Prescription: District Taco | PTSD and Cancer

April 7, 2014 ~ Jamie ~ 2 Comments

Slowly but surely, I’m finding friends, groups, communities where women feel free to share their experiences with breast cancer. While every single woman is different, it’s remarkable how we are all united by our experiences. And while I know we all hate that someone else feels the same way we do, it’s so comforting to not be the only one feeling that way. It is so reassuring to realize that what you’re feeling is normal.

Last week, I took part in a discussion* on twitter about PTSD and cancer. Yes, that’s post traumatic stress disorder, but in survivors of cancer instead of war or natural disaster. I read up on PTSD before the discussion, and found that it is characterized by an extreme reaction to a trigger that reminds the patient of the trauma. I hadn’t ever thought about PTSD in terms of cancer. Apparently, many people will avoid driving the same route they had to go to chemo. PTSD interferes with some peoples’ ability to go to check ups with their oncologists because of the extreme reaction just to walking into the office. Even a simple sound or smell can trigger extreme anxiety. While I certainly have more anxiety about little aches and pains than I did pre-cancer, I quickly realized that I am fortunate that I do not have full-on panic attacks as I drive past Virginia Hospital Center. For those suffering from true PTSD in relation to their breast cancer diagnosis and treatment, the doctor moderating the discussion suggested the women slowly ease themselves back into the situation that causes their anxiety. I guess forcing new experiences on top of the old trauma will eventually help neutralize the strong anxiety.

As I was listening to the discussion, they mentioned that many patients experience this avoidance without such an extreme reaction. And then it hit me. Maybe this is the reason I tend to avoid District Taco. When Sally and I discovered it, just after the taco truck became a full-fledged restaurant, I would find any excuse to eat there. Since it’s close to me and not Sally, she and I would eat there almost any time she was in the neighborhood. Which included after many of my chemo and doctor appointments. By the time I finished chemo, I really wasn’t all that interested in eating there anymore. I know all about food aversions associated with being sick, but since chemo never made me sick, I figured that had nothing to do with it. I’ve been back and didn’t have a panic attack, the food was as yummy as ever, but my enthusiasm is clearly dampened. But as it turns out, it’s apparently pretty normal that my brain shies away from things that remind it of chemo. And to retrain my brain, a real, bona fide doctor said that I need to eat more District Taco. (Kind of, but I’m going to run with it.) That’s a prescription that’s easy to take.

*The #bcsm chat occurs every Monday night at 9pm on twitter.

Missing Cancer | Doctor Appointments

March 31, 2014 ~ Jamie ~ 1 Comment

The view from the exam table at my plastic surgeon's office — The very familiar view from the exam table at my plastic surgeon’s office

I was talking with a few women last week, all of us had been through breast cancer treatment or were in the midst of it. We talked about lots of things, but eventually got to talking about our doctor appointments. During treatment, I might have one week with no appointments, but the next week, there was at least one appointment and one trip to chemo. Even after chemo was over, I had countless pre-surgical and post-surgical appointments. I sat in this exam room once every week or two for months going through the expansion process that led up to my final reconstructive surgery. Even after that final surgery, there are still lots of follow ups.

After spending so much time with kind, compassionate doctors, it’s like leaving friends behind once you’re released to visit only once every six months. Every woman who had finished her treatment could remember the strange feeling of saying goodbye to a favorite doctor and the staff. Being free of all those appointments and interventions should be cause for celebration! But as much as we all loved seeing the familiar faces, there is a reassurance when you see a doctor every week or two. Even if they’re not doing any scans, even if you are seeing a surgeon who is primarily concerned with aesthetics. There is reassurance to knowing that you are in the presence of a trained physician, surely if he says you’re ok, then you’re ok. Even if it’s just a chat, surely the oncologist can see if there is a problem, right?

I truly enjoy chatting with my physicians, we usually talk far more about non-medical things. I feel certain that, had I met them under other circumstances, we would have been friends. But there is the subconscious, the unverbalized reason that it’s hard to wait six months before heading back to put on that awful “open in the front” paper gown. There something so reassuring about hearing a professional tell you everything is ok. So now I’m hoping that it’s reassuring enough to last for six months, until my next appointment. I definitely didn’t recognize it at the time, but I really do miss all those appointments.

