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Celebrating Imagination and the Wonderful, Wild Ride that is Life

Friday, June 15, 2018

The Hardest Thing I've Ever Done

I never admit defeat.

But I need to be honest...I'm struggling.

I am struggling with who I am. Who I am NOW.

I've lived almost 20 years as a breast cancer patient, survivor, and activist. I have thrived on my own inherent belief that cancer didn't know who it was dealing with. I fought hard. And not only did it seem like I had succeeded, but I made sure I exceeded even my expectations.

I'm just going to say it here. I'm going to KEEP. IT. REAL. Being a young person going through this experience is an entirely different deal. Your life is ahead of you. Your dreams are unattained. You've really only been test driving life at this point. You are still making mistakes. Real life, long life, is something in the future. And you sure as hell don't fully know who you are.

I have reinvented myself many times in my life. For many, it's the reinvention of getting married, starting a career, and becoming a parent. And all of those experiences are definitely ones I cherished. They each had times of difficulty in their own way...becoming a parent is freaking hard. And it changes you in so many ways. And in my case it changed me in every way that is good.

But because of cancer I have reinvented myself more times than I could count.

There's being the cancer patient....newly diagnosed, with a very scary diagnosis at that, and seeing yourself through the eyes of others like the caregivers who see you as a challenge, the strangers and even family and friends who see you as a reminder of what they are most afraid of, and then there are your loved ones who see you as someone suffering, someone delivered a tragedy that seems imperceptable, unfair, and one with terrifying consequences. You're bald. You're sick. You're tired. And frankly, people stare at you. Or, in my case, actually say things like "You are my worst nightmare."

So that was my first invention. Call it Cancer Girl 1.0. I ignored the stares. I took the stupid and hurtful comments and used them as fuel. I didn't take to my bed. I kept working. I kept exercising. I made jokes. I always make jokes. I kept everything as light as possible. I had young children, so I shielded them from being scared as much as I could. I took my medicine and said, "Thank you, and may I please have another?" I remember a very telling conversation with one of my sisters after I was first diagnosed. I had just finished a chemo treatment and we were out walking. Speed walking. And my sister said, "I'm not worried, Lanie. Because I know you will fight. You are a Campbell girl." (Campbell is my maiden name.) I knew she was right. I let the Campbell girl come out and take the hits and keep on fighting. Don't get me wrong. I was happy to have that fight in me. I was thrilled that when I took up running again I visualized squashing cancer cells with each step I took. Somewhere in that time my sweet husband made an animated character of me called "SuperPea" (he calls me SweetPea)..I was a bald superhero with a cape and a take no prisoners attitude. I loved it.

And it all worked! I went through all of the physical torment and treatments and radiation and I survived! In fact, I thrived. I became a different person somehow. One who would speak her mind. And I became someone who was determined to stop what had happened to me from happening to anyone else.

Until it happened again. Just three years after all my kicking ass and taking names, my cancer came back. This time it hadn't spread anywhere distant in my body, but it had shown that it WAS. NOT. GONE. I did't receive aymore chemo or radiation, but I did have a total hysterectomy at 34. And let me tell you, life without hormones is not as fun as it's cracked up to be, not to mention that any thoughts of more kids were gone. Goodbye sex life! Hello menopause! Hello Cancer Girl 2.0!

I admit this was a blow. I had a hard time accepting that my prior Superpea efforts had not crushed the cancer like I'd hoped. So this time I doubled down on all my efforts. I buried the fear, relished in the realization that "other than cancer you're incredibly healthy", turned up my positivity dial to 11, brushed off my SuperPea outfit and started kicking cancer's ass like a goddamn Campbell Girl! It was then that I upped my running game, and exercise in general. Many days I would run nine miles and go to my Fit Ball class from hell and work on building muscle. On the same day! I dropped so much weight that I looked like a little kid. Eventually my body started revolting. My knees and ankles protested to the point that I couldn't walk afterwards. But I kept at it. Because I was fighting my body and I was not going to let it win. I know now that what I was doing was showing my body who is boss. I was done with it trying to kill me. I was taking control the only way I knew how.

Shortly after Cancer Girl 2.0 took over, she was replaced by Cancer Girl 3.0. In addition to throwing myself into controlling my body, I became a breast cancer advocate working for a non-profit focused on young women with breast cancer. I started as a volunteer, but I knew from the get go that the work that needed to be done was something that propelled me. I eventually made it my full time job. I lterally dove deep into cancer. I surrounded myself with it. I used to joke that cancer and I shared an office. I spoke daily with newly diagnosed young women. I ran support groups. I created educational programs. I raised money. I provided resources. And many times while talking to other young women, I would be struck by the realization that I was the one with the worst prognosis in the room. But still, I watched my friends, young women who were every bit as tough and kick ass as me, die. And it propelled me to keep fighting. Until I was working on average 70 hours per week....

