Just want to share this NYTimes article, How Long Have I Got Left?, because it is so beautifully written and insightful. My favorite quote is:
“I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”
Last night I went to Teaism for Young Survival Coalition DC’s holiday party. There was a large group of women there, which was wonderful and sad at the same time. I sat across from a young woman who was diagnosed just 2 months ago and is now in the midst of chemo. She did not seem to be doing well emotionally – she was often unable to put her feelings into words and kept asking if she’d ever be back to her normal self.
I’m in such a different place right now than she is, but I definitely understood where she was coming from. That feeling of being thrown, violently and against your will, into a vortex of doctors, decisions, information, emotions, fears, anxieties, baldness, etc. – it can all feel unbearable and insurmountable at times.
I was at a loss for what to say with her to make her feel better, but another woman at the table said something I thought was really profound: “You will get through this. And, after you do, you’ll be sitting at this table comforting someone else.”
For me, I’m at the “sitting at the table comforting someone else” stage of my experience. But it’s humbling (and infuriating and sad) to know that at any moment, I could be thrown back into that vortex. And I think that’s why I enjoy staying in touch with groups like YSC, because I still need their support.
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.”
This is fantastic news. Dr. Domchek was my oncologist in Philadelphia, and she is a wonderful and renowned researcher in the BRCA field. I couldn’t be happier that my hometown is getting this research center. I hope to be able to participate in whatever research they have going on in the future (as a survivor, of course – I’m kind of done with the cancer patient thing and don’t plan to do it again).
While I’m not sure I really needed a guideline to tell me this, it’s great to know that the American Cancer Society has officially issued the recommendation that doctors talk to cancer survivors about maintaining a good diet and exercise because there is sufficient research to show that these actions help prevent recurrence.
You can read about it here (before you hop on that treadmill).
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?
MRI was all clear. Of course, after getting the good results, I felt a bit crazy for getting the test in the first place. But as my family said, I had a reason to be worried and at least now we’re certain that the worst-case scenario flying through my head was not true.
And thank goodness for that.
I am definitely going to search for a therapist. There’s just so much in my head right now that I need to get out, and I think a lot of my symptoms were probably caused by stress and anxiety and then getting stressed and anxious about my stress and anxiety. I need to learn to relax – step away from stressful situations – and most importantly, I need to learn the best way to live this post-cancer life.
We’re coming up on the one-year anniversary of my breast cancer diagnosis. I’m not exactly celebrating for a couple of reasons… the biggest being the nerve-wracking week that I’ve had.
Last Wednesday, I came home from work early because I was too dizzy to function. Best way I can explain it is vertigo – and it all started when I woke up. It was extremely troubling and my oncologist set me up with a general practitioner to see the next week, but by dinnertime I felt much better so I didn’t make the appointment.
The next day I felt fine and the next. But over the weekend I discovered a hard ridge-like area on my right breast and started freaking out all over again that the cancer had returned.
On Monday I was able to see my oncologist and she was not at all concerned, but she let me get an ultrasound for peace of mind. It all looked normal. Phew – one disaster averted.
Then Wednesday night again I had dizzy feelings – not as much vertigo as slight nausea, lightheadedness, coldness, and not feeling “normal”. This morning I woke up still feeling nauseous, which went away quickly, but I felt a lot of pressure in and around my head – migrating from behind my eyes to the back of my neck and, currently above my right ear.
I am totally confused about what is going on in my body, but I know I don’t feel right and I am worried and scared. My immediate thought, thank you breast cancer, is that I have a brain tumor. Such a drastic conclusion for what are probably benign and uncomplicated symptoms, but that’s what having cancer will do to you.
To relieve my fears (best case scenario), I am having an MRI tomorrow.
I should be happy – I’m going to get this checked out, find out it’s nothing to be worried about, and move on with my life. But I’m scared %&*@less and it’s making me feel like a crazy person. I had surgery to remove the cancer, which was stage 1. No lymph node involvement, no signs of spread anywhere. I had aggressive chemo. There is really no reason to believe that I have a tumor in my brain, other than these weird dizzy spells, which could be caused by a myriad of other minor disorders.
My doctor again says she isn’t terribly concerned – my symptoms aren’t consistent with what she’s seen in brain cancer patients. More like a low-grade viral infection. My dad agrees.
But I’m having the MRI anyway, despite the professional advice and my own fears. I keep having these visions (not literally, or I’d be even more concerned about a brain tumor) of sitting at my parent’s house tomorrow as I receive the news that I my MRI showed a brain tumor. It feels like last March all over again, just thinking about how drastically my life is going to change (AGAIN) if that happens. The weather woman on my TV drones on and on about cold fronts and all I can think is, “The whole world will melt away tomorrow if I find out that I have metastatic cancer.”
What is one supposed to do with that news? And how is one supposed to live a life where every “off” feeling leads to the unshakeable dread that cancer has returned or spread?
I guess we take it one day… one test… at a time. My ultrasound was fine. My MRI will most likely be fine. And once those are out of the way, maybe I can stop worrying, at least for the next three months.