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I’m Not Dead, Yet.

Musings from a three-time cancer survivor.

I know the end of my story. I will die. I just don’t know how or when. The science nerd in me believes I will most likely die of cancer. That’s the obvious answer. However, there was a time, not long ago when I let myself believe that I would live a life without cancer. Since originally being diagnosed in 2013 with ovarian cancer, I had not dared let myself indulge in the belief that I had a long life a head of me. This is a defense mechanism working at its finest. I had already let the floor drop out from me once and I wasn’t going to let that happen again. So, after I was diagnosed, it was easier to brace for bad than be hopeful for good. After my second cancer diagnosis, I double-downed. Especially after I was diagnosed with breast cancer AFTER receiving a preventive double mastectomy to reduce my risk of developing breast cancer from 80% to less than 2%. Imagining I had a long life ahead of me felt like I was torturing myself with grief.

This began to change when I noticed that not allowing myself to dream about growing old was more painful than the strong likelihood that I might not grow old. It was the summer of 2019. It started slowly. I dipped my toe in the pond of the future. For brief moments I indulged in the world of possibilities. It felt reckless. It felt wrong. How dare I imagine a life without cancer. Oh, but I was seduced by the thought. So, I let myself be seduced. Between May 13, 2019 and August 16, 2019 I lived as if I had 10,0000 tomorrows. It was like a weight was lifted off of my shoulders. I could breathe deeply. For the first time in 5 1/2 years (since the first diagnosis), I allowed myself to plan a future. Up until then, I lived in three month increments which is equivalent to the time between doctors’ appointments, blood draws and scans.

My husband and I started to talk about buying property in the mountains with the dream of building a house in which we would grow old together. We spent the summer of 2019 looking at properties. We found a parcel in our dream location. We put down earnest money. We went “under contract”. We started looking for architects. We researched home designs and building materials. It felt so good to be connecting on this dream that represented our future together. For the first time in six years, we put cancer in rear-view mirror. I couldn’t believe this was happening. Maybe, just maybe, I was going to live to see this dream come true.

On August 16, I went into my regularly scheduled oncology appointment giddy, hopeful and optimistic. I was feeling great. I couldn’t wait to tell my oncologist. Up until now, these appointments created massive anxiety. This time, for the first time, I made a concerted effort to not allow fear to steal my happiness. The protocol for these visits is to receive a blood draw to check tumor markers one hour before seeing the doctor (so the results are ready in time for the visit). On this day, the lab was backed up and I soon realized that my test results would not be ready in time for the office visit. So, I went into see the oncologist without that information. We chatted about how I was back to running 4 miles, three times a week and cycling mountain passes on the weekends. He performed the routine physical and declared I was doing great. He said, “I do not need to see you for one year”. Tears filled my eyes because I knew what that meant. He believed I was going to be ok. That in essence my risk for recurrence was low. I skipped down the hallway. I went to schedule my one-year follow up appointment. The scheduler told me with a huge smile on his face that his calendar was not open that far ahead. To not be able to book a follow up appointment because you are doing so well is like crossing the rainbow, finding the pot of gold, getting the golden ticket…I was free.

On the drive back home, the phone rang and I recognized the number. It was the cancer clinic. The first thing my doctor said was “I’m so sorry. Your tumor marker came back high.” I couldn’t believe what I was hearing. I think I stopped listening. I asked him to repeat himself. He said, “I will order a cat scan.” I hung up the phone. I was numb. I wanted to cry. I couldn’t. I wanted to scream. I could’t. I just sat there watching my hopes for the future dissolve with that phone call. For a brief moment, I beat myself up for allowing myself to dream about a cancer-free future. This is exactly what I was afraid was going to happen. I was back to grieving the life that I was not going to get the chance to live.

So, instead of celebrating the purchase of our dream property, my husband held my hand as I faced more blood draws, scans, biopsies and doctors’ appointments. The ovarian cancer recurred after almost six years in remission. I underwent fourteen hours of surgery combined with heated chemotherapy infused directly into my abdominal cavity while under anesthesia. I was in the hospital three weeks due to complications. It’s been eight weeks today. I’m finally coming up for air. I am no longer beating myself up for allowing myself to dream about a future without cancer. I now realize that those three months between May and August were not a dream. They were a gift. I lived fully and deeply without the fear of cancer. It was worth it.

