It was February in Colorado, a cold and snowy month, when I last posted about my “Cancer Journey”. And, now, the sun is setting on this 5th of July. I spent the Holiday weekend being as physically busy as possible. Here I am with Ginger practicing our paddle board techniques. It’s been 10 weeks since my last chemotherapy infusion and in that time I’ve worked hard to get ready for the next phase of this thing called “my life”. Tomorrow I’m having a prophylactic double mastectomy with reconstruction. I’m doing this to reduce my chances of developing breast cancer from over 85% to less than 5% in the course of my lifetime.
Honestly, I wish I had some newly developed insights to share with you. I’d like to say that I’ve had these great epiphanies since I last wrote in February. No. Not really. Although it wasn’t my intention to go underground, I think I needed a break from this cancer thing. As I’ve moved farther away from chemotherapy and my hair is growing and my appetite has returned and I’ve gained my weight back and I’ve grown stronger, I don’t want to be associated with a disease that tried to kill me. I don’t want to look back. Yet, tomorrow’s surgery is all about preventing what could be. Tomorrow’s surgery is all about stopping what might happen in the future. I’m having a hard time wrapping my head around this one. I’m doing it because it’s the “right thing” to do for me. I’m doing it because that means I’m living my life as if I will not die of ovarian cancer any time soon so I better reduce my ridiculously high risk of developing breast cancer (I have the BRCA 1 gene). Even now, as I write, this whole thing seems surreal. Can this be really happening?
It’s happening. It’s yet another opportunity to make meaning of what often doesn’t make any sense. I’ll keep you posted.
This is my attempt at a “selfie”. I wanted to show my medical team how my port and sports bra and running result in chafed skin. During my last set of doctor’s appointments (blood draw, doc visit, chemo), I was reprimanded for allowing the skin around my port to be rubbed raw. The port could be exposed and if that happens they have to pull it, reinstall another one and no one wants that to happen. Bottom line? I was reminded that I’m not done with cancer. I feel like I’m stuck in this netherworld: one foot walks in the land of all things cancer while the other foot walks, jogs, runs in the world of all things bursting with life.
If all goes well during this next series of visits which includes a CT scan and I’m still No Evidence of Disease, I have four more infusions. I’m torn. While I’m so grateful that I’m receiving a drug that is keeping the cancer at bay, I also feel like I’m dragging a ball and chain around my ankle. I can’t wait to cut loose from this constant reminder that my last year wasn’t a dream but actually a nightmare come true.
So, does my attempt to live my life crammed with reminders that I’m alive make me an inspiration? I guess it does for some and I’m ok with that. But, just remember, I’m no different than anyone else. There’s nothing special about me. I’m digging deep to find the strength to live in the face of my circumstances. I’m not alone. Everyday there are millions of people around the world doing the same thing under worse circumstances. I look to them for my inspiration. And, maybe that’s what we do for each other. We are connected through our humanness. We are connected through our vulnerabilities and our strengths. No one is immune to pain and loss. We carry these experiences and they become our stories. But, also remember that we are the Authors of our Stories. We write the scripts. It’s not what happens to us that shapes who we are. It’s how we interpret what happens to us that defines who we become.
My story? Well, the plot is still unfolding. I don’t know how the story will end. But, I do know I’m rewriting the script everyday so no matter the circumstances it will end on a positive note.
It’s been quite the year. As 2014 comes to a close, I’ve decided to practice celebrating more of what I “can do” and focusing less on “what I can no longer do”. As I’m slowly regaining my physical strength and testing my new limits, I notice that I often say things like, “I used to be able to run six miles with ease.” Or, “I miss riding my bike.” And, “I miss feeling strong.” As a matter of fact, if you have been reading my blog, you, too, have noticed this theme. Yes, I mourn the loss of painless intercourse and normal bowel function. Yes, I’m tired of getting tired easily. I know these feelings are normal. I know I am grieving. And, I’m “over it”.
2015 is about celebrating life and being alive. This year is about what I CAN DO. And, it may not be what you think. I want 2015 to be less about accomplishments and more about gratefulness.
No more: I miss my long, thick, dark wavy hair.
More of: I have hair!
No more: I used to be strong evidenced by my lean body mass.
More of: I’m slowly regaining my strength.
