D Day Minus 113: (November 15, 2009): A Wrinkle in Time

Dad and I had a bright idea to surprise you while you were working at Wegmans. Well mostly it was my bright idea. But I couldn’t help it. I missed you. Oh and remember when we were walking in Houston last month by the park near the zoo – you really wanted to show Dad how well you doing. You didn’t say you wanted to make him proud, but you didn’t need to.  I knew.  So that was the other reason why I thought it would be good to surprise you.  Plus, like I said, I missed you—a lot.

Both of us were busy. So it wasn’t anyone’s fault. I was working and trying to brush up on my drawing skills. I was inspired by all the late blooming artists and thought, why not?  You were working, romancing Katie, planning for the future,and just enjoying things we used to take for granted. 

Time was really flying by. But, why wouldn’t it?  Life was good.  The treatment was working.  The trips to MD Anderson were more manageable. You only had to fly to Houston every three weeks.  Your last trip was on the fifth.  You and Katie made the entire trip in less than twenty hours. I even got up at the crack of dawn so you could make the flight.  That was the first time you flew on Air Tran.

When you called to tell me you made it to Houston, you complained, “ The seats were like cardboard.”  I listened with compassion for a second.  I really felt bad the seats weren’t comfortable. But you couldn’t tell that from my response: “The price was right.  Dirt cheap! And you could fly out of Dulles early in the morning and fly back later in the day.”

When I picked you and Katie up at eleven, both of you looked like extras from the movie Dawn of the Dead.  Did I ever tell you about seeing that at the drive-in with Uncle Paul?  It doesn’t matter.  The point was you both looked like zombies.

“Don’t ever try to make the trip in a day. It is too much.” Katie nodded complementing your advice like an exclamation point.  But to be honest, it was a wimpy exclamation point.  I laughed and filed it in under “never again.”

You warned Dad and me not to come on opening day last Sunday. “It’s going to be crazy.” You said it seriously like you were the parent and we were the kids. It didn’t matter because it wasn’t going to happen anyway.  Dad and I spent that weekend in Basset raking leaves and catching up on chores. Besides you gave me a blow-by-blow of the day once you got off work. You called on your way to the Milk Truck, your white SCION, in the parking lot. So it was almost like I was there.

I was riding in the SUV with Dad, covered with blankets and crocheting my latest hat.  We were on our way back from Bassett. I mostly forgot what you said. But your excitement and enthusiasm was infectious. And I was grinning ear-to-ear. 

Dad asked, “Why are you smiling?” I ignored him because I was talking to you.

Dad exited off I-81 to make a pit-stop at Sheetz. You know the Mount Jackson exit, number 273 on I-81. The place where Dad always gets a lottery ticket and you always check out the Made to Order menu for your latest “snack.” You had to go because Katie was calling and you had plans with her plus you were almost to the house in Sterling.
 
After I hung up, I smiled really big at Dad for five or ten seconds and said, “Just because.”

Like I mentioned earlier, I had the bright idea to surprise you. Only the big surprise was that we couldn’t find you.

As soon as we got to Wegmans, I nudged Dad and channeled you, “The floor plan is the opposite of the Dulles store.” I recited all the details just like you told me. You would have been proud.  I did pay attention.

I pointed the bakery out to Dad and left him in the dust with the cart.  I peered into the bakery in search of you. But you were nowhere in sight.  I paced back and forth between breads and cakes so many times, the people in the bakery could have asked for a restraining order. And got it. I was just looking for you. 

Dad finally caught up with me.  He was all calm. Not like me.  I was the epitome of emotions – love, fear, pride, anxiety – on steroids cranked up on high in a Waring blender.

“Text him.” I said to Dad.  It was blend of a whine and a command. “Ask him if he can go to lunch.”

Dad gave me his “damnit Nance” look.  He knew better than to give me too much grief or he’d have me balling in the bakery at Wegmans.  And having shoppers think that he beats me.  Mostly, he knew how much I wanted to see you in your new habitat.  It was just as much for me as it was for you.

Dad hadn’t mastered texting on the Droid so we had to find a place to sit.  I didn't have room to talk though. I'd butt dialed you more times than I'll admit to with my Droid.

Anyhow, we ended up at the pretty nice upscale café you mentioned just outside the bakery.  I order tofu and vegetables that was less than three hundred calories. That way I could eat some cake later and not feel guilty.  Dad got some fish and started to play with his Droid.

Dad said, “My eyes are terrible.” I handed him a spare pair of reading glasses. I kept them in my purse just for these occasions. Then Dad complained a few minutes about the layout of the keyboard on the Droid.


I was afraid we’d have our food before Dad finally texted you.  But it finally happened. He hit send, talked to the phone like that made a difference, then waited for you to text him back.  But you didn’t answer.

I asked Dad if I should ask someone in the bakery to get you. All Dad said was, “If you want.” Of course I wanted.  That was so stupid of him to say, don’t you think?  I wanted him to say “he wanted.” You’d think after being together for over a quarter of a century, your Dad would get it.  Katie was sure lucky. I could coach you on how not to do stupid things.  Don’t you think?