My Breasts are Gone and It’s my Heart that Hurts

The sadness is suffocating. It didn’t start that way. I think it’s been creeping in like an approaching fog bank that was once off in the distance but now envelops my very being. It’s been eight weeks since I completed my year and a half treatment protocol for breast cancer. On last week’s calendar: blood work (tumor markers), cat scans and oncologist visit. Bracing for the worst and hoping for the best is my motto. At least that’s what I tell myself. But, if I’m honest, what I’m really thinking is that I’m tired of the life and death drama that has become my life’s plot over the past five years. I can’t tell you how many cat scans and blood draws and oncology visits I’ve had since this all began in 2013. No, really. I’ve lost track. I guess I thought with my veteran status that this might get easier. In reality, I think it’s getting harder. My sympathetic nervous system has been in overdrive and I’m feeling the side effects of this chronic “fight/flight/freeze” response.

The test results? No evidence of disease (NED). “Remission” has fallen out of favor. No Evidence of Disease is pretty much what it sounds like at face value. What I hear is “Hey, listen, we can’t detect any cancer with this current level of technology. It doesn’t mean it’s not there. It means we just can’t detect it.” You know, words of comfort. This is the world of the post-treatment cancer survivor. No wonder two-thirds of us have post-traumatic stress type symptoms: nightmares, flashbacks, and flooding (that’s when familiar smells, sights, sounds take us back to traumatic event). It’s exhausting. I’m exhausted.

I’m committed to embracing all that comes with being alive. Even this. I will sit with this sadness. I will sit with this fear. I will sit with this exhaustion. I will continue to view these challenges as opportunities to flex my emotional resiliency muscles. As much as I want to run away from this intensity for fear that it will swallow me whole, I will strive to stand still and let the waves of emotion ebb, flow, swirl and occasionally crash into my shores. This is my life: my sometimes “hot mess” of a life. But, it’s the only one I’ve got. I’m going to try to make it a good one.

I Wear Lipstick to Chemo


Ok, let me get you caught up. I last blogged about my tumor marker rising and concern that this meant my ovarian cancer returning. All those in “the know” believed this to be true. A PET scan revealed a single lymph node underneath my left clavicle deep below my chest wall. Well, that’s not what anyone was expecting. The plan quickly shifted from making a plan to treat recurrent ovarian cancer to biopsying this node. To everyone’s surprise it turned out to be triple negative breast cancer.  I started treatment on April 17th. The protocol includes 16 cycles of chemo over 20 weeks, followed by surgery, followed by radiation. With five weeks under my belt, I’ve committed to go through treatment with the biggest fake-it-til-you-make approach ever attempted.

I WEAR LIPSTICK TO CHEMO

Chemotherapy takes a toll on the body. I am grateful for the power and effectiveness of these medicines in killing cancer cells. Yet, there is a lot of collateral damage along the way. I will never forget how my body transformed from 125 lbs of fitness to 98 lbs of weakness. I hardly recognized myself: bald, pale, skinny. I avoided mirrors. This time around, I’m rocking the bald look. No hats or wigs to hide behind. I’m walking with confidence, head held high. Do I catch people staring? Yes and I love it. I’m drawing on my inner bad-ass (which I never knew I had). My motto? If I can’t wear big hair, I’m going to wear big earrings!

Ovarian and breast cancer has tried to rob me of what our culture traditionally defines as feminine. I no longer have a uterus, ovaries, fallopian tubes, cervix and breasts. Chemotherapy has taken my hair, my eyebrows and my eyelashes. Being stripped of these hallmark female features has forced me to get in touch with how I identify with being a woman. Cancer and cancer treatment have not taken my true sense of self. I will not stop believing that anything is possible, that people are inherently good, and that nature heals the soul. With nothing to hide behind, it’s become more clear than ever that female beauty is an inside job. I’m grateful to have truly learned this lesson. 

And, I’m going to continue to wear lipstick to chemo.

Run the Mile You’re In: Living in Spite of Cancer

Looks like I have cancer, again. My response?  Training for a half-marathon. I’m shooting for the Steamboat Half-Marathon which is June 4th. I’m well aware that I’m setting the bar high given the fact a PET Scan revealed that I have a suspicious lymph node near my left clavicle. My consult with a breast surgeon to explore removing it is not until March 28th. The surgery will follow. Chemo? Radiation? Probably on the horizon. Just not sure of the timing of treatment. In the meantime, I will run because running reminds me that I’m alive.

