Timelines

It took me six years of trying to heal after breast cancer to realize, that's not actually my goal.

I've been wanting to write a blog post for months now. MONTHS. But every time I sit down I am discouraged by my lack of energy. Or I am overwhelmed by the thoughts - the enormous thoughts - that swirl around me. So I'll start small. I'll start with one thing that's been on my mind. 

I'd been doing myself a grave disservice by saying, when referring to healing after breast cancer, that I'm "Still in pain.." or "still suffering from anxiety/depression.." or "still fear scans" or "still feel like I'm going to get cancer again." Or despite therapy, medication, physical therapy, cognitive behavioral therapy, "I never got better."

Guess what? That wasn't the goal. 

It's not that I've been lying to myself. It's not that therapy and medication and CBT and all my attempts to minimize my pain (pain management clinic, PT and exercise) have been for nothing. It's that, somewhere along the way, I expected to be "better" or "OK " or "healed" by now and became increasingly frustrated that I wasn't.

Excuse me? Who came up with the timeline that I would be "better" six years after breast cancer, or 20 years after Leukemia? Or despite seeing multiple doctors every few weeks and undergoing scans and tests and dealing with LFS, that I would "adapt to my new normal and just carry on.."

Who came up with that? (hint: it was me.)

I told myself as long as I was working, and volunteering, and piling on advocacy like a Jenga game - Tour de Pink and Pink Zone and public speaking and fashion shows and YSC and half marathons and sharing my story and this and this and this and this .... (breathe) I was somehow "healing" and "getting better."

But we don't GET BETTER.

(Updated from original on 9/13):

And we also don't choose what we grieve. Or what losses we feel.

I kept trying to tell myself that there are far worse off people in the world than me ... that I'm lucky and blessed (which I am) and that what I went through doesn't compare to the heartache others face. But that doesn't do me any good, either. Because I finally understand WE DON'T CHOOSE WHAT HURTS US. And comparing it to others' perceived pain is just that... perceived. We can't possibly know how another person deals or doesn't deal with his or her life events. We only know how WE, ourselves, deal. And that's all that matters.

And that I can still be blessed but also be in pain. That I can be lucky but still suffer from sometimes crippling anxiety. That I can be happy but also sad. That I can be indescribably in love with my daughter, and feel that life has blessed us beyond words. But I can also mourn not being pregnant. It's not that I WANT to be pregnant. We CHOSE adoption.

But I can also grieve the choice I lost - the choice that we say we made because we did - but at the same time, we didn't choose Li Fraumeni Syndrome, and Li Fraumeni Syndrome essentially took away the choice. LFS and the cancers that came before the diagnosis essentially did lead us down the path of adoption. We chose adoption, yes. But we did not choose the circumstances that brought us here.

So now it's time to grieve.
Pregnancy that won't happen.
Breast feeding that won't happen.

So telling myself that what has happened to me "wasn't bad enough to still feel this way or that .." was also another disservice. Because try as I might, I don't get to choose what effects something has on me. And I certainly don't get to choose when those effects might lessen. If it WERE my choice to stop grieving and to stop feeling pain and anxiety, I would have by now. I would have. 

http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason

Read that. 

That post is everything. Tim says "Some things in life cannot be fixed. They can only be carried."

Somewhere along the way I tried to drop the pain - literal and figurative, by filling my arms up with my work - mentioned above. 

But, I don't want you to worry. Nothing new has happened. I'm essentially in a state of productive existence (I just made that up), meaning I'm carrying on and enjoying life, and keeping most balls in the air, but suffering from pain and anxiety. (I'm not STILL suffering; I'm just suffering.)

This is just me writing after a long hiatus. But I will tell you this:

I'm having more anxiety attacks than I was previously. I'm still seeing Dr. Kelly and still on antidepressants and anti-anxiety medication. I still exercise. And now I'm starting up physical therapy again. Not because my pain is back. But because it never went away.

And that used to KILL me - that PT helps but I'm never pain-free.  ("Why am I not better yet?! I've been doing everything I can possibly do to limit the pain. Foam rollers, PT, exercise, stretching, chiropractor, massage.")

I would say to Sean and to Dr. Kelly, "We tried everything. I never got better."

NEVER. GOT. BETTER.

This physical pain is here to stay. I must carry that now.

I've not lost hope that one day I'll be pain free. The difference now is there is no timeline. 

So for now I want to fully acknowledge that "healing" from breast cancer is no longer my goal. I'm going to let myself actually FEEL everything I threw away while I was busy "healing."

While I was "healing" I was running 5Ks and then a half marathon, and then doing Tour de Pink (still doing Tour de Pink as a volunteer) and sharing my story across media and at community events, running a support group, getting involved with the YSC and attending summits, attending LFS conferences and participating in a LFS study at the NIH, talking about my journey, blogging about my journey. 

Would I change any of that? Absolutely not. All of those things- I needed them, and I still do. They are good for me. They have helped me.

But while I was doing them I forgot to feel the pain below the surface, and actually mourn everything breast cancer took from me.

I tried to hide from myself what the breast cancer took from me by busying myself with what it GAVE me. 

It gave me strength and knowledge and a beautiful family. It gave me new friends, new connections, new information. 

And that's great. That's fantastic. But because I never let myself actually grieve what it took (my breasts, my reproductive choices, and the freedom of not worrying about a lump or bump), I set myself up for an unrealistic timeline of when I'm supposed to be "better" - whatever that means. I'll never be unaffected by cancer. Ever.

I bite the bullets and sign up for another 10 physical therapy sessions. Another appointment at the pain management clinic. Another blood draw. Another full day at the NIH, missing work. Another trip to Hershey. And again, six months later. And I'll be angry: that I have to miss work, travel to Hershey or the NIH, and go through this testing, and trying to get rid of my pain while also working full time and being a mom and wondering WHY AM I NOT BETTER?!

That ends NOW.

There is no timeline.

I am here. In the midst of all these appointments. I resent most of them. But maybe if I let go of my timeline I'll resent them less. Or maybe not. Whatever the case, I'll let myself resent all of it, if it means I'm going to carry the grief and let myself mourn. 

It's where I am and I'm not going to pretend to be anywhere else.