I love how this segment turned out – it is not just my breast cancer story, but also a story of how music can heal. Thanks to Andrea Roane, of 9News, for letting me share my story and for all that she does in the DC community to raise awareness about breast cancer.
This month, I had the privilege of participating in the George Washington Breast Care Center Survivor Luncheon. It was a beautiful event celebrating the patients from the Breast Care Center – with great company, great remarks, and last, but not least, great food. I was honored to be asked by my surgeon, Dr. Christine Teal, to sing, but I also said a few words about my experience.
Here are my remarks, here’s a video of me singing! Sorry for the tilted-ness and sound quality. My dad took it from his cell phone.
“Hello. I am so honored to be participating in the program today. I was diagnosed with breast cancer in March of 2011 and, though I’ve been out of treatment and surgeries for almost a year, I am still trying to find out what being a survivor means. I still feel fear and sadness on a regular basis, as I’m sure many of you can relate to, and that makes calling myself a survivor difficult.
During last year’s luncheon, they played a video profiling my story and featuring the wonderful people at the Breast Care Center. I was so grateful to be able to share my story, and I hope that people found it powerful. The video described that my cancer was genetic, from the BRCA 1 gene mutation passed down to me by my mother, who unfortunately passed away from the disease when I was just 3 years old.
For me, the most moving part of watching my video at last year’s luncheon was seeing my mother on the screen. She could have never known that her story would be broadcast to so many people she didn’t know, but people she had something in common with. And that really made me feel like the video was not just about me, but also about her. It was a way to tell a story that she never got the chance to tell.
I relate that experience to a similar experience I had in September. I was lucky enough to go on a trip with First Descents, an organization that takes brings young cancer patients and survivors on week-long adventure trips. I was rock climbing in the beautiful Colorado Rockies, and on our last night, we had a ceremony where we all floated a candle on a small pond to honor those who weren’t able to be with us. I, of course, thought about my mother, and I found myself thinking that I was on the trip both for myself and for her—because she never had the chance to be a young survivor and go rock climbing in Colorado.
I see a theme emerging in both of these examples. There are so many people who were not given the chance to survive, and that makes it so much more important that us survivors live each day like it is precious. We’re here to celebrate surviving, and I don’t think we can do that without remembering those that we’ve lost, and being grateful each day that we have the opportunity to continue experiencing all the beauty, joy, and even hardship that life brings us.
As much as I like philosophizing, I’m actually here to sing. I’ve been singing my whole life. As a child, I’m sure much to my parents’ chagrin, I belted out Disney tunes at any given opportunity. Much to my boyfriend’s chagrin, things haven’t changed much. During treatment, singing and listening to music provided a great tool for channeling my sadness and cheering me up.
I’ll be singing, “You Walk with Me,” from the musical The Full Monty. One of the characters in the show sings it at his mother’s funeral, so of course I think it is a fitting tribute to my own mother and to anyone who couldn’t be with us today, but who we still keep close to us to remind us that we have been given a gift that not everyone receives.”
I’ll admit I don’t understand this article. Also, I didn’t read all of it. Coincidentally, I also stopped in the middle of reading the author’s (Siddhartha Mukherjee) book, The Emperor of all Maladies.
I stopped for two reasons: 1) I was bored and 2) it scared the crap out of me, because most of the examples in his story were people who were treated and then had recurrences that killed them. Originally, I thought it would be interesting to read a history of cancer. The first couple chapters were really interesting (did you know that one of the first recorded cases of breast cancer came from an ancient Egyptian papyrus, or that mustard gas played a large role in the development of chemotherapy as we know it?), but then it got really scientific and I was less able to follow. It also really brought me down to read story after story of failed courses of treatment. Not what I needed after finishing my own, seemingly “successful” treatment.
Needless to say, I am now reading mindless fiction (Neil Gaiman’s American Gods). I just thought it was important to mention Mukherjee’s article and book, because for doctors, scientists, or others who really want to read about why cancer treatment is where it is today, it’s probably a worthwhile read.
This weekend, the boy and I went to the National Book Festival, a delightful celebration of literature that brings authors of all genres to the National Mall to talk about their work. The biggest draw for me was Toni Morrison, but I stuck around to listen to Hoda Kotb after seeing that she recently wrote a book about her career and her battle with breast cancer.
Many celebrities have had breast cancer: Melissa Etheredge, Edie Falco, Christina Applegate, etc. Not many talk freely about the experience, which I guess I understand because they’re in the public eye and not everyone wants to hear all the gory details about surgery and chemo and that good stuff. But still, I wish a celebrity would take us through the details, to prove that person is real and has a real breast cancer experience. Hoda didn’t do that – her story was very much about “fighting” and making it through and being a survivor – you know, the sugar-coated version of breast cancer. Still, I think it’s important that she shared the story at all, so here’s what I videotaped on my iPhone for you all. (Hopefully, this isn’t illegal, but I guess if I post a mug shot in a couple of weeks, we’ll know!)