Today’s Post-Run Photo: 6 Miles and Happily Sweaty

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Sweating, breathing hard, and burning muscles are all a tribute to the wonders of the human body. I lost sight of this during my first go around with cancer. The treatment left me weak and incapable of exercise. For the first time in my life, I felt like my body was dying. From the moment I finished that last round of chemotherapy, I committed to reclaim my health. It’s been a long and slow process and worth every challenging step along the way. As a matter of fact, I’m so fortunate to be able to “suffer” through exercise.  I get to do this. Three years ago, it wasn’t an option.

Before cancer, I trained for events keeping my eye on the prize: the finish line. After cancer, I train for the sake of training, knowing that I may not get to the finish line. It’s about the journey, right? Damn right. A client of mine shared a story of a recent half-marathon she completed. While she was in mile three of the 13.1 mile course, she noticed someone holding a sign. It stated “Run the Mile You’re In”. We both commented on the perfect poignance of that statement. I’ve adopted it as my life mantra. “Run the Mile You’re In”.

So, for the next few weeks, I will be documenting my weekly long runs and my parallel cancer process. I may have cancer, but cancer doesn’t have me.

To Give Thanks

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It’s the day after Thanksgiving. I haven’t posted in this blog since my dog, Ginger, was being worked up for a deadly cancer, hemangiosarcoma. I wrote about my deep love for her and my not wanting to “let go”. I’m happy to report the tumor in her spleen was benign! We came out of this game of Russian Roulette with only a scare. I am beyond thankful.

I haven’t written about anything cancer for the past six month because my cancer has been in remission. I’ve been busy living. Since my diagnosis and year and a half of treatment, I’ve gained back my 25 pounds, my hair is shoulder-length, I’ve ridden my bike up Independence Pass and Deadhorse Point. I’ve cycled the Tour of Moon, the Tour de Steamboat and the Moab Skinny Tire Festival. I recently started training for a half-marathon. I dove back into work headfirst. I love being a therapist and teacher and a volunteer. After being diagnosed with advanced ovarian cancer almost three years ago, I realized how much I love being alive. In fact, you could say I have a love affair with being alive.

I had my three-month follow-up visit recently. My tumor marker is rising. The most likely explanation is that my cancer is recurring. There is a small chance it is not. I go back for another check up in 3 weeks. I’m crushed. The thought of letting go of my love affair with being alive weighs heavy on my heart. Every day has been Thanksgiving since the day I was diagnosed with cancer. I am thankful for mornings and Mondays. I am thankful for windy days and snowy walks. I am most thankful for life’s surprises. Life is beautifully unpredictable. I will miss this the most.

I don’t know what’s around the next corner. I try not to anticipate what I do not yet know. In the meantime. I am thankful for you.

Why I am a Lover, Not a Fighter

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I woke up to the news that David Bowie has died. Like many, I am shocked and deeply saddened.It’s reported that he died “after an 18 month battle with cancer.” There’s that War metaphor again. What other illness do we apply this analogy? It’s rare to hear that someone is battling heart disease or diabetes or alzheimer’s. I believe this metaphor started when President Nixon declared the War on Cancer in 1971.

When it comes to cancer, I am a Lover not a Fighter. Don’t get me wrong. I want nothing more than a cure for all cancers. It’s just that I don’t like what the battle analogy implies for those of us diagnosed with the disease. If I die from cancer, have I lost the fight? Maybe  I am as sore loser. Maybe not. Maybe I just don’t like fighting. It’s exhausting. I’d rather focus on living and loving life.

I’ll keep this blog entry short today. David Bowie and all those who have passed after being diagnosed with cancer are on my mind. You have not lost the fight. You are still alive in my heart.

With Love,

Leah

Two Years Ago Today

4 months post surgery
4 months post surgery scar.

Two years ago today, I endured a 7 plus hour long surgery to remove ovarian cancer. At that time, I had no idea the extent to which it had engulfed by innards. I still have the scar, though two years later, it has faded with the passage of time. I spent Christmas in the hospital. So, this time of year brings up a flood of emotions and not all bad. While I am beyond grateful to have survived the surgery and 16 months of chemotherapy, I also struggle with post-traumatic stress disorder (aka PTSD). The shorter days, the colder temperatures, the falling snow, the Christmas carols all remind me of what happened two years ago. I have nightmares and anxiety. I deal with what seems like a perpetual state of bracing myself for being attacked: literally, figuratively and metaphorically. I know this is normal. I am Emotionally scarred.

