Tag Archives: GWU

Speaking at Survivor Luncheon

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.

Andrea Roane, anchor of a local TV news station and champion of breast cancer awareness in DC, and I.

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.”

Doctor, Doctor

I’ve seen a lot of healthcare professionals recently. That included:

  • my oncologist for my regular appointment (I see her every three months, and this was the second post-chemo check up),
  • a gynecologist for a well-woman exam,
  • a nutritionist for some diet advice,
  • and a general practitioner because, well, I guess I felt it was important to have a GP.

And next month I have a dentist appointment and an appointment with Medical Faculty Associate’s Survivor Clinic.

On one hand, I tell myself I need these appointments. I need a gyno. I need a GP. I need clinical advice from a nutritionist. But on the other hand, I wonder if it’s too much and I’m doing it as a subconscious way to ensure that the healthcare world doesn’t forget about me.

“Hey, I’m still here. I had cancer; it might be gone now, but I still need attention and to be close to those who can care for me if I need care.”

It’s also a bit confusing because sometimes I’m not sure what doctor can play what role in my care. For instance, does seeing my oncologist every three months substitute for seeing a GP every year? Is seeing a gynecologic-oncologist the same as seeing a gynecologist? And can someone please be my personal assistant to keep track of all this crap?

Where is a girl to find answers?

 

Survivor: My Video Story

As my dad pointed out to me the other day, when you Google my name, a whole new host of sites pop up. That’s partly thanks to this snazzy new video featuring, well, me, that was filmed by the good people at the George Washington University Medical Faculty Associates, where I have been receiving all of my cancer care.

Survivor : Cara Scharf from GW MFA on Vimeo.

A couple weeks back, the marketing department at MFA wanted to create a profile of a cancer patient, and my wonderful breast surgeon, Dr. Christine Teal, recommended me. I worked with Brandon Bray, a wonderful filmmaker, to put together the above video, which I think turned out beautifully. When I was approached to be profiled in video, my answer was of course, “YES!” Though it does give me pause to think that some people who don’t know what I’m going through might find this, that’s a small price to pay given the enormous desire I have to educate people and let other young women with breast cancer know they are not alone. It’s why I keep this blog and why I am proud of this video.

Please watch it and tell me what you think.

A very Cancer-y week

On Monday, I had a follow up appointment with my oncologist – the last chemo follow up. In all honesty, I feel pretty awesome already. My hands are a little bit itchy and my thumbs and feet are still tingly from the neuropathy, plus I’m still bald, but I feel great. Thrilled to be finished with chemo. Thankful that on this Wednesday night I’m not dreading another infusion that would have taken place tomorrow. No needle in my port, no taste of metallic saline in my mouth, no weekend of feeling tired and worn down and off. Just normalcy… well… as much normalcy as one can feel after being diagnosed with breast cancer and undergoing a summer o’ chemotherapy.

Did I mention that I was followed around by a camera crew at my follow up? No? Well, I was. Yep, the marketing people at GWU asked me if they could film a little profile about me for marketing purposes, to post on the website and play on TVs throughout the Medical Faculty Associates building. I’m okay with being the poster-child for young adult cancer, in fact, I’m flattered they asked me. As with the pictures Rina took of me, a video of this experience will be interesting to look back on. Plus, the videographer said if I’m interesting enough (if?) he may want to turn it into a full-blown documentary!

Which brings me to my next point: tonight I attended a screening of the movie 50/50 that was followed by a Q&A with actor Seth Rogan and writer Will Reiser. In the movie, Seth Rogan plays Kyle, friend of Adam (Joseph Gordon-Levitt) who is a 28 year-old diagnosed with a rare spinal tumor. The movie follows Adam from diagnosis through chemo to surgery, all the while exploring his relationships with Kyle, his girlfriend, his doctors, his parents, and his therapist. I thought the movie was wonderful – seamlessly weaving comedy with drama and showing a, for the most part, authentic young adult cancer experience.

Many scenes really hit home. When Adam hears the doctor say “your cancer” for the first time, everything seems to dissipate around him and the rest of the doctor’s words become jumbled. Many of his friends don’t know how to respond, and say the “wrong” things to him, as in “My uncle had cancer too… he died.”

(L to R) Doug Ullman, Livestrong CEO, Seth Rogan, and Will Reiser

The one thing I didn’t like about the movie was the moment when Adam’s doctor comes out after his surgery and tells the family “He is going to be okay.” One issue for a lot of young cancer survivors is the fear they carry for the rest of their lives of recurrence and new cancers. To wrap up the movie with such a simple statement makes everything seem black and white – like cure is extremely easy to achieve. Cure might be possible, in some sense, but young adult cancer survivors will never truly be “okay”. Cancer forever changes you. I realize they had to end the movie somehow and it didn’t bother me enough to negate the rest of the movie’s positive points, but I did need to comment on it.

