Motion, Commotion, and Compassion

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OK, so here it is folks.  Something that I’m not “supposed to say” as one who lives with cancer.  Oh and who made up that rule?  Me of course.

Time is so precious.  I get it!  But sometimes things get in the way of you appreciating time– like treatment-induced diabetes and hypoglycemia and eye doctor appointments where they actually put a wire speculum on your eye to keep it open for a shot that hopefully stops abnormal blood vessels from growing– and to try and push yourself against that time and struggle is just too much.

I’m on auto-pilot.  The days are a little bit of a blur.   I don’t feel quite like myself and I’m not doing much about it.

There, I said it.  The hours, minutes, seconds that are so precious when living with an incurable disease have begun to run into each other like a sentence that makes no sense.  Perfect because cancer makes no sense.

It’s been over 3 weeks since I heard from my doctor that he doesn’t think my current treatment is working; if it seems like things are moving like molasses-slow it’s because they are.  Usually I would have had a plan by now.  But my doctor went on vacation (uh, can he do that?  I have cancer), and now I’ve been waiting to see another doctor for a different kind of consult (got to dot your i’s and cross your t’s.  It’s too huge of a decision to make without doing your homework).  And believe me, we’re on the ball.  But I guess if they’re in no rush, this means that I’m not about to croak any day, so I take this as a good sign?

It gives me so much time to think about the croaking thing.  To think about the choices that I have to make– so grateful that there are choices, but we never really know if we’re picking the “right” thing or not.  Nobody can tell us, nothing is a guarantee.  We rely on the “one day at a time” and “listening to our intuition” and “doing the best research that we can,” and we give it up to g-d and the universe and pray that these decisions result in more time.  More time to find a cure. More life.  More love.

Please g-d.

Here’s the truth:  I’m just going through the motions.  Not when it comes to figuring out the next steps of my treatment plan, but just rolling through the days that entail work and cleaning the house and catching up on emails.  When my alarm goes off at 7 in the morning I think about how much money I would pay to be able to stay in bed until I’m good and ready to get up.  When I’m at work it’s usually a nice distraction from the rest of the world, though some days it’s harder than others to help others.  When I rest my head on the pillow at the end of the day I sometimes feel so relieved that I don’t have to talk or write or type or listen or do anything.  I just want to close my eyes and not have to do anything.  Did I mention that I love doing nothing right now?

Life feels so exhausting right now.

I long to get back to the me who feels in her own body, who feels grounded and filled to the brim with hope and possibility.  I long to feel like myself; I can’t put that exactly into words, I’ll just know it when I feel it again.

And, for the first time maybe ever, I let myself release and give in to the universe without any guilt (or as little guilt as I’ve ever felt).  I wish that I was taking better care of myself; wish that I hadn’t eaten that (frozen) left-over birthday cake weeks after my birthday, wish that I could move my body even in slow-motion on the arc trainer in my basement, wish that I could sleep more.  But I let it go.  I stop resisting.  This is how it is right now; cake and couch and getting up at 7am M-F.  “Let go,” I tell myself when I am rewarded with sleep (or even just with my nice comfy warm bed).  I’m not letting go of hope or action and I’m not giving up, I’m just trying to bathe myself in compassion, for all that I have and am going through.

This may actually be what my body and mind need right now:  Stop the soul-searching, just be, watch Real Housewives and put off paying the bills and put off even writing because you’re too much in your own head.  Don’t do much of what you don’t want to do, because so much time during the week is taken up with doctor’s appointments and needles and tests and too much thinking.

I’m going through the motions all while trying to quiet the commotion in my brain.

These are the thoughts of a cancer patient.

 

30 Things I Learned in My 30’s

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On my the eve of my 40th birthday, as I leave the 30’s and enter into a new decade, I share with you the 30 things that I learned over the last 10 years:

  1. There are way more than 30 things that I’ve learned in this decade.
  2. I believe in miracles.
  3. Get a second opinion.  ALWAYS get a second medical opinion.
  4. When in doubt, sleep on it.
  5. Practice compassion towards yourself and others–everybody is doing the best they can with the tools they have.
  6. Meditation can save your life.
  7. If meditation doesn’t save your life, find something else– anything else– that grounds you and helps you cope with life’s ups and downs.
  8. Find what sets your heart on fire and do it.  For me, that’s traveling and I want to have adventures all over the world with SHL.
  9. Do what you want to do, when you want to do it, as long as you’re not selfish or hurting anybody else.  Life is filled with responsibility and crap; the rest of the time, enjoy yourself.
  10. Surround yourself with people who are not just like-minded in how they treat you and others, but who have positive energy/vibes.  Life is too short to get caught up in bullshit.  Leave that in middle/high school.
  11. When you feel like life throws you a curve ball and you’re in the trenches, do something nice for somebody else.
  12. Clean up your side of the street (as Gabby Bernstein says).  It’s the only side you actually have any control over.
  13. Have an open mind.  If I didn’t, I never would have met my husband through Facebook.  After all, he lived in Canada!  Where did I think that relationship could go?  Turned out, this random guy from Facebook is my soul-mate.
  14. Be authentic.  You don’t have to write a blog or post your every feeling on Facebook, but just be yourself in whatever way feels good to you.  It’s way too much energy and effort not to be.  And for what?  This is the only life we’ve got, we mine as well make it our own.
  15. The deeper you go with the people you feel safe enough to be vulnerable with, the greater the love and support that you will feel in your own life.  Guaranteed (if you open yourself up to the people who “get it” and “get” you).
  16. Nobody’s life is perfect, even though it may look like it.
  17. Find others who you can look up to; I have learned so much about love, self-compassion, healing, forgiveness and being in the present moment from Kris, Gabby, Lolly Galvin, Ella Woodward, Brenee Brown, Glennon Doyle Melton, Geralyn Lucas, Matthew Zachary, and many others who are constantly striving to live their best lives possible while helping others.  We don’t know it all; admit that you don’t and learn from others.
  18. If you have a miscarriage, even before hearing a heartbeat, you’ll never stop loving that baby that could have been, and wondering who they could have grown up to be.
  19. Show up for anyone and everyone who means something to you.  Whatever that looks like, just show up, in any way.
  20. Say you’re sorry.  Oh man, I know this is hard, but it can be so freeing, so humbling, and it can even take your closest relationships to a whole new level.
  21. Give second chances.  Boy am I glad that I have and that others have done so for me too.
  22. When life hands you lemons and you don’t know else the f*ck to do, follow these steps:  1) Take out some small candy bars of your choice 2) Put them into a zip lock bag 3) Put the zip lock bag on a sturdy cutting board, 4) Proceed to smash candy with a rolling pin or a cooking pan.  5) If your tears don’t taint it, turn that smashed candy into the best g-d damn ice cream cake your friends have ever tasted.
  23. Cry, when it comes naturally.  Let it flow.  Let it heal and ground you.  Don’t ever force it back inside; it will only come out in other, unhealthy ways.  As painful as suffering is, suffer.  Face it.  It allows you to be more in the present moment.
  24. Have gratitude for everything– I mean the big stuff (your family, spouse, kids, health, money to take care of your basic needs and then some, home, friends, job, whatever) to the “little” stuff (warm shower, running water, birds singing, a dog’s smile, crocuses blooming, a funny movie, a beautiful meal, coffee with a good friend, a warm embrace, a note from a loved one, a cat-like peaceful nap, a great piece of chocolate).  Then remember:  There really is no such thing as a “little” thing after all.
  25. Let the gratitude rise to the surface in an organic way.  It’s nice to keep gratitude lists and have a daily practice (I do), but there will be some days when life hands you a big bag of shit and you don’t want to say “thank you.”  That’s OK.  Be true to your soul.  Say thank you when you mean it.  That’s the best kind of gratitude, the authentic kind.  The kind when you’re eating lunch with your best friend and you realize how freakin’ lucky you are that tears just melt down your face.  That’s gratitude.
  26. If there is something that you want, go after it.  Our only limitations are in our own minds.
  27. Take your own advice.
  28. If you only read one “self-help” book, let it be something by Thich Nhat Hanh.
  29. There is no map.  Really.  We may think we are destined for one thing, but if a door closes, promise yourself that you will still live a great life, despite what you think you don’t have. You create your own journey, nobody else can tell us what great is.
  30. Love.  Love deeply, gently, authentically, without expectations, passionately, and with abandon.

31) Bonus:  Feel the fear and do it anyway.

Extra bonus: If you ever need to spend the night in the hospital, bring your own toothbrush. For the love of ug-d, BYOE (bring your own everything!).

Love,

Sam xoxo

When

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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.