I am not alone in sharing this experience. Ask anyone who has experienced cancer. To some extent, they too, have emotional scars. Scars are a permanent reminder of what we have experienced: a sort of Life’s Record. The scars we can see have stories to tell. And, so do the scars we cannot see. I worry that our internal scars, by their very nature, are ignored. Because we cannot see them, we deny their very existence.

I must admit that lately I have been trying to ignore what I have been through. It’s anniversaries, like today, that remind me. Today is a day that I could have only hoped for two years ago. I am alive. And, more than just alive, I am healing from the inside out. The emotional wounds take more tender loving care to heal.The process cannot be rushed.

I practice patience and loving kindness towards myself and others during these difficult moments. And, mostly, I forgive myself for thinking that it shouldn’t hurt this much. Sitting with pain is something I don’t seek. I seek the courage to sit with pain and to honor my invisible emotional scars.

Look for the Unexpected

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During my “Ginger Walk” this morning, I noticed. That’s all. I noticed. I’ve been practicing the act of noticing. Another way to say this is “Living in the Moment”. I move in and out of paying attention. Having gone through cancer treatment and a forced slowing down, I’ve gotten much better at doing this although it’s interesting how quickly I forget. So, this morning I walked with this intention and this is what I found.

I found an unexpected connection. I first saw the dog, then it’s human. I asked Ginger to “sit stay”. He called out to me, “he’s friendly!” so I told Ginger to “go say hi”. Ginger liked him right away. While the dogs were getting to know each other in the way that dogs do, we humans got to know each other. He proudly shared with me his dog’s story; how Dusty got his name, that he is a wolf hybrid, and that he is a certified service dog (he opened his wallet and flashed Dusty’s ID). Dusty is trained to warn him if his blood glucose is falling as he is a diabetic. He has a serious heart condition. He survived bypass surgery. He smiled as he spoke. He pointed out the beauty of the cottonwood seedlings taking root and the tall, lush grasses lining the river and the pond. He said he hopes to make it 63 as his father and uncles had died by that age. He said he walks four to five miles on the days he feels good and two miles on the days he doesn’t feel so good. He called his walks “taking my medicine”. He was clearly grateful. Ginger and Dusty sat quietly at our feet. I noticed how grateful I felt. This man’s appreciation was contagious. He turned to Dusty, “ready to go?”. And, we parted. As I continued my walk with Ginger, I thought about our interaction. It couldn’t have lasted more than five minutes. And, yet, in that short amount of time, we connected. Why? He offered and I allowed it. He could have not stopped. I could have walked by, head down and closed off. Instead, I noticed.

Once again, I was reminded that being open and staying open to whatever the moment may bring more often than not brings unexpected joy.

So, look for the unexpected today. I’m glad I did.

The Other Side

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No. This is not me four days post double mastectomy/reconstruction. This is me on June 1, 2015 finishing my first bike ride since being diagnosed with cancer on December 16, 2013. I’m sharing this for it’s ironical factor. I’ve owned this jersey (with matching vest and arm warmers) for years having no idea that I carry the BRCA 1 gene putting me at high risk for both ovarian and breast cancer. Life is funny and ironical.

I’m on the other side of the boob removal surgery. Not going to show you that photo. My plastic surgeon called this morning to check on my recovery. He reminded me to be patient and that I’m “under construction”. Yep. True. Good news. The pathology report from the breast tissue showed no signs of cancer. So, I’m probably not going to get breast cancer in my lifetime. Whew.

I’m sidelined again. Meaning, my once very active lifestyle has come to a screeching halt. At least for a little while. I’m learning to be patient. I’m learning to live in this moment and appreciate what it offers me. As a psychotherapist (aka “shrink”), I speak to this point so very often. And, yet, before cancer and the surgeries and the chemotherapy, I was truly giving lip service to my clients. Ok, maybe not all of the time. Some of the time I was living in the pure joy of the moment. Mostly when I found myself in nature. Now? Well, this is different. These are moments I had not anticipated. These are moments I had feared. Living in a moment that is fearful is …..well, let’s just say it’s hard. I have some work to do. Practice, that is. Practice.

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