What Love Is

When I was a little girl and my brother was leaving for college, I gave him one of those “Love Is…” cartoon statues.  It said, “Love is…never saying goodbye.”  I was devastated that he was leaving home, and I cried myself to sleep for a week.  That statue gave me a little comfort that my brother wouldn’t be gone forever.

My first memory of my brother is when I was three years old.  I know I was three because we had just moved to Broken Arrow, Oklahoma, and we were unpacking.  My brother was playing his music loudly.  He was listening to Credence Clearwater Revival, and the song was “Looking out my Backdoor.”  I stretched my arms up, an indication that I wanted Ken to pick me up.  He did, and he carried me outside to our new back porch, and we danced around while I giggled and tried to sing the only part I knew – “do, do, do…my…door.”

When I was seven years old, my school teacher gave us an assignment to write about the person we admired most.  Of course, I wrote about my big brother.  What was not to admire?  He was funny, cool, one of the greatest athletes of all time as far as I could see from my small room in Broken Arrow, and he let me sit on his motorcycle once, against my mother’s wishes.

I believe I’ve mentioned before that my brother was the good child, which meant he had more influence with my parents…especially my mom.  He often used his status to intervene on my behalf.  When I wanted to go to college at Vanderbilt in Nashville, my mother was up in arms.  “Why would you go all the way to Tennessee when Tulsa Junior College is right down the street?”  My brother was the one who talked my parents into letting me go.  He told them it was a good opportunity, and they would understand one day.

When I moved to San Francisco, my mother was livid.  “Not that Sodom and Gomorrah!” she said.  Again, my brother stepped in and argued my case.  Then he bought a Road Atlas for my trip and highlighted the route I should take from Broken Arrow to San Francisco so I was sure to be safe and not get lost.

Yes, I have always adored my brother.  I am admittedly and decidedly blind to any of his faults.  If someone told me Ken had done a bad thing, I would call them a liar.  I cannot ever remember being angry with him or arguing.  That was probably because with more than ten years between us, there really wasn’t much to fight about.

On January 17, 2010, I received a phone call from my brother.  He began the conversation by telling me how much he liked my stories.  How he had laughed until he cried at the story about mom and her next door neighbor because it was a much more potent story for all of us who knew my mother.  He told me he was my biggest fan, and I think that’s definitely true.  Big brother bragging eventually subsided, and he said he had some news.

He had been complaining about a persistent winter cough that wouldn’t seem to get better.  The doctor ran tests.

“Lung cancer,” he said.  I heard everything else in pieces.  “Stage four.”  “Spread to the adrenal glands.”  “Deciding a course of treatment.”  “Planning to fight it.”

The reason I did not mention this important development early on in this year’s blog is because he asked me not to.   He wanted to keep this a private, family matter for now, and I understood why.  People can have the best of intentions, but once a diagnosis like this is made, it tends to define you.  He didn’t want to be labeled only as a cancer patient, and I didn’t want that for him either.  Truth is, I would have honored absolutely any request he made of me, and this one seemed simple enough.

So when I wrote about my brother being sick on the day of my mom’s surgery, he wasn’t just battling a cold or flu.  He was in the midst of a brutal round of chemotherapy that left him hairless, emaciated, and in excruciating pain because he was rarely able to keep pain medicines down.

One of my Phuket list goals this year was to get a map, point to a destination, and road-trip it there spontaneously to escape some monumental problem.  I did that after I heard the news about my brother.  I drove from San Francisco to Las Vegas.  And then, I realized I wasn’t in the mood for Vegas, so I turned around and came back.  The trip didn’t help, but we can cross that one off the Phuket list.

My brother has always been an optimistic person, and that’s how he approached his battle with cancer.  After completing a round of radiation therapy at MD Anderson in Houston, Ken reported that the main tumor had shrunk and was considered inactive.  Now all we had to do was go through chemotherapy to tackle the cancer that had spread to his adrenal glands.

In late March, he began some very aggressive rounds of chemotherapy.  Whenever I called, no matter how sick he felt, he always reported that he was having a good day.

Living in California meant that I didn’t see Ken every day, and I only received progress reports over the phone.  I visited him in Houston while he was getting radiation treatments, but that was back in February, very early in the process.  On May 31, I came home for my mother’s surgery.  When he walked in the door of my mother’s house, I didn’t recognize him.  I would not have recognized my own brother walking down the street.  The former defensive line backer, Oklahoma football player and state heavyweight wrestling champ now looked like a frail, old man.  His cheeks and temples were hollowed out, and something was wrong with his eyes – like he was here, but not here.