No more: I miss getting my period, my cervix, my ovaries, my uterus, my breasts (to come off this summer). I miss feeling feminine.
More of: Feeling feminine is beyond my body. It’s what I make it.
No more: Looking forward to tomorrow.
More of: Live in the now.
No more: Feeling sad for myself.
More of: Feeling proud of myself.
Have I banished fear and sadness from my life? No. I just don’t want to live in it. And, I believe that ruminating about all of the loss of have experienced only reminds me of all of the loss I have experienced. So, here’s to 2015 whatever it may bring. Pretty sure I can handle it.
A year ago today, I was on my way to Denver for my “debulking” surgery for ovarian cancer. I was told the operation could take anywhere from four hours to eight hours. It took seven-plus hours. I was told I might wake up to a colostomy. I woke up to a drain protruding from my lower left belly region as a result of removing part of my colon. Yet, no colostomy. One year ago today, I was a surgery “virgin”. Today, I am a surgery veteran. One year ago today, the good people of the world were busily getting ready to celebrate the holiday season. One year ago today, I was fighting for my life.
It’s been the shortest, longest year of my life. At times, I still can’t believe this has and is happening to me. I’m quickly reminded as I step out of the shower and see the scar that runs from the tip of my pubic bone to the base of sternum. My reflection in the mirror does not lie. Not only does it reflect my scar, but it also highlights the port that sits just beneath my skin under my right clavicle. I don’t recognize the woman I see in the mirror staring back at me. Mirror, mirror on the wall, who’s the “bravest” one of all? Am I braver than I was a year ago? No. Not really. I’ve just gained much more experience suffering than most people. And, I used to think I knew what suffering was (think endurance running, adventure racing). Now, I look back on my “choice” to suffer through being an athlete and think of it as a privilege. I was blessed because I could. Now, I am blessed because I am alive.
I know what I have is “bad”. Odds are that this disease will take my life much sooner than later. When I let this thought wash over me, I’m not feeling brave. I’m feeling sad. My heart longs for more tomorrows. I want to swim in the sunlight, soak in the world’s wonder, breathe in life’s sweetness. But, mostly, I want to hug and be hugged (and, I’m not a hugger).Why? Is there not a better way to declare that I exist? That you exist? It’s a simple act. No words needed. Yet, so much communicated.
So, watch out. Next time you see me coming, arms extended, get ready for me to invade your personal space. Don’t be afraid. It doesn’t hurt. It heals. And, maybe, just maybe, hugging will add joy to our today but also bring us many more tomorrows.
Today marks exactly 11 months since I had the 7 hour debulking surgery to remove the ovarian cancer that had engulfed my abdominal cavity. Eleven months. Because I’m heading towards that one year anniversary, I have constant reminders flooding my senses about last year at this time. Anniversaries do that. We mark them, celebrate them, reflect upon them. I’ve been reflecting on the year that has passed and the life I have lived.
And, as much as I have grown to appreciate my life, I feel like I have have one foot in and one foot out, of life, that is. As soon as I could physically re-engage in the life I knew before cancer, I did and I did without abandon. And, here I am today, loving my work and my newfound wellness. And, I have a keen awareness that this may disappear in the blink of an eye. There are times when I find myself not wanting to feel “alive” again for fear that cancer will try to steal it away. I’m living with one foot in and one foot out.
Joy is sweet. Fear is bitter. Joy is energizing. Fear is paralyzing. Joy breeds optimism. Fear breeds pessimism. Joy embraces. Fear frightens. If we let it, fear will hijack our joy.
Funny, before my cancer diagnosis, I thought I was afraid to live. Now, I realize I’m not afraid to live. I’m afraid to lose all that I’ve come to love about my life. So, I choose to embrace joy. I’m going to take a big bite out of life and savor it’s sweetness for as long as I can….with both feet in.
It’s been almost 10 months since my debulking surgery and roughly 4 months since I finished frontline chemotherapy for my December diagnosis of Stage III Ovarian Cancer. I’ve been declared N.E.D. which means No Evidence of Disease. My hair is growing although I still don’t recognize myself when I look in the mirror. I’ve gained my weight back and then some. I’m exercising regularly though my stamina is 10% of what it was pre cancer treatment. I’m back to work full time. I’m appreciative beyond measure.