After I made up my mind to track you down after lunch, I got to thinking about you and Thanksgiving and how many different ways I tried to control your holiday. I asked Dad. “Do you really think I’m Rainman?” It was the same time our lunch came. Dad shook his head yes, while he unwrapped his silverware from the napkin. I didn’t say anything. I couldn’t get pissed because it was what he thought.  So I did the next best thing.  I pretended to listen to Dad about what we should do the week we were off for Thanksgiving. 


I was really thinking about you and stupid Thanksgiving. Maybe I did ask you a lot about what your plans were for Thanksgiving, but it wasn’t because I cared if you were in Bassett.  I just didn’t want you to be alone for the holidays.

You got kind of grumpy when I suggested that you come down after work or that we postpone Thanksgiving Dinner so we could celebrate together. You just weren't saying for sure if you were going to Katie’s for Thanksgiving.  After the tenth time over the past few weeks when you said, “Mom, I can figure it out. They’ll be plenty of Thanksgivings. It’s not like I’m dying.”  I decided not to ask anymore, but that didn’t stop me from thinking about it.  Isn’t that obvious?

After lunch, I asked a lady in the bakery if you were in the back.  I said I was your mom.  Tears welled up while she looked for you. I wasn’t sure why.  But they did.  She found you within two minutes and said you’d be down soon. If she could have warped you to me, I think she would have. You said that you had a good team and that everyone was very supportive. I saw it in action.
 

You walked toward me from the back of the bakery. You moved in slow motion, but each step was like stop frame photography.

• Frame One – It was today, you were at Wegmans, clad in black Dockers and a white Wegmans polo, clutching a clipboard wearing a Wegmans hat. A little hint of a smile sneaking from the corners of your mouth.
• Frame Two – It was 1987, you were on the path at the Honolulu Zoo, running toward me in your gold tank top and blue shorts, with your fire-engine locks blowing in the wind. A carefree smile infecting all those on the path.  
• Frame Three – It was back to now.
• Frame Four – It was back to 1987.

At least a hundred frames alternating, between today and 1987, passed before you made it to Dad and me.

Remember the book, A Wrinkle in Time, when Meg and Calvin came back to see their mothers one last time before they went to rescue Meg’s father.  That is what it reminded me of.  I could see you through time, but you couldn’t see me.  You and Morgan loved the book.  Fiction was one thing, but reality or surreality was another.  Frankly, it was sort of freaking me out.

You and Dad talked about your day almost in animation. You were all about setting up production schedules and getting ready for the onslaught of activities you expected with the holidays. 

Did you know you really look a lot like Dad?  And you both get excited about the details?  I was mostly quiet taking in the moment.  I tried to enjoy the time like a celebration. Here you were talking shop with Dad.  Things were going smoothly at work. 

My mind should have been full of all your possibilities. Only thoughts of your grand entrance in stop frame kept sucking me back.  You looked tired.  It was in your eyes. Maybe it was from all the work and not getting rest, but your eyes were a little red on the lower rim.  Maybe there really was a Wrinkle in Time.  Maybe there was a man with red eyes just like in the book. A man who tried to take over your power and give it to IT—the main dude from Central Central Intelligence.  Maybe IT from the planet Camazot was really the cancer coming back.

 The only thing I knew was that I didn’t know.  I had my suspicions and it started with a Wrinkle in Time.

D Day Minus 130: (October 29, 2009): Time Flies (When Life is Good)

“It’s working.” You’d said it once, but that was the third time I made you say it. Morgan laughed in the background, probably in the waiting room by the fish tank across from the vending machine. The one where I bought the Diet Dr Pepper that I couldn’t drink because it tasted like cough syrup last week.  You know in the waiting room at MD Anderson Phase I Clinical Trials. You thought it was so funny.  I threatened to never buy you another pack of Skittles— the cure all for everything.  Well it used to cure everything.  But that threat, only made you laugh harder. 

Anyway, I waited and waited all day for the good news.  I even forced myself not to call you every ten minutes and go all ‘Rainman’ on you.  It was just after noon in Virginia, so it was a little after eleven in Houston. I was in the middle of some analysis of my latest technology metrics. Well not really – because in order for me to analyze something my frontal lobe had to be engaged.  What I was doing was more of an instinct, which was actually a good thing.  Because mentally I was with you and Morgan in Houston at MD Anderson:

• walking the SkyBridge, dodging the golf carts filled with patients too sick to walk and staff too busy to walk;
• eating at the WaterFall Café and Café Anderson;
• waiting with Morgan while you got scanned and tested; 
• sitting in the chair opposite Morgan with you in between us in the hospital bed, while the nurse monitored your blood and vitals during treatment; 
• taking in all the other sights like volunteers in their blue striped seersucker jackets manning the Jolly Trolley handing out coffee, tea or juice to any and all; 
• watching the juxtaposition of the new cancer patients in the main lobby with their new fears and hopes (looking a little lost and confused) next to the old patients with their old fears and hopes, navigating the maze of carpet maps, buildings, and elevators like professionals; and  
• waiting with both of you for test results in