunate. I didn’t have an unmet need. Friends would literally fight over the opportunity to bring us meals. Sally would post meal delivery dates, and usually within minutes, all the slots would be filled. Friends watched my kids so that I could go to appointments or even just take a nap. Cupcakes showed up at my door. So did hats, jewelry, magazines, books… We were so well taken care of at my house, I couldn’t have asked for more.

Sadly, I didn’t realize until a little late in the process that there was something more I should have asked for. I should have asked for help for those who were doing so much to help me. Clay is the obvious caregiver, but he was pretty well taken care of, too. (I sometimes wonder if he misses all the yummy meals and treats people would bring us, now that it’s back to me doing all the cooking!) But there were others who cared for me who weren’t as obvious. Luckily, Sally’s husband was able to arrange his schedule so she only had to get a sitter a couple of times to come along to chemo. But frequently she would spend the day with me, and as I returned to find dinner ready and waiting for me, she would drive the 45 minutes home and stop at the store to get what she needed to make dinner for her family. My mom, many hours away, didn’t spend her whole day caring for me only to have to cook dinner. Instead, she would spend my chemo days worrying—despite all my best efforts to convince her that it wasn’t so bad. Please don’t think I’m complaining. (In fact, I think Sally would probably kill me if she thought I was soliciting meals for her!) Lots of people thought of my friends and family! A neighborhood friend watched Sally’s little one while I was in the hospital so she could stop by to visit. Several friends showed up at the hospital to bring Clay lunch, snacks, and magazines to fill the day when I was in surgery. A friend’s cousin (who I’ve only met a couple of times!) offered her home for my family to use when they visited us over Christmas. A good friend of my mom met her for a special lunch while Sally and I celebrated at my last chemo treatment!

I’m definitely more in tune now to see the needs of a fellow cancer patient. I know the things that people did for me that really touched me, perhaps I’ll share some of those some day. But I think one thing that I really learned is that it’s the best friend, the mom, the sister who is the unsung hero. She needs support, too. The challenge I give myself is the same one I hope you’ll take on as your own. Of course, if I have a friend going through something like this, I’ll make her dinner, take her kids, go with her to as many appointments as often as she needs. But I’ll also offer to watch her best friend’s kids. And the next time I see a friend whose good friend is going through a tough time, I’ll do what I can to make it easy for her to be there for her friend. Sally would never have asked, but a meal or a sitter would have made her life easier. My mom didn’t need a sitter, but loved the distraction of a lunch date or shopping adventure on my chemo days. It gives a whole new meaning to the phrase, “Love me, love my friends.”

Running from Fear

June 3, 2013 ~ Jamie ~ 1 Comment

Saturday a woman was attacked near one of my favorite running spots. Thankfully, she wasn’t seriously hurt. But the attacker took something from her. I can’t imagine how long she will struggle to go running by herself again. It turns out, the attacker took something from me, too. He stole my favorite run of the week. There’s something that I really love about my Sunday morning runs. I can get up as early as I want to go as far as I want before hopping in the shower to get ready for church. I don’t have to worry about being in the way while Clay gets ready, and I don’t have to worry about getting the kids to the bus stop. Everything is quiet on Sunday mornings. My house, the streets, the trail. I’ve seen deer, foxes, bunches of bunnies, and the occasional cyclist. There is one older gentleman who runs every Sunday morning, too, and no matter how far I’ve run, we always pass at just about the same spot, when I’m about to get off the trail, to head through the neighborhood back to my house. He was there every Sunday morning when that was my weekly 6 mile run as I prepared for a race a year and a half ago, and as my mileage dropped after that race, I’d still pass him in the same area. Last Sunday, I only managed to run two miles, but they were strong, and it was so reassuring to pass him again. I imagine he’s been there every Sunday morning the past few months, when chemo and surgery managed to convince me to forgo my favorite run. I wonder what he thought as we passed last week—did he ever even notice that we used to pass every week? Did he notice that it had been a while?

Did he notice that I wasn’t there this Sunday morning? That attacker took my favorite run from me this week. Instead of heading to the familiar peace of the trail yesterday morning, I decided to stick to the neighborhood roads. Man, my neighborhood is hilly! Even though it was daylight, I took my flashlight, which I affectionately call my face shredder, just to be extra safe. (A friend in law enforcement suggested I get one—his best bet for personal security.) Really, I should be so thankful that I have such a nice place to run—lovely homes, well cared for sidewalks, friendly neighbors. But still, my ability to make my own choice was taken from me, and that made me angry. When I was running during chemo, I used to imagine what I’d say if someone approached me while running, made me feel threatened. (I should say that I run in a very safe place, but still the mind wanders…) I used to imagine how empowering it would be to rip off my hat and tell someone that I was on chemo—stronger than cancer, stronger than them. And if that didn’t work, I’d threaten to spit on them—the chemo nurse made sure that we knew that our saliva was toxic for a day or two after treatment! Yesterday as I ran, I was thinking how mad I was to have made it this far, past cancer, past chemo, past surgery, only to have my run thwarted because my safety was threatened.