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.

Because Someone Else said, “Yes” | Participating in Research Studies

December 9, 2013 ~ Jamie ~ Leave a comment

I’m really enjoying being a part of the patient advocacy group at Georgetown. Each meeting, we discuss many topics, and I always enjoy when the clinician who is part of our groups talks about the new clinical trials and research studies that are available for breast cancer patients at Lombardi. Frequently, clinicians and researchers will ask us to help them improve recruitment for their studies.

People who are diagnosed with late stage disease are frequently eager to participate in a study– a clinical trial– with the hope that helping test some new drug will cure them. Of course, that’s always a possibility. And for that hope, they will usually gladly go through extra biopsies, blood draws, hair pulls (not even kidding!), and endless paperwork. All those extra steps are a much harder sell to a woman diagnosed with early stage disease, whose participation in the study won’t get her anything other than standard of care and all that extra stuff to allow researchers to amass data.

But a woman in our group at Georgetown had been speaking to a group about clinical research studies, and something that she said really stuck with me. “I’m here because someone else said, ‘yes.'” Such a simple, profound statement. Breast surgery has come a long way, and the introduction of Tamoxifen, aromatase inhibitors, and Herceptin, which target specific tumor types, have improved treatment options and survival for many patients. Still, some breast cancer patients will recur after treatment, and figuring out who will recur and how to prevent that recurrance is a growing area in research. There is a lot of excitement about the new “Georgetown Method” which could allow doctors to grow a patient’s actual tumor cells quickly in the lab and treat them with a variety of drugs to see which treatments will be most effective for that specific patient, preventing recurrance and substantially increasing long term survival. (Read about it in the Lombardi Magazine starting on page 10.) Yet, for all these advances, and for all those that are to come, patient involvement, often without any promise of personal gain, is so crucial.

Especially for those receiving treatment at a teaching hospital, there are many opportunities for participation in research studies. Right after being diagnosed with cancer, a patient has so many decisions to make, appointments to make and keep, papers to fill out. And since many studies seem like a lot of work for the patient for mere data collection without the promise of any wonder drug, it is easy to see why a patient would be reluctant. If there’s ever a time to be selfish, it’s when you have cancer, right? And yet, many women with breast cancer have chosen to put away their cancer card and give up that right to be selfish. Their willingness to participate has given doctors invaluable information that continues to impact the way patients are treated. So to those women who have taken the time, dealt with all the extra assaults to their body, I say thank you. I am here because they said, “yes.”

Breast Cancer and My Kiddos

October 9, 2013 ~ 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.

Beware the internet

July 31, 2013 ~ Jamie ~ Leave a comment

jamieround1-103 — Googling (wigs, not medical info!) while at my first chemo treatment

I know it seems strange, me being here on the internet and all, telling you to stay off the internet. The internet is a wonderful place– I can quickly find information, do some shopping, converse with old friends. But there is a danger, too. Anyone can put anything they want on the internet. So when it comes to important things, health information, say, I’d steer clear of the internet. Granted, there will be times when you have a question and can’t ask the doctor, or don’t want to trouble her, or you think it’s not important. First of all, bother your doctor! Making sure you are healthy, that you understand what you need to do, what you need to look for– that’s her job. But if you’re tempted to look online before the office opens, there are a few thing you should consider.

Consider the source: If I’m Googling for something medical, I’m not even clicking on the link if the address isn’t from a reputable source. I’m talking something like Mayo Clinic, MD Anderson, or NIH. Since I have a science background, I’ll sometimes read an article from a scientific publication, but those can be a little heavy for people who aren’t accustomed to reading such literature. Plus, any treatments they are studying are likely to be years away from use in the clinical setting, so they’re not all that applicable to someone looking for timely information.
Consider the publication date: Even if it looks like a super reputable source, if it’s five years old, the information isn’t really going to be helpful. Treatments have changed so much in the past few years, and so have the support meds. Times change, treatments change, experiences change.
Stay off the chat groups and blogs: Yep, I’ll say it again. When you’ve heard one person’s story, you’ve heard one person’s story. So many people who are compelled to share their stories online have had a bad experience. They seem angry, they seem bitter. I’m not going to tell someone how to feel, but I don’t think that feeling angry makes the situation any better, and if you’re trying to keep a positive attitude, you don’t want to hang out with bitter people. Garbage in, garbage out.

