When

When?  This is what I want to ask.

When will it be enough?

When will it stop?

When will I heal?

I struggle to surrender to the outcome.  This doesn’t mean giving up, this means accepting my circumstances, letting go of what I cannot control, and controlling what I can.

Seven days before my 40th birthday my oncologist looks at me solemnly while my physician assistant sits nearby looking down at the floor.

“The treatment’s not working the way that we had hoped.”

How can I ever trust myself, my gut, my intuition, my heart, ever again?

No days are ever perfect but my meditations lately and the quiet in my heart had told me that the treatment was working.  Is working. Even if not perfectly, it was doing something.

They’ve grown.  The tumors, they haven’t shrunk or stabilized as we had hoped, they’ve actually grown.  I think I hear numbers as to how big (or small, gratefully) they are, but I don’t remember.

I don’t remember much after hearing that the treatment isn’t working.  I think my Mom and I ask questions because that is typical of us, so many questions, but I don’t remember the answers.  My Mom writes things down in her notebook but I am sure that she’ll look at that piece of paper later and wonder how the words got there.

We go to the hospital cafeteria, hold warm cups of coffee between our shaking hands, and cry.  We let go of the warmth and hug each other; this brings more warmth and yet also a great, deep sadness than my heart could ever hope for or know.

Beforehand, through a stream of tears that I couldn’t even try to control, I ask my oncologist and my physician assistant to stay hopeful with me.  I let them know that I understand that this part of their job must be very tough (hence the look on their faces) but that I still feel hopeful and optimistic, and I need them to stay with me in that place.

They agree; “this is why we’re going to come up with another treatment plan”, they say.

There are some cancers with no treatment options available, so I remember that and hold that bit close to my heart, feeling thankful that there are options available to me. But I also wish that there were more, is that selfish?  Ungrateful?  There aren’t that many options and my mind wonders if this FDA-approved treatment didn’t work, will a clinical trial?

My friend S points out that even to get to a clinical trial, there has to be some real hope there.  “It’s not just some guy mixing up a potion in a basement!” And she gives me hope and laughter all at once.

Three years ago, almost exactly, I got news that though my immunotherapy at the time seemed to be helping, after a while things started to grow again too.  I remember thinking that I had been doing so many positive visualizations and such, how could this happen?

And then SHL said something so powerful to me that I’ve never, ever forgotten it.

He said, “But what if you weren’t doing all of that?  Maybe it could have been even worse.”

I can’t tell you how much this thought brings me peace.  Meditation is the gift that I give to myself every day, or frequently, anyway.  Visualizations of white healing light, reiki, looking for the miracles every day, gratitude, giving myself the space to not get out of bed, drinking green juice and then having a piece of cake… These are all things that make up who I am.  Who knows who I would be without these things?  They bring me calm, they bring me peace, they make me a better person for SHL and for all of you (I hope).

The day of the scans last week I thought to myself: “Look for the miracles.”  It’s always a stressful day but I believe that there are miracles to be found perhaps not every single day, but a lot.

The day of the follow-up with my oncologist, I thought to myself “Look for the miracles.”

Later in the day after I got home from the doctors appointment and showered and took an Ativan, I climbed into bed and closed my eyes.  I wondered if there had been a miracle that I just hadn’t seen.  Thinking of the possibility that there may never be a cure or that treatment may not work and I may die from this clouded everything.

I saw no miracles.

Since then I remember that thank g-d the tumors are small.  There are still options to try.  I still have those tools that make some of this bearable, like meditation and massages, sleep and love.

Sometimes our miracles look differently than we thought they would.

I don’t want to die.  I’m not ready.

After I was diagnosed with the treatment-induced diabetes (which most likely has ruined my pancreas and despite not being on the medication anymore, I will probably still have diabetes for the rest of my life), I hit a wall.  I relished smashing pieces of candy with a rolling pin for an ice cream cake that I was making for my friends who host game night.  I mean, I went to town so hard on that poor candy that SHL looked frightened.  (If those snickers could talk). I wandered around the house muttering and complained and took my time feeling sorry for myself.  I now check my sugar three times a day and the prick of that needle is actually way worse than giving yourself insulin, in my opinion.  The four doses of insulin that I give myself every day and the pill that I take in the morning and the monitoring my carbs is all way easier than that stupid little needle that has made my fingers all calloused and tender to the touch (yesterday my index finger touched a box as I was getting rid of some recycling and a wave of pain went through my whole body).

When?  I want to ask.  As if somebody is pouring me a glass of bullshit, and I’m done.

I have had enough.

What does this mean, exactly?  I’m not sure.  I know that I’m not done fighting, not even close.  I know that I’m not done living a phenomenal life.  I know that I’m not done loving or being loved.

Tomorrow is my 40th birthday.  I’m not nearly done.

But sometimes, life hands you lemons and instead of lemonade, you just want to take those lemons and beat them with a baseball bat.  Not into a cool summer drink, but into a pulpy oblivion.

I have had enough of scans and doctor’s appointments and achy legs and insulin and of being scared, of being angry, of being fearful.  I don’t want this anymore, don’t know if I can handle it anymore.  People say that I’m brave and strong and inspirational, but I just see it as living.  Breathing.  Surviving.  And sometimes, with the right timing, yes– thriving.

Sometimes.

And so, since I’m not yet done with life, and I refuse to believe that life is done with me, not even close to it, I keep on.  But some days I honestly do stay in bed because the thought of even brushing my teeth or putting on clothes makes me tired.  Makes me feel like crying.

I do it my way.

That is the only way that I can do it.

When.

 

 

 

 

 

 

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