Last night, I finally managed to figure out from some small news items that the place the woman was attacked wasn’t actually on my trail. There is a whole series of trails around us, and the one she was on was more isolated and close to a road to allow an attacker to flee. I wasn’t going to stay away forever, but I guess that means I’ll head back out on the trails for my very next run. I’ve never been one to let fear rule the choices I make, but perhaps I’ll start taking my face shredder, even when it’s not dark. And while I’m sure it’s probably the wise decision, feeling it in my hand will only remind me of why I need it, and that just makes me a little bit sad. But if I’ve learned anything in the last year, it’s that I’m stronger than fear, and so I’ll keep on running.

Little Rewards

May 31, 2013 ~ Jamie ~ 1 Comment

I’m a big fan of rewarding myself—I’ll frequently set little goals with little rewards for completion. When I was trying to get into the habit of running, I didn’t really have any running gear, so my first real running clothes weren’t purchased until I’d run three times a week for six weeks straight. Things like weekly mileage or a longer “long run” earned me more. A couple of weeks before my surgery, Sally and I stopped in Zoe Boutique after our run. Our friend, Susan, owns the shop, and we’ve become friends with the manager, Tara, too, so we love stopping in anytime we’re in the neighborhood. They were getting ready for the annual Old Town Warehouse Sale, and looking through the racks they were preparing to take along, I saw it. My mastectomy reward.

One of the lesser know “perks” of reconstruction is the ability to wear backless or sheer-backed tops without worrying about pesky straps. I would never have considered this lovely blue Alice and Trixie top before, but I decided to try it on. I loved it, and I bought it. Because I could. I was excited to wear it last week when Sally took some photos of me, and since we were using Zoe Boutique as our “home base” while we took pictures around Old Town, we decided to do a few outside our favorite old town shop!

Photography by Sally Brewer Photography

Lipstick: Funny Face by Nars

Kids | From the pen of a kindergartener

May 30, 2013 ~ Jamie ~ Leave a comment

I love getting all the pictures and journals from the kids at the end of the year. This is some of Turner’s writing from the fall. It breaks my heart that he was sad. I am so thankful for a teacher who saw his sadness and asked him to draw what made him feel better. And in true Turner fashion, my cancer takes on the form of an epic battle: “The medicine is fighting the cancer.” I’m so glad that the medicine won this epic battle.

Missing Cancer | Cupcakes

May 29, 2013 ~ Jamie ~ Leave a comment

I arrived home from my first trip to chemo back in November to a super yummy surprise—cupcakes from a local favorite, Bakeshop. During my cancer treatment, my friends overwhelmed me with “little happies” as my friend, Lucy, would say. Lots of cupcakes, cookies, favorite candy, my new favorite salted caramel gelato… Sometimes they’d come as a dessert with dinner, but lots of times, they just showed up on my front porch! I know we all have images of that woman going through chemo treatment who is waif-like thin from being so sick. It turns out now, most breast cancer patients actually gain weight. The anti-nausea meds make it easier to eat, and the steroids even increase appetite. I have to say, with all the cupcakes and other yummy treats that appeared at my house, it’s lucky that I weighed the same when I finished chemo as when I started! But they were so yummy, I would have been ok to have a few extra pounds to lose before summer! Many thanks to all the friends who brightened my day with a sweet “happy!”