I want to add two things that Hoda said that I found very profound. For one, she shared a story about a man on a plane who, after she was reluctant to tell him she had breast cancer, told her, “Don’t hog your journey. It’s not just for you.” That’s why I keep this blog!
She also said that, though after surviving breast cancer many women feel they need to do something huge with their lives, it’s important to realize that making small changes every day also makes a big difference. I liked that. Maybe I don’t have to run a marathon or start a non-profit or change someone’s life, but I can make small changes every day that will make my life better after breast cancer.
Sometimes I don’t feel like writing about my breast cancer. Today is one of those days, so I’m just going to share two articles I read recently. Sure, they’re from Yahoo, but I think they’re still legit.
On the suggestion of my oncologist and the fact that the medical world is unsure of the effects of chemotherapy on fertility, I visited a fertility specialist in Philadelphia. She gave me a lot (A LOT) of information to think about.
So, first off, no one is really sure what the chances are that chemotherapy will cause infertility. A good number (90%) of young women who undergo chemo get back their periods, but having a period doesn’t mean being fertile. Of course, there are several women who do have their own children naturally after chemotherapy, but of course you always have to worry about passing on the BRCA mutation to your child and what that means.
So what’s a woman to do? Freeze her embryos. Freeze her eggs. Use a surrogate egg. Adopt (though, apparently, having a cancer diagnosis in your past makes adopting more difficult, which I did not know before today). The whole process of freezing embryos is extremely involved. I would have to be on medication, inject myself with Lupron, visit a doctor almost daily, and then be put to sleep for a minimally-invasive harvesting session. It is all very expensive, too, costing upwards of $8,000 and even more on top of that to store the frozen embryos until I need or want to use them.
Needless to say, this is a lot to think about. Not only am I just a week out from a double mastectomy and freaking out about getting necrosis on my boobs that could cause me to lose skin, now I have to think about paying a ton of money to harvest my own eggs and deal with the possibility that I may never be able to have children on my own. In the words of the brilliant (not) Rebecca Black, “Fun, fun, fun, FUN!” Oh and to add another dimension to this, I have to look to the near future when I’ll most likely have my ovaries removed, so there is a very small window in which I have to get pregnant and have my kids. No pressure, right?
This all needs to sink in for a couple of days before I make a decision, though, as with all decisions I’ve made in the past couple weeks, I feel totally rushed. If I want to do this I have to get on it now, to ensure everything can take place before I start any chemotherapy.
Gah. Throughout the past week I’ve been so happy and upbeat – surgery went well, nodes are negative, I’m comfortable at home with my parents – and all of a sudden I’m again having these feelings of “Why me? I’m way too young to have to deal with this.”
My bilateral mastectomy was on Tuesday afternoon – but before I say anything about that, I just want to thank all of the wonderful people who reached out to me and expressed support on my blog. Though I don’t know you personally, it is amazing to know so many people care about me, understand my situation and my decisions, and are sending thoughts, prayers, and positivity my way.
And now – I am recovering from surgery. One reason I ultimately chose to have my surgery in DC with the surgeons Dr. Teal and Dr. Lenert from GWU is because they could fit me in so quickly. I was diagnosed on March 21st, and today, on April 8th, I am already three days out from surgery. Wow.
I am feeling good, too, and so so happy with my surgeons and team and all of the nurses and techs who took such wonderful care of me at the hospital. I was definitely anxious leading up to the surgery, but things were happening so fast and I decided to continue to work, so my mind was distracted. On Tuesday morning, I was definitely filled with trepidation. In the morning I had an injection of radioactive material into my right breast to locate my lymph nodes, and it hurt pretty bad. There were three very small needles that the doctor inserted under my skin around my nipple, and what stung was the actual stuff that they injected. Not pleasant, but it was pretty cool when the tech showed me the picture of how my lymph nodes lit up.
From there I was taken up to the pre-op ward, where I had to undress, answer a lot of questions, and meet with my surgeons and the anesthesiologist. The anesthesiologist asked if I wanted some “happy meds” to take my anxiety away, and boy did I! Once that started in my IV, I felt a bit lightheaded and then… blackout. I remember nothing until I woke up on my back and a guy next to me (a nurse? Surgeon? Who knows!) said, “You’re done!”
I hung out in post-op for a while with a wonderful nurse named Amelia, and my family came to visit. My brother, stepmom, dad, and boyfriend were there and it was great to be with all of them – and be on pain meds which allowed me to be happy about the whole situation.
The first thing I wanted to know out of surgery was the diagnosis on my lymph nodes. Luckily, the breast surgeon said the preliminary reports indicated they were clear of cancer. I was THRILLED to hear that, though we’re still waiting on a final pathology report. Also, I though “sentinel lymph node” meant only one, but apparently I had 8 sentinel lymph nodes and they took out all of them. Interesting.
I spent two nights in the hospital with very little sleep – a) I cannot sleep on my back and b) people are constantly coming in and out to check on me, administer antibiotics and anti-clotting medication, and give me pain meds.