Just this week I was thinking about something that I’d “looked up” right away after hearing about it, but realized that it was in the pre-internet days, and I wondered how I did it. It’s hard to imagine needing to find information and not being able to find it almost immediately with a few taps of your fingers. But when it comes to really important health information, think before you Google. Check the source, the date, and the attitude. If any of the three seem hinky, move on. There are plenty of other places to get your information. Like your doctor.

Not again…

July 2, 2013 ~ Jamie ~ Leave a comment

Just did my makeup in preparation for a dinner out with family, and noticed something for the second time. Have you ever noticed that the first time you see something you don’t love, you try to overlook it– maybe it will go away? I’m pretty sure I do that. I seem to remember thinking before when I put on mascara that there was an area of lashes on my left eye that was getting sparse. I had just been thinking how long my lashes had gotten, that they were better than they ever were pre-chemo. So the right eye is still pretty great, but there’s that area that’s a little thin on the other side. I’m still crossing my fingers that it’s completely normal and I’m just being hyper-sensitive, but I’m a little worried that maybe there’s another round to fall out. Seems unlikely, but the first time they fell out wasn’t until I’d been done with chemo for nearly six weeks, so it’s hard to say. I’m not looking forward to doing the false eyelashes on a daily basis again, but at least I’ve got some practice, and this pair from Sonia Kashuk did the job without being too spendy.

Here’s hoping I’m just overreacting. Stay tuned for further updates as events warrant…

Just a conventional girl

June 28, 2013 ~ Jamie ~ Leave a comment

For a while, I felt like every other person I spoke with wanted to know when I thought my hair would grow back. I must have answered that question a hundred times. Now I’ve got hair, so that standard question has disappeared. Lately, one question I’m starting to hear more frequently has to do with conventional medicine versus more un-conventional methods of treatment.

I should start with a disclaimer. I’m a scientist. So is my husband. He even did a post-doctoral fellowship with the FDA years ago. We have a pretty healthy respect for “big pharma” and the processes that regulate the development and vetting of drugs. I’ve always worried about herbal and other supplements. While I doubt that they will be as effective as conventional treatment, I don’t worry because I don’t think they couldn’t possibly work. More, I worry that they can work. And they’re not regulated with the same stringency as things that are classified as drugs. Plus, some people feel embarrassed about wanting to use them, or they think their doctor won’t approve of something non-traditional, and so don’t want to tell their doctors. That’s probably my biggest worry—some vitamin and herbal supplements can interact with other drugs, and an oncologist is the best judge of what could put your treatment, or your health, at risk.

I realize it’s easy for me to tout the conventional route. I mean, it worked for me, right? Not only did I make it to my surgery without any hint of remaining tumor, but the chemo didn’t really bother me all that much, either. Would my perspective be different if it hadn’t been so easy and effective? Maybe. I do remember buying a bottle of Evening Primrose Oil to help bring on labor as my due date approached when I was pregnant with Turner. Though I only bought it as the result of an unsolicited suggestion at an OB appointment. (And for the record, it didn’t work.) Desperate times call for desperate measures. I get that.

But still, I have to think that if something considered “non-traditional” was really that effective, the company that makes it would get it into trials so that it could be considered standard of care. That’s how they make money, after all. So for me, I think I’d stick with the traditional, regulated, vetted drugs. At least at first.

Farewell, Google Reader

June 25, 2013 ~ Jamie ~ Leave a comment

I’ve been a big fan of Google Reader for years. It has been a great way to keep track of all kinds of blogs– I didn’t have to check daily on all the blogs I enjoyed. Instead, I could scroll through Google Reader see what was new at each of my favorite blogs at a glance. I could read the full article there or quickly skip to the next article. Sadly, Google Reader will be no more as of July 1.

Other bloggers are taking note, and when Ashley mentioned she is using bloglovin‘, I quickly signed up. That was a simple decision, I love nearly every thing she does! It’s easy to transfer all your blogs from Google Reader, and it’s easy to add new blogs. But it only lets you see one picture and read a snippet of each post. To read the whole post, you have to click through to the blog, and let’s face it, that takes extra time. They send a daily digest email, not sure if that’s a plus or not. It’s a lovely format, but I wasn’t 100% sold.