Go see 50/50. It’s worth it. You’ll laugh and cry, even if you have no experience with cancer.

Tomorrow night I’m going to participate in a young adult cancer patient group at GWU, so it’s a cancer-filled week! I’m looking forward to a time in my life when I won’t have to say that.

 

My breast surgeon on GMA

Check this out – my breast surgeon, Dr. Christine Teal, was on GMA this morning talking to Robin Roberts about her prophylactic double mastectomy.

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt_2_65.swf

It was pretty cool to see the woman who operated on me go on TV and advocate for this procedure, as controversial as it is. Dr. Teal has a family history but no BRCA gene and no cancer herself, so some might find this a bit extreme. Still, it made me feel wonderful to know my surgeon was as adamant about eradicating her own chances of breast cancer as she was about mine, and seeing what she said about the strength of us breast cancer survivors made me tear up a little.

Go Dr. Teal!

Forever On Hold

Breast cancer is overwhelming. There are so many issues I’m thinking about right now:

  • Insurance.Yesterday I spent an agonizing amount of time on the phone with GWU hospital, my insurance company, and my
    Frustration.

    This isn't me, but I probably looked like this yesterday.

    oncologist’s office trying to get rid of a $1,000 bill for an MRI that should have been pre-certified. I realize this should be a minor worry in my life right now, especially because we got final path reports and I am THRILLED to have finally confirmed that my cancer was Stage I. But I can’t help feelings of anger that dealing with insurance companies is almost a full-time job and no one can give me straight answers to my questions.

  • Fertility (and insurance). I have decided to go ahead with embryo freezing, along with my boyfriend who I lovingly referred to the other day as my “frozen-baby daddy”. The decision was tough – this is a complicated process that requires a lot of doctor visits, drugs, injections, a minor operation, etc, but the decision feels good because it gives me the best probability of having my own children in the future. I didn’t want to go through chemo, become infertile, look back and say “Why the hell didn’t I freeze my eggs?” Still, the process is already causing me stress and it hasn’t even started. I couldn’t get a straight answer from my insurance company as to whether they cover retrieval and IVF, so I’m applying for financial aid from Sharing Hope for Women program. I also just went off my birth control last month as advised by my radiologist, and I’ve been spotting for the past two days, but as it’s been a bajillion years since I’ve had a period while not on birth control, I have no idea if this is a period or not. Why is it important? Because if it is my period, I gotta get a jump on this egg retrieval process ASAP. TOO FAST, TOO FURIOUS.
  • The skin on my breasts. There are spots on both my breasts that the plastic surgeon “doesn’t like”. I don’t like it either. One very large spot under my nipple on my left breast was turning black and is now a weird brown, and there was a big blister that popped to the right of it. My incision (which is along the bottom fold of my breast) is also iffy. I am terrified of getting necrosis and needing revision surgeries and, if worse comes to worst, losing my expander. On the right side, the problem isn’t as bad but there are some very small areas of imperfection. Come on, skin, pull through!
Does this swirling tornado of crap that comes along with a breast cancer
diagnosis ever die down? It doesn’t help that today is the first day in a long time that I’ve been alone. Both my parents, who have been amazing and taking care of me since my surgery, are working today. My boyfriend is back in DC, also working. And I am all by my lonesome, with my armageddon-worthy thoughts (well… and my JP drains, which feel like my new best buds). 

Back at home and it…

feels so good. By home, I mean I am at my parents’ house in Philadelphia for two weeks to recover in comfort before I have to return to DC for some follow ups. Thank goodness for teaching hospitals that have spring break – because my doctors will be off, it means I get some much needed time away from the hospital and I get to be in a big, light-filled house with my parents, who are wonderful cooks, instead of in my teeny little apartment in DC with an endless supply of frozen pizza. It’s the small things in life, I tell ya.

Today I am one week post mastectomy and I feel great. As I posted yesterday, the doctor relayed the verbal path report she got from the pathologist, which showed all negative sentinel nodes. They are still waiting for something called an IHC report, which, in rare cases, shows some cancerous cells and can cause them to go back over the other tests they’ve done more carefully, but the surgeon assured me this was only in rare cases. So, as I said, I feel great with all the news we’ve been receiving and with my recovery.

In case you want to see what hot post-mastectomy wear looks like, here’s a pic of me (no face included) wearing my compression bra with the post-mastectomy drains pinned to it. Don’t look if you’re squeamish – the drains are filled with red fluid and I’ve got bruises on my lower belly from the heparin (blood thinner) injections they did at the hospital.