After my mother’s funeral in early June, I committed to spending more time in Oklahoma.  I came back for a week in July, and we had a great time together.  My brother seemed to be feeling better and he was still getting around well.

Ken lived in the middle of nowhere, about 18 miles outside the small town of Tahlequah, Oklahoma.  He had acres of land and had recently purchased ATV 4-wheelers to ride around the property.  My brother was not a frivolous person, so I was glad to see him splurging a little bit on something fun.  I couldn’t drive the ATV, so I sat behind him and held on to his weak body while he took us for a ride.  His bones were so pronounced that they poked into my arms and chest.  Yet, I held tightly to my brother, trusting he could still keep me safe.  As we rode around his property that day, I rested my head on his back and breathed in deeply.  I wanted to remember the smells, the lines on the back of his neck, the tiny white hairs starting to grow back on his otherwise bald head, his tired arms still controlling the machine that carried us.  I remember every detail.

On my next trip, I asked to go with him to the doctor.  I wanted to understand for myself exactly what was happening.  The only information I could get from Ken was his standard mantra – everything was going well and he was having a good day today.

The doctor came in with Ken’s latest CT scans.

“As you can see, the tumor in your lung remains stable.”

Good news, I thought, and I smiled at my brother, a bit relieved.

“However, the tumor next to your kidney has grown by 5 centimeters, and the tumor on your liver has grown by 6 centimeters.  This one over here has grown by 3 centimeters, and this one here also has grown by 3 centimeters.”

Dear God!  How many tumors were there?  I thought we were dealing with one or two!  The fact is, my brother’s body was covered in tumors.  He simply never told anyone.

The doctor continued.  “At this point, I think we stop treating this as a lung cancer, and start treating it as an abdominal cancer.  So, let’s discuss drugs that are primarily focused on the abdomen.”

I looked at my brother, and I could feel the tears coming, though I knew crying was the last thing he wanted from me.  He saw me anyway.  “Don’t worry, Janie.  This is good news.  Now we have some additional information and we can attack the problem from a different angle.”

I asked the doctor where I could find a restroom.  My intention was to get in there and just cry.  But once in the bathroom, I couldn’t cry.  All I could think was, breathe…breathe…breathe.  Just go back into that room and do one thing and one thing only.  Keep breathing.  And that’s what I did.

That evening, I tried to talk to my brother about his wishes.

“Ken, one great thing that mom did for us was have a well-documented plan for what to do in the worst case scenario.  Now, I’m not saying the worst case scenario is happening here, but we should talk about it just so we know.  I’ll tell you what I want in case I die, and you tell me what you want.  That way we’re both prepared.”

“I’m not giving up,” he said.  “I’m not giving up.  Don’t you give up either.”

“I won’t.  I’m not.”

And that was the end of the conversation.

One good thing that was happening during this summer of family trauma was my business had picked up and I had some fantastic new accounts.  One gig in particular had me working with the Boston Red Sox, and that meant I was in Boston for much of the summer.

My plan was to go back to Boston for 2 weeks, pass off my work with the Red Sox to a colleague, pack a bag and come back to Oklahoma indefinitely.

On Tuesday, August 17, I called my brother from Boston to check in. He said he was going in for a blood transfusion later that day.  This had become a standard part of his week.  His blood counts were so low from the chemotherapy that he was getting blood transfusions once or twice a week.  Otherwise, it was “a good day today.”  He had mowed the lawn and done some things around the house.  Not as much as he’d like, but he got tired easily these days.

That night, I had a dream.  I was talking to my mom.  She was bringing me up-to-speed on all the deceased family gossip, but then she changed the subject.  “When are you going to Oklahoma this week?” she said.

“Saturday,” I said.

“Saturday is too late,” she said.  “You need to go now.  When you wake up, get the first flight out and go to Oklahoma.  Your brother will wait for you, but you need to go now.”

This did not sound like something my mother would say, so I said to her, “This is just a dream.  How do I know it’s true?”

“Get on the first flight out.  When you cross through security, you will see a red piece of paper on the ground.  Then you’ll know it’s me.”