People say, “You look amazing!” And, “You’re ok, right?” I answer, “Thanks and yes.” And, yet, I feel like I’m hiding a dirty little secret. It started small and has grown over the past couple of months. I’m not “Ok”. At least not in the way people are asking. The “You’re Ok, right?” question is code for “The cancer is gone, right?”. As of now, the cancer is gone. That’s what No Evidence of Disease means. Love the qualifier. “As far as we can tell through our limitations of medical examination, we cannot detect any trace of the cancer.” That’s as good as it gets. This is where I get tripped up. This is as good as it gets in the world of cancer. It’s what every cancer patient wants to hear after completing treatment. I am happy. And, I am sad and scared and lonely and frustrated and confused and anxious and numb and….well, you get the idea. I’m all of these things. I’m definitely not ok.
So, what’s my definition of “ok”? That’s my million dollar question. To find my answer, I’ve embarked on a quest. Will I be ok if I face my fear of dying? I started with my local bookstore. “Death and Dying section please.”, I tell the friendly clerk. I follow her to the surprisingly small selection of books. Upon first glance I notice that most of the titles target comforting those who have lost a loved one. Hmmm, no market for those of us who are dying? Wait. Aren’t we all dying at some rate or another. Oh, yeah. Denial. Bummer. So, I buy the one book that I recognize, “How We Die” by Sherwin Nuland. It’s sitting on my nightstand, staring at me. Or am I staring at it?
I try to remind myself that I’m not “actively” dying just yet. “Focus on living”, I tell myself. Find women who have survived this diagnosis. I search the internet as I have done so many times before hoping that I find something new, something different. I feel like I’m mining for gold but in this case I’m mining for “hope”. I sift through pages and pages of personal blogs, ovarian cancer chat groups, and scientific journal articles. In my search for hope, I learned of another woman who died today of ovarian cancer. Her name was Leah. She was 38, married with two young sons. My heart sank. She had journaled about her experiences. I paused. Do I dare read her entries? I do. Was this what I was searching for? I’m not sure. But, it’s what I found and I’m ok with that.
I’ve been meaning to talk to you for a while now. I just needed some time to gather my thoughts. I think we are drifting apart and it might be time for us to take a break. Over this past month I’ve noticed that I don’t think of you as often as I used to and I don’t give you as much time and attention as I once had. Instead, I’m filling my days with work and play. And, as I make room for health in my life, there is less room for you in my life.
But before I say good-bye for now, there are some things I want to say. You taught me to appreciate the good and the bad and all that falls in between. You taught me to say “I love you” and “Thank you” more often and with more gusto. You taught me to hold my hugs a little longer. You taught me that I have nothing to complain about, that my life is blessed. You taught me that control is really an illusion. You taught me that I can trust others with my life. You taught me about being patient and being a patient. You taught me about loss. You taught me about love. You taught me to live, to live fully each and every day. And, for these lessons, I am grateful to have had you in my life. I will never forget you and the time we had together.
And, if we meet again, and odds are we may, I trust I will have the courage and the grace to face you. But for now, it’s time for me to say good-bye. I have a new boyfriend in my life. His name is NED (No Evidence of Disease).
How are you? No, really. How are you? Last year at this time, you were about to turn 47 and feeling on top of the world. You had made some big decisions; decided to sell your business that you had worked so hard to create and sell your house to move in with your boyfriend. This was a new chapter. A conscious decision to simplify your life, to carve out time to enjoy as well as look to the future for that next adventure.
Then, a few months later came the news that you had Stage III ovarian cancer. Talk about taking on that next adventure. I know, no one plans for a cancer diagnosis. And, what a crazy detour your life has taken. How are you? I can imagine that you sorting through all of the changes you have physically and psychologically endured as you come to understand your new reality, your new life. Scary at times. Sad at times. Hopeful at times. Appreciative all of the time.
I hope that you not only appreciate life but also appreciate you. Not only appreciate, but cherish who you are. Do you realize how far you have come? Here you are last week receiving chemo and off to exercise.
Stop for a moment and congratulate yourself for outwitting your demons. You do realize that you were born into this world an anxious soul. It’s not your fault. It’s no one’s fault. It just is. Remember this trip to the beach? You were just a little over three years old here and even then no smile on your face. You even look like you are bracing for some unknown threat. It’s as if you knew early on that the world was a scary place. It was better to not let your guard down.