Until I wasn't. Because the company decided to reorganize and jobs like mine were not in the final plan. Over what felt like was a matter of days or weeks all the years of work that I had put in was gone. Of course they offered me a job on the national level, but I had been helping women on the ground in the throes of their fight. And I couldn't see that work disappear while I went on to work that to me seemed too distant and futile to effect real change.

The wheels came off Cancer Girl 3.0 for some time. I mourned my job, my work, my efforts, and I obsessed over all the women who were no longer recieving the support that we had been providing. I had panic attacks. With that job, I had built a purpose for my cancer, a reason, a tool to use it for someone else's good. That time was very dark for me. That's when Sad Cancer Girl 4.0 took over.

Because my knees could no longer handle the pummeling I was dishing out, I discovered cycling. It truly is one of the best things that ever happened to me. I found joy on the bike. I found emotional and spiritual release. And my body felt good. I wasn't punishing it any longer and I felt stronger than I ever had in my life. Cycling gave me faith in my body. I started to see it as what it always had been.. my partner throughout this cancer ordeal. I learned to honor it and cherish it and thank it for all it had taken on my behalf. Cancer Girl 4.0 was born!

And then...I started to have some troubles. I was diagnosed with Psoriatic Arthritis, an auto-immune disease similar to Rheumatoid Arthritis. I started having some significant joint problems, particularly in my hands and feet. My knees were destroyed from running. So I had them replaced...both at the same time...because I'm a Campbell girl, right? After a long recovery I was back on the bike. And in many ways I was better than ever...

Until I fell on the bike and shattered my kneecap... and broke the other one almost exactly a year later. But I came back, I recovered as well as I could and I was back on the bike. I was in pain since I had a knee cap that would never heal, but I kept pedaling. And despite my frustrations I still managed to find euphoria when I rode, even if it was more fleeting than ever.

Finally I developed a searing pain in my butt and leg. It turned out to be a severely crunched sciatic nerve. But during a routine chest X-Ray they found metastatic breast cancer in my lung. Further testing showed it in my bones as well.

So Cancer Girl 4.0 became Metastatic Cancer Girl 1.0.

Survival is no longer an option. The goal now if the LONGEST SURVIVAL POSSIBLE. And that is still my goal: to be the longest living patient with metastatic breast cancer. Because I NEVER. ADMIT. DEFEAT.

I adjusted as much as possible to being Metastatic Cancer Girl 1.0 . I got used to my medication regimen and the side effects were not keeping me down too much. But I did have that persistent sciatic pain to deal with. Two surgeries later, including a spinal fusion, I'm thrilled to say that I am almost 100% pain free.

But it took its toll. I couldn't ride a bike anymore. Or exercise much at all, other than gentle, short walks.

I quit my job that was not making me happy. And on a positive note, I allowed myself to live the creative life I always wanted.

Then came the recent discovery that I had new metastatic lesions in my liver.

So I am now Metastatic Cancer Girl 2.0. I hve a new medication. With side effects that limit me. And I am trying to find out WHO. I. AM.

I am mourning the loss of the physical kick ass I used to be. There was comfort in that. There was a high in living physically aggressively, challenging my body physically, and finding courage to keep pushing.

But there's no more pushing anymore. Acceptance is on the menu. And while most days I feel I'm doing pretty well, I still get seduced by the dreams of the old me.

I am not giving up by any means. But trying to define myself in this new body, in these new, unalterable circumstances is hard.

I know that now there is no reinvention. Now I have my greatest challenge: to face this as 100% real, distilled, authentic me. Everything about that should feel good. But I'm struggling to make it feel natural.

So I work. I work creatively. I express myself with my hands and my art. I am quiet. I feel. I remove distraction. I just am. I don't run. I don't hide. I don't focus my energies elsewhere. I am as I once wished for, being 100% authentically, apologetically me.

And it is the hardest thing I've ever done.


  1. I don't know what to say. There are no words, but I wanted you to know that I read this post and I hope that you are able to make the best of the days and find peace. There's someone out here cheering you on.

    1. Thank you so much for your sweet comment. It was a difficult decision to even post these thoughts, since they’re, well, not fun! I really appreciate you reading my post and sending your support. All the best!

  2. Hello Alane, I follow you on IG and have known a bit of your story and felt inspired by your courage and strength. I read this post and realize that I do not know what I could say to support you. And yet I feel the desire and need to speak up, to offer witness to your journey. It matters, YOU matter. You matter to those of us out here learning as we go, walking our paths. Thank you for your courage to fight and your courage to share your truth with us.

    Michelle in Seattle ��

    1. Michelle...I am so sorry I haven’t responded to your message before now. I can’t thank you enough for it. I find your words particularly meaningful because I have often felt that a major part of my job as a human has been to bear witness to other people’s pain. The fact that you used those exact words has completely stunned me...and means so much. Thank you very, very much for your willingness to listen.

  3. Your strength and fortitude is phenomenally written. I know your dancing breaks are well deserved and the joy you share for life is appreciated! Hugs!

    1. Thank you so much, Ann!!! I am so grateful for the support. I am dancing as much as possible!!!!!! 💗


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