Right then, I woke up.  It was 3:00 in the morning, but the dream had startled me because it was one of those that seemed so real.  So, I did the crazy, illogical thing.  I booked the 6am flight back to San Francisco.  I would only stay in San Francisco long enough to pack a bag and then take the 3:00 pm flight to Tulsa.

By the time I crossed through security at Boston Logan airport, I had almost forgotten about my dream.  But then I saw it.  There was a glossy red piece of paper on the ground.  I leaned down and picked it up, and I knew.  My heart began to pound.

When I landed in San Francisco, I turned on my phone and it immediately rang.  It was my sister-in-law.  “Janie, we’re still at the hospital.  Ken had a hard time with the transfusion, so they gave him a port.  Now he’s really struggling.  They say they’re going to put him in hospice.  They’re giving him 2 weeks.”

“I’m already on the 3:00 flight today.  I’ll be there tonight.”

I ran home, packed my bag and went back to the airport to catch the 3:00 flight.  There are no direct flights from San Francisco to Tulsa, so I had to connect somewhere.  This particular flight connected in Minneapolis of all places.

When I arrived in Minneapolis, I had a text message from my niece.

“Janie, you need to get here.  Doctor says he’s not going to make it through the night.”

What??? How could he have gone from a transfusion, to 2 weeks, to not going to make it through the night in just a few hours?

“I’ll be there in 3 hours,” I said.  “Tell him I’m on my way.”

I boarded the connecting flight and we taxied towards the runway.  Just as we were about to take off, the captain announced that an indicator light had come on and we would have to return to the gate.

As soon as they let us off the plane, I went to the gate agent.

“I need to get on any flight going towards Tulsa.  I can’t wait for this flight.”  I explained that my brother was literally dying and I had to get to Tulsa.

The agent said there was nothing else going into Tulsa that night.

“Check anything in the area.  Fayetteville, Joplin, Oklahoma City, Little Rock…get me anywhere close and I will drive.”

Nothing was going out.  The last flight out was the one I was on.  “But don’t worry,” the agent said.  “They’re still going to fly out tonight.”

After an hour, they couldn’t fix the plane, so they arranged for another aircraft.  Again, we taxied down the runway, and the same thing happened.  Another indicator light.

When we got back to the gate again, I was hysterical.  “Get me out of here,” I begged the agent.  “This is literally life and death.  Get me to Detroit or Chicago or any hub where there are more flights.”

Absolutely nothing was going out that night.  The best they could do was put me on the 6:00 am flight the next day.

I sat down on the floor, somewhere in the Minneapolis airport, and I called my niece to tell her the news.  She said the doctor was in talking with Ken right then.

“Does he know what’s going on?” I said.

“Yes,” my niece said.  “He knows.  He’s fully conscious.”

How can a man who is fully conscious, able to speak to a doctor who is telling him his prognosis, and completely comprehend said prognosis be sick enough to not make it through the night?  None of this made sense to me.  My niece gave the phone to my brother.

“I can’t believe it,” he said.  “I just can’t believe it.  I thought I had more time.  I just can’t believe it.”

“I can’t either,” I said.   “Listen, Ken, I’m coming to you as fast as I can, but I’m stuck in Minneapolis.  My flight was canceled and there are no other flights out tonight.  Now, I know this is the most selfish thing I’ve ever asked of you, but I’m going to ask anyway…if you can, wait for me.  If you can’t, I understand.  You and I have had the best relationship.  There are no regrets.  No harsh words between us.  Nothing that needs to be said or unsaid.  I love you more deeply than you’ll ever fully realize and I know you love me too.  So, if you need to go, then go and I’ll understand.  But if you can wait for me…”

“Come on,” he said.  “Just keep coming.  I’ll be here when you get here.  That’s a promise.”

My brother’s birthday is December 29th.  As I mentioned in my last post, my mom wrote out all her birthday cards for the rest of the year and left them for me to send.  I had been saving Ken’s card, hoping I wouldn’t have to give it to him early.  But I’d had the presence of mind to grab it when I was packing in San Francisco.  I told him I had a note for him from mom, and I read him his birthday card.

When I finished, I reminded him again, “I’m coming to you, I promise. Wait for me.  I’m coming.”

I spent a long and sleepless night at the Holiday Inn near the Minneapolis airport.  At 4:00 am, I went back to the airport to make my 6 am flight.

Boarding was scheduled to start at 5:30 am.  Yet, no boarding announcement was made.  5:45 came and still no boarding call.  At 5:50, I went to the desk to ask what was going on.