Three Negatives Don’t Make a Positive

May 28, 2013 ~ Jamie ~ Leave a comment

There are days that will live in infamy, everyone knows what happened that day, where they were. December 7, 1941. November 22, 1963. September 11, 2001. And for me, Friday, October 5, 2012. A few days before I’d seen a breast surgeon, she was so sure that the cyst she’d aspirated was not anything to worry about that I really wasn’t even thinking about her call. In retrospect, I think I was very lucky those few days—I felt none of the anxiety that so many women feel waiting for pathology results. To be sure, I wanted the fluid sent to pathology, but I wasn’t any more concerned than my surgeon. Early the morning of the fifth, I got up and headed to the hospital for an umbilical hernia repair to make pretty again the belly button ravaged by pregnancy, having totally forgotten about the pending pathology report. The procedure was quick and easy, and I was home sleeping off the meds by noon. I woke to a voicemail from my breast surgeon, telling me that her office would be scheduling me some follow up procedures on Tuesday (Monday was a holiday)—a comprehensive mammogram and an MRI, and that she’d call me back when she was out of her afternoon meeting. Admittedly, those next few hours were pretty anxiety filled. I was super sleepy from my meds and sore on top of that, but didn’t want to go to sleep and not be able to talk to my surgeon when she called back. When I finally talked to her, she told me that the pathology revealed an “abnormality,” and I think she wanted to leave it at that until I would see her the following Wednesday. We had chatted in her office briefly, but she didn’t know my background. Not quite on the level of Reece Witherspoon and the “do you KNOW who I am?” scene, I gave her a thirty second review of my background and asked her to please explain to me the nature the this “abnormality.” (I think I’ll forever dislike that word.) It was like she was the teacher from Charlie Brown. “Wah-wah-wah-wah…” I had to ask her to repeat herself. Invasive ductal carcinoma. I caught my breath and then asked for the ER/PR/HER2 status. ER: negative, PR: negative, HER2: negative. Triple negative. Another deep breath.

Now it’s time for me to don my scientist cap for a moment. (Feel free to skip this paragraph if thinking about science makes your head hurt!) Most normal adult tissue doesn’t grow much, and when it does, the cells have specific ways of knowing when they should grow and when they should stop growing. Cancer cells have figured out ways to exploit or circumvent these normal controls. Receptors on a cell’s surface are one way a cell is alerted to grow, and having far too many of these receptors can allow it to grow uncontrollably. In breast cancer, the estrogen receptor (ER) can be over expressed leading to expression of the progesterone receptor (PR) and ultimately, uncontrolled cell growth. A cell with too much ER tells the pathologist that the cell is using estrogen to grow. Even if the pathologist doesn’t see too much ER, the small amount present could be very active and make a lot of PR, so again, this indicates that the cell is using estrogen signaling to grow. Tumors that are ER and/or PR positive are considered hormone dependent. As a class, these tumors tend to be less aggressive and can frequently be treated with good results using Tamoxifen, which blocks estrogen signaling in the breast. HER2 is another growth factor receptor, and tumors overexpressing HER2 respond well to treatment with Herceptin which specifically targets that receptor.

And then there’s me. Triple negative. There is no specifically targeted therapy for triple negative cancer. Astute followers of this blog may notice that I haven’t discussed my receptor status here before, even though it was the first question I had for the surgeon. Put simply: triple negative is bad. From the instant she said those words, I knew. Chemo, probably AC followed by T. Then a double mastectomy. Then probably radiation. I allowed my brain to think no further into the future than that. Triple negative cancer is, as a class, much more serious—treatment is more aggressive and long term survival isn’t as good. Thankfully, a PET scan a week later showed that I didn’t likely have any nodal involvement—all the cancer was contained in the breast—and that’s very good news. My doctor was so encouraging. I can remember her telling me that triple negative was really bad, but when caught early (like mine) it is very treatable. She told me it would be a rough year, and then it would be over. And so for those who care about me, those who are inclined to look things up online (yes, that includes you, mom!), I kept those words to myself. I’ll write later about my thoughts on looking for medical information online, but in general, it’s best not to. I didn’t want people reading all kinds of horror stories and thinking they would become my story.

In the past few weeks, in preparation for meeting with the Georgetown advocacy group, I’ve started looking into the current trends in breast cancer research, and I’ve found that triple negative breast cancer (TNBC) is a big area of research. I’ve learned all kinds of things that I still think I might rather not know, at least not now. It’s not that I believe that ignorance is bliss, but there is such a thing as having too much information. I’m not sure I was ready to read everything I did. But if you’re tempted (and I repeat, please don’t be!), I did find one report that spoke to my case specifically and was very encouraging. It looked at cases of women who received chemo before surgery like me (called neoadjuvant chemotherapy). Those who had no cancer cells remaining at the time of surgery, who had a complete pathological response, like me, had much improved long term survival. I’m in good company in the shadow of what could have been a very bad situation.

And so October 5 will be a day, though probably not marked on my calendar, that will be forever marked on my mind. Maybe I’ll mark it on my calendar after all. I’m looking forward to being able to celebrate on that day for many, many years to come.

Flashback Friday

May 27, 2013 ~ Jamie ~ Leave a comment

This is how I looked, and more notably, how Emma Clare looked, the last time I went into The Research Building at Georgetown University. September 2004. This photo was taken before we left the house the morning of my dissertation defense. (And before I had a professional photographer following me around all the time!) After this day, I went back at most two or three times that month to go over some minor revisions before I deposited the final copy of my dissertation. Almost nine years later, last Friday, I walked down the old familiar path past the Lombardi Cancer Center, past the icky Koi pond, and through the doors of The Research Building once again. So much has changed since that day, and yet, as I peeked into the room where I spent countless hours in the hood doing cell culture, so much has remained unchanged.