And now I am in a hotel room with my parents continuing my recovery. I do feel a lot of tightness and soreness in my chest and I’m a little afraid to look at my boobs because they are so different and bruised, but other than that I feel very positive and good.
I hope that I will be able to blog throughout this situation, not just because it’s therapeutic for me, but because I want women to be able to hear what this is like.
The results from my biopsies are in. They have been in for a while, actually, but the last time I tried to share my results on WordPress, I got an error message. Figures. Apparently WordPress does not want me to share the following with the world, but I am doing it anyway:
I have cancer.
My biopsy returned news of malignancy in my right breast, and the ultrasound shows a tumor around 2cm in size. The cancer is also invasive, meaning it has broken from the duct where it started. Invasive ductal carcinoma. Has a night ring to it, no? The radiologist started one of her sentences with “Your cancer…”. My cancer. What the hell?
This was not supposed to happen. I am only 25 years old. I was supposed to learn I had some fat lobules or whatever it was that people my age have. Not breast cancer. But I couldn’t be that lucky.
I found this out on Monday the 21st of March, and in the week and a half since I’ve known, I’ve basically gone through all of the stages of grief. I have been angry at my body for betraying me in this way. I have been terrified and pondering my own mortality. I have been depressed, feeling like I have nothing to look forward to in life anymore. I have felt guilty, like there was more I could have done to prevent this, and that I’m letting down my family who already had to deal with my mother’s breast cancer, which ended up with her dying when I was merely 3 years old.
Today, I’m actually feeling okay. My decisions have been made and my course is planned – as much as it can be for now. I will have a double mastectomy and reconstruction with implants. Between the mastectomy and implants, while I am being expanded, I will go through chemo. It is weird to type this like it’s no big deal, and I would love to share my thought processes, but I’m not trying to write a novel here.
What I can say is that my mind is made up and I am at peace with it. I honestly hardly even entertained the idea of a lumpectomy or unilateral mastectomy. I just knew in my heart that this is what I wanted – I. Do. Not. Ever. Want. To. Have. Cancer. Again. It’s that simple. With this gene my chances of a second cancer are nearly 65%. To that statistic I say, “Screw you.” It just makes sense for me to prevent this from ever happening again.
When I first got the results that I was BRCA 1+ positive, I thought mastectomy was crazy and drastic. But I am no longer a previvor. I am now a cancer patient, and if all goes well, I will be a cancer survivor. I’d like to keep it that way for a long time.
I guess this means a lot for my blog – it’s no longer just about wearing my BRCA genes, it’s now also about being a 25-year-old with breast cancer. Whoop-dee-doo.
I promised a blow-by-blow of my core biopsies, but I don’t want this post to be a bajillion paragraphs long, so I’m going to post a good video I found on YouTube that describes the process of an MRI-guided core biopsy. Of course, it’s all very clean-looking and calm and bright, making it seem like getting a core-biopsy in an MRI machine is akin to getting ice cream with your family. It’s not. But the process is explained well so you know what to expect.
A recommendation for those of you preparing for this procedure: do NOT pore over internet message boards trying to figure out if it will hurt. It is not terribly painful, and I think the women who complain that it is painful must have had really insensitive radiologists. Which brings me to another recommendation – talk to your radiologist beforehand about your pain tolerance and tell him or her that you want them to test the anesthetic to make sure you don’t feel anything.
My radiologist was WONDERFUL and did this for me. Basically, before they put the needle in, they inject your boob with local anesthesia to numb you. My radiologist injected it, and then spend some time inserting the needle slowly and asking me to tell her if I felt pain. The second I did, she stopped and gave me more and deeper anesthesia. It went on like this until I couldn’t feel anything, and from there the procedure was totally painless. Pressure, yes; sharp pain, no. If you feel sharp pain, the anesthesia is not working or deep enough. Speak up. I have to say that I hardly felt the anesthesia needle at all. Really.
On the same day, I had an ultrasound-guided core biopsy and it was very similar except that I was on my back and not in an MRI machine. The worst part really was the anxiety and the moments when the radiologist tested the anesthesia and it wasn’t quite working. But it was a very brief sharp pain at that point, and immediately when I indicated I felt it, she stopped.
All in all, not as bad as I expected.
And now, I’m waiting for my results, which I’ll hopefully get tomorrow.
Last night, I felt deeply depressed thinking about getting my results. I almost want to convince myself that I have cancer just to lessen the blow if it is actually true. My mind conjures up images of sitting in the doctor’s office, hearing “We found cancerous tissue from your biopsy” and me just breaking down into tears. How can that statement NOT change your life completely? My boyfriend was trying to talk to me last night about some plans we have next weekend, and in my head I was thinking “Plans next weekend? Don’t you realize that if I found out I have cancer on Monday, all future plans are going to be put on pause?” I might have freaking CANCER. This isn’t like finding out if I have a urinary tract infection. This is CANCER. This is serious.
The best I can do at this point is wait. But I am absolutely terrified for tomorrow and as I go through this, I wonder why I don’t just have surgery right now to minimize my risk and my need to ever go through this in the future.