“We’re waiting for one more flight attendant,” the agent said.

I once again explained my situation to the agent.  “Do something,” I told her.  “Do anything.  Call anyone.  But I have to make this flight.  Get this plane off the ground.  Get me to my brother.”

To Delta’s credit, they made calls and moved mountains to get a back-up flight attendant.  Within 20 minutes, we were taking off.  I hope to never see Minneapolis again.

Unfortunately, there were no direct flights into Tulsa until later in the day, so I had to make another connection via Memphis.  Our delay out of Minneapolis meant my connection was extremely tight.  We had landed in Memphis and were headed towards the gate when there was another ominous announcement from the captain.  We were being held on the tarmac for traffic control reasons.

The flight attendant already knew my situation, and I was in the first row, so she could see the panic on my face.  She picked up the phone and spoke to the captain.  “We’re calling the gate to tell them about your family emergency.  We’re going to do everything we can to hold your connecting flight for you.”

When we finally got to the gate, they held everyone else on the plane while I made a run for it.  I yelled at the gate agent as I ran past, “Call the other gate and tell them I’m running.  I’ll be there in 2 minutes.”  I did not wait for confirmation.  I just kept running.

When I got to my departure gate, an agent was waiting for me.  “You’re going to make it,” he said as I ran to the gate.  “You’re ok.  You’re going to make it.”

I called my niece to confirm that I had made my connection and was one 30 minute flight away.

“Hurry,” she said.  “Please hurry.”

When we landed, I sprinted off the plane, skipped baggage claim, showed my Avis Preferred card and told them to give me the closest vehicle to the door and I was out of there in under 10 minutes.

Again, I called my niece.  “I’m here!  I’m driving!”

“Get here, Janie.  Get here as quickly as you can.”  Then she said to my brother.  “Janie’s coming.  She’s in the car right now on the freeway.  She’ll be here really quickly.  Just hold on!”

I hung up the phone and drove as fast as I could.  When I got to the hospital, I didn’t bother with parking.  I pulled up to the ER door and just left the car.  My brother’s friend met me at the door so she could show me directly to his room.

Finally, I burst into my brother’s room.  He had an oxygen mask on that was forcing air into his lungs.  His mouth hung wide open under the mask as he sucked in air.  He couldn’t speak, and he was too weak to move much, but he turned his head slightly when I came in.  I ran to him.  “I’m here.  I’m here.  I’m so sorry!  It’s Delta’s fault.  They’re aware.”

I took his hand, and he made an attempt to lightly squeeze it.  A single tear dropped down his cheek.

“Thank you for waiting for me,” I said.  “It’s the best gift you’ve ever given me.”

A few minutes later, I heard someone say, “This is it.”  Then everyone leaned in and started saying goodbye.  “We love you Ken!  We love you!  It’s ok.  You can go.”

NO!  It’s not ok for him to go!  It’s not ok!  What’s wrong with you people?

And before I could really grasp what was happening, my brother died.

Ken waited over 12 hours for me to get to him.  I can’t imagine what kind of pain he went through to keep his promise to me.  But he was still there when I got there, just as he said he would be.  He was my big brother to the very end.

Everyone left the room, and I asked if I could have a moment with him.  I don’t know why I wanted that.  I don’t think I’ll ever get out of my head what his body looked like, lifeless on the bed.  But there was so much to reconcile.  My entire nuclear family was gone now.  There was no one to call who could help me remember what my family did on that trip to Dallas in 1976, for example.  The only memories left were mine.  No one else could fill in the blanks.

As sad as I was to be the last one standing, I was so grateful that my parents weren’t alive to see this.  Unbearable is the only word.

A doctor came in to call the time of death.

“12:42,” I said.  “That was the time of death. 12:42, August 19.”

“Um, I understand,” he said very gently.  “I just have to go through some standard procedure to call it.  I’m so sorry.”

The doctor quietly did his work.  “Is this your father?” he said.

The disease had made him look so old.  “No.”  I began to sob, finally.  “He was my brother.”

At the beginning of this year, I put on my bucket list that I wanted to find love.  I meant something completely different, but as fate would have it, I found out what love is the day my brother died.  Love is not “never saying goodbye.”  Love is waiting for as long as it takes to say that one, last, precious goodbye.

Ken at 13, Janie at 3

(I wrote this post on December 29, 2010, on what would have been my brother’s 55th birthday.  It’s my birthday present to him.)

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