Friday, I wound my way through those familiar halls for my first meeting with the Georgetown Lombardi Breast Cancer Patient Advocacy Committee. I wish I could come up with an easier nickname than GLBCPAC—it doesn’t really just flow off the tongue—but there you have it. Led by a researcher who started her postdoctoral fellowship the same year I left Georgetown, it’s a group of women who proudly call themselves breast cancer survivors (I’m still working on that one!) and volunteer their time to learn more about scientific research in the field of breast cancer. From what I can gather, though none are scientists, many have gone through scientific and policy training to make them effective advocates for breast cancer research. Some of them now work professionally in an advocacy position, some are retired and their volunteer work is now their only job, and some have maintained their original profession and are advocates in their “spare time.” They have served on grant review panels, attended major cancer association annual meetings, and visited congressmen to lobby on behalf of breast cancer researchers and funding. It was a pleasure getting to know them, and they were all so kind as they welcomed me. As we talked about what I hoped to learn from the group, several suggested friends and colleagues they felt I would benefit from meeting. Bright and early Tuesday morning, I’m going to get started following up on some emails and making a phone call or two to start building that network. This group focuses more on research advocacy, though many are also involved in patient support as well, and they are a great resource in so many areas of breast cancer patient advocacy. I’m so excited that I’ll have the opportunity to meet with them monthly over the summer while I’m trying to figure out if and how I’d like to look for a professional position in this field, and I foresee my relationship with these ladies will continue long into the future.

After the meeting was over, I walked down the hall a few doors and stopped into my old lab. I said “hi” to a few familiar faces and sat down and talked for a while with the friend whose bench faced mine all those years ago. The baby she had just before Emma Clare was born is now just a few inches shorter than she! We talked about old friends, kids, travel, cancer. Then I headed over to my mentor’s office and had a lovely chat with her. I was a little apprehensive—some relationships are hard to pick up after so long. But we had such a nice conversation, we spent a little time talking science, the role of patient advocates in the grant review process, and how that process has changed in the past ten years or so. It was an energizing morning. Having never really loved the bench work, when I left the lab nine years ago with that tiny baby on my hip, I never really anticipated I’d be back. And yet, there I was. What a wild ride.

Getting My Model On

May 24, 2013 ~ Jamie ~ Leave a comment

I had the best time this week out and about Old Town with the always lovely Sally of Sally Brewer Photography. I wanted some nice updated photos of myself—I don’t really feel like the old ones with all that hair really look like me anymore! And so we traipsed around Old Town, me doing my very best to not blink while she captured the new, short-haired me! Because that’s how we roll, I changed clothes (and lipstick!) several times, and she photographed me in several different spots. I’ll probably break it up into a few posts because it’s too hard to pick even three or four favorites!

I’m sure not every woman who has gone through breast cancer can find such a fabulous photographer to document her journey and how she’s come through it. I know so many women fear breast cancer will steal their beauty, make them feel less feminine. But I feel like someone who didn’t know the long-haired, pre-surgery Jamie wouldn’t begin to imagine what my body has gone through in the past year. Looking at these pictures, I see a healthy, happy, confident woman. I couldn’t have hoped for more. These photos are such a treasure. Many thanks to my dear friend, Sally.

photography by Sally Brewer Photography

lipstick: Dubonnet by MAC

Missing Cancer | The Bald Head

May 22, 2013 ~ Jamie ~ 1 Comment

Glamorous, I know. The week before surgery I ended up with pink eye, so on top of the bald head, I had to wear my glasses. A post-run shopping outing with a toddler on my back? I couldn’t have felt less fabulous. But how could you not smile at this scene? And I love all those smiles! Babies and really little kiddos were a little afraid of me at first, and elementary kids tended to stare for a while, and I can’t blame them for that. But as soon as I’d smile and act normal, they got over it. Thankfully, I never felt like I got too many pity-filled glances from adults. But what I loved—the young adults who told me I could really rock a bald head, and the old ladies—they were the best. I’m betting many of them saw themselves or their friends in the first glimpse of my bald head and smiled to encourage me. Little old ladies love a bald girl, but it turns out they’re a little less enthusiastic when they’re trying to figure out if I’m growing out my post-chemo hair or if I’m sporting a lesbian-chic look! I don’t get nearly as much old lady love now that I’ve got enough hair to put product in! (And speaking of hair, Sally and I went on a photo session/adventure yesterday, I’ll be sure to post some pics of my sleek new ‘do when she passes them along!)

This is the first in a series of what I’ll miss from my time as a cancer patient. I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers. I don’t mean to offend by making light of a serious subject. These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.