And, as you grew so did your worry. I’m sure being first-born and feeling that need to be hyper-responsible didn’t help. As well as your Dad’s temper, your parents announcing their getting divorced a week before your 13th birthday, moving and changing schools, moving from a middle-class lifestyle into poverty and watching your mom struggle with alcohol throughout your high school tenure. I know you just wanted to be accepted, to be liked. I know you felt so alone and misunderstood. I know you found solace in being a “good student”and a “good girl”.
And still, the demons chased you. So, you worked harder. Went to college. Graduated the top of your class. Went to graduate school. Went to graduate school again. Yes, I know, you weren’t trying to prove anything to anyone else, except you. Remember when you decided to prove to yourself you were an “athlete”? You took up cycling. You started running. You did your first century. You completed your first marathon.
All of these “accomplishments” and your demons still chased you. So, you worked harder. You opened a business. You ran more marathons. You rode more centuries. And, then one day, that day you will never forget, you were told you had cancer. Your world stopped and your demons were staring straight at you. Remember? How awful. Remember when it was dawning on you what lay ahead – that huge surgery followed by intensive chemotherapy – you said, “I don’t think I can do this.” Remember when you woke up from surgery, lying in your hospital room and you called your Mom and told her that maybe you should let nature take its course? Remember when you were getting ready to start chemotherapy, only a few weeks out from surgery and in so much pain, you told you sister that you didn’t want to suffer anymore? Remember when you were four days out from your first cycle of chemotherapy, so terribly sick that you contemplated taking your own life because the thought of enduring five more cycles of this hell seemed unimaginable? Remember, over the course of these past seven months, when it felt like your body was betraying you, you would lay on the bathroom floor saying to yourself over and over again, “I am not my body. I am not my body.” Of course you remember. I know you will never forget these moments.
The thing is Leah, these moments have changed you in ways that you are just beginning to understand. Your demons? Funny – when you stop running, they stop chasing. That’s it, Leah. Stop running. You are still an anxious soul. And, you are so much more than that. You do not have to prove to yourself that you are worthy. Look at you. Look at what you have survived. Just be you. That’s all. That’s enough. Cherish it. All of it.
Someone once told me that the most commonly experienced side effect of cancer is living with the fear that it might come back. Yep. I have that side effect. I’ve joined the world of the living again (figure of speech). I’m going back to work (slowly). I’m seeing friends and colleagues that I haven’t seen since being diagnosed. I find myself telling my story, repeatedly. And, as I hear myself telling my story (repeatedly), I can’t quite believe it happened to me. And, as a matter of fact, I feel like I’m telling someone else’s story.
In my field (mental health), I”m using a defense mechanism called dissociation. I love defense mechanisms! Here’s a little mental health 101. Defense mechanisms are designed to protect us from feeling the depth of the emotional pain before we are really ready to feel it. You’ve heard of denial? Another helpful defense mechanism. Defense mechanisms become maladaptive when we rely upon them to shield us from our emotions never allowing ourselves to learn, grow and gain insight from our struggles.
Back to my story. Telling my story as if it were someone else’s story protects me from facing so many of my fears about my cancer diagnosis. When I’m in a fearful place I wonder:
did the surgeon successfully resect all of the cancer (even though she told me she did)?
was the chemotherapy really effective (even though I have all indicators that it was)?
will the cancer come back? (I have no idea and neither does the medical team).
what will I do if the cancer returns? (I’m really too afraid to think about this one).
All of these questions really boil down to my wondering…
how much longer do I have to live?
That’s the million dollar question. None of us know the answer to this one though we live as if we have a thousand tomorrows. That, too, is a defense mechanism and not entirely a maladaptive one. It can be paralyzing to live with the full awareness of our mortality. I speak this truth with first hand knowledge. So, I’m trying to balance time spent facing my fears with time spent forgetting that cancer was ever a part of my life.
Facing my fears means tapping into my bravery bank. My funds are running low about now as I’ve spent most of my bravery on getting through surgery and chemotherapy. And, I’m coming to realize that learning to live life after cancer takes a another type of bravery; one which I have no real life experience.
So, until I figure out how to live my life in the face of my death, I will practice being brave. In the meantime, if it looks like I’m in denial or dissociating, please don’t disturb me. I’m pretending to forget.