So today, I saw that Leisl, another blogger I’m just crazy about, is using Feedly, and I thought it was worth looking into. Again, it quickly imported all my blogs from Google Reader, and I really love that it will let me choose if I want just a list of recent posts, a single picture with a little tease, or the full post. Um, full post, please. So far, I haven’t found it quite as easy to add new blogs, though it’s completely manageable, and I can’t find a way to search within my blogs. (It does look like that’s in their future plans, though.) But it does let me group my blogs so that if I can quickly scan my favorites if I don’t have time to look through the new posts on the roughly 150 blogs that I follow.

I’m sure that there a lot of great blog reader services out there, I’d love to know if you’ve found one you like better. But for now, I think I’m sticking with Feedly.

Sweater Weather

June 24, 2013 ~ Jamie ~ Leave a comment

Ok, I know that it’s finally officially summer, so not the normal time to write about sweater weather. But I was rather attached to this stack of cardigans a few months ago. In fact, after Christmas, I went out and bought three of four of these, along with a several tank tops to add to my stack, in the same trip. They were just that important.

Chemo does lots of things to a gal’s body. Not many people mention it, but one of the lovely side effects is chemically induced menopause. That’s right, ladies. Hot flashes. (And a few other undesirables…) But the hot flashes nearly drove me nuts. They started at night, and so I’d just take off the hat I slept in to keep my head warm and stick in in my windowsill. That way, when the hot flash had passed and I was cold again, I could reach for it and grab it in the dark. But managing them during the day got a little tricky. I have so many lovely bulky sweaters. They didn’t get much wear this winter. It was a lot of cardigans and blazers for me this winter so that I could shed a layer when I got hot. I’m sure a bald chick with a scarf on her head and a wearing a tank top with jeans looked totally normal in December.

My oncologist asked about the hot flashes, and I was reluctant to take any more meds, I thought I was managing fine. But when she asked how I was sleeping, I had to admit that between the hot flashes and whatever else was going on with me, it wasn’t great. She gave me something to take at bedtime that would control the hot flashes but might make me sleepy, and it made a HUGE difference. It’s not a drug without side effects, but it really didn’t bother me. By the time I finished chemo, I was taking a different medication in the morning to keep the daytime hot flashes at bay, and I could actually start wearing something other than the tank top/cardigan combination. I’m so thankful for the support meds that have been developed– there’s no reason to avoid them and be a martyr. Quality of life is so important, and they made a huge difference in mine. So worth it.

Before I had a great handle on them, I was at chemo and was fanning myself through yet another hot flash. The French girl mentioned that she was usually cold at chemo, she couldn’t believe that I was hot. I told her it was just a hot flash, that if she wasn’t having them, she probably would be soon, she was just a couple of cycles behind me. Apparently, she’d missed the part of chemo camp where they’d said to expect hot flashes. She was actually planning to call her landlord that afternoon because she thought her heater was broken– kicking on super high randomly through the night!

Warrior Spirit

June 14, 2013 ~ Jamie ~ Leave a comment

The day I had my head shaved, it was cool, so I wore this leather jacket. When I donned my soon to be favorite scarf, I realized that I had a bit of a bad-girl biker chick look going on. And I liked it! As soon as I put the scarf on, Sally and I knew that we’d need pictures of that look!

Upon seeing the pictures from that day, one friend commented that I looked like a warrior, ready to head into battle. I liked that analogy, and somehow “warrior” got attached to this photo in my mind, too. More than one friend who’s gone through breast cancer has commented that she never wanted to go out without her wig, fearing that she would look weak, sick. That people would pity her. I’m sure some people pitied me, but they never treated me like that. I told these friends that I always felt like it showed strength to put on a scarf, some good lipstick, and a smile. And now with more hair and little air of “sickness” to me, I think I’ve never looked stronger than in these pictures. (Many thanks again to Sally for capturing such lasting images of strength.)

Photography by Sally Brewer Photography

Lipstick: Dubbonet by MAC