One year with cancer

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And so a year ago today the words “Yes, your son has cancer” were said to us.

We were hanging out in Adler’s hospital room with Papa Ray and we hear this loud voice coming down the hall.  Happy and singing almost.  It was Dr. Lula, Adler’s newest team member.  His Neuro Oncologist.  He came in all smiles.  A tall man with a great big heart right out in the open.  He chatted with Adler about all the stuffed animals on his bed and his super heroes in the window and then said to us “let’s take a walk down the hall to talk”.  I was still in my clothes from yesterday that I had slept in and Aaron just back from my parents apartment freshly showered.  I didn’t want to go down hall.  A second location is never good.  Ever.  So we follow him to a small office type room with a table in the middle and a couple desks with phones available.  The table had 5 chairs around it.  Dr. Lula sat down comfortably and I sat across from him and Aaron in the middle at the head of the table.  He started to talk and my heart raced, my palms sweating and my mind on fire with fear.  I looked at Aaron who just had this smile stuck on his face while I sank deeper into the what if’s in my head.  He said “well, here it is” and with a very detailed conversation every base was covered.  From the pathology results to drawings of where the tumors were and possible “why’s” and “how’s ” of Adler’s cancer.  And I asked twice I think, “So Adler has brain cancer?”  Questioning it.  Dreading it.  Fearing it.  Feeling it.  And he said “yes, he does”  I grabbed for Aaron’s hand under the table. He barely spoke.  Dr. Lula told us “I will say this one time and one time only…..he’s got a 40% shot that chemo works”  Due to the fact that Adler’s tumors are all inoperable they need to shrink.  “I will do my best to make him an old man with these tumors” he said smiling and leaning forward closer to us as if to be reassuring about it all.  45 minutes almost exactly we discussed it all.  Results, meanings, the possible 3 cancer’s it could be….the one he as most certain it was and how we would attack it.  The 2 types of chemo he would be getting or the next year through a port that would be surgically placed the next day.  We went over side effects, what to expect and how to handle and treat it all.  I have the papers with all the details right in front of me today.  I still cannot place words on my feelings at that moment.  It was horrifyingly real and true.  Our son has cancer.  Jesus Christ.  Our son HAS CANCER.  We stepped out of that office area with the papers in hand and heads filling with thoughts like a flood.  The storm not only was brewing it was cresting.  Waves crashing over me.  Taking me down, down, down.  Rolling, thunderous waves crashing on top of me and I cannot catch my breath.  We walked back to the room where Adler was playing with his Grandpa and Aaron sat on the couch and I held his head next to my chest.  Now the tears were starting, for both of us.  How? Why?  The bewilderment that came was so fast and cunning.  It snuck up and slammed into me.  I said we need to take a walk, and I want to call my mom.  We went down to the cafeteria area where they have a bamboo garden and I made the call.  I could barely get the words out between sobs.  “Well, we met the new doc and he told us Adler does in fact have cancer”.  She wept as I did.  When I hung up I couldn’t stop crying.  It hurt.  It hurt so much.  And it still does.  The shock and awe of it all has dissipated and the waters calmed by a full year’s worth of emotional ups and downs.  New words and meanings like counts, neutropenia, nausea, vomiting, hair loss, weight and height, temps….ER visitis, weekly chemo.  Fucking chemo.  My son was only 4 then.  Come on.  4 years old.  And his pain was still there too.  Why us?  Why HIM?  We did everything we were supposed to do to plan our family.  I wasn’t supposed to have a child because of my heart but we wanted one, just one.  I read, I ate right minus all the ice cream….we planned it out.  Did genetic testing even.  I fed him all organic foods once he could eat table foods.  I was kind of a sickly kid so I didn’t want him to be so I tried all I could to not have him be that way.  It’s not fair.  Its just not fair I kept thinking.  Our only child gets fucking cancer.  What cruel joke.  I remember walking to the apartment to shower and could hardly handle the water hitting my skin.  It hurt.  I was completely shattered.  A million pieces that I had to now pick up and start a new with cancer.  A heart really can break.  Mine did.  We held him so close that night.  We met the brain and spinal tumor counselor who brought us a book about it.  We now call her Harley Quinn, she digs it.  We also met the hemoc/oncology child life specialist who came with the chemo duck and the doll to show Adler all about the port that would be placed in him to receive chemo through.  We kept thinking we needed a theme, something to hold on to.  So that is where Bold As Love came from.  We had to find something to grasp onto to.  A life preserver if you will.  And it fit. Michael was a musician that came in with his guitar too and sang to us.  He sang a few selected songs to us and Three Little Birds by Bob Marley was on too.  It has stuck to that day ever since.  “every little thing gonna be alright”  God, were we clueless at that point.  But the weeks that followed before chemo began and before we met Dr. Morrison his oncologist here in town, we held tight.  Bunkered down.  We didn’t tell Adler right away as we didn’t want to scare him with adult details.  We have never spoken to him like a child so we needed time to think about it all.  To process it ourselves before we laid it on him.  We were about to begin the fight for his life.  The fight for our son’s life that we created.  And I was determined to know EVERYTHING I needed to make sure it would turn out as a success.  But as his parents we had to let ourselves teeter on the side of the fact that cancer is in fact a killer and he could die.  Yes, he could.  We didn’t dwell on that fact we just allowed ourselves to feel it.  It was necessary to be real with ourselves.  We still are.  Yes, he is stable today a year later, but our fight isn’t done yet, it may never be.  We do not know the length of this journey.  And I may never fully recover from this and I know that.  I have a fabulous therapist who helps me with these feelings.  Our support team is amazing.  I don’t give them enough credit.  Our community has rallied for us and still is a year later.  Some friends have come back to me, others have left and that’s ok.  It’s all about replenishers and depleaters.  A full year with cancer.  A killer lives in our son.  May we all make it through this as sanely as we can.  The storms pick up strength every 3 months when he has MRI’s and I lose my breath again for a day or two just like I did that afternoon when we met Dr. Lula.  I close my eyes and remind myself that though it hurts, it sucks, it’s hard and despicable…..I just tucked him in his nice clean sheeted bed with all his favorite animals to cuddle with here at our home.  Not in a hospital bed.  I try to stay as strong as I can and hold my shit together but some days I just have to cry and scream and yell and ride the storm out inside my mind and body.  My spirit aches for distraction from this reality we live in and I do my best with music and books and time alone when I can get it.  And just keep breathing, keep loving and keep fighting and keep hoping.  Healthy and happy one day at time.  A full year with cancer…..oh my….oh my.  Tears and smiles today for the mighty Adler Bear!!

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9 thoughts on “One year with cancer

  1. I don’t think any human being can get through your passage you just wrote without their heart skipping a beat or losing their breathe. Thank you for sharing your journey and letting us lift you when needed.

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  2. I can’t imagine the pain, fear, anger you must deal with. It’s hard enough as an adult to hear the horrible word of “Cancer” but to have your precious child have to deal with it, simply heartbreaking. But what amazing parents you are, he has the very best to be in his corner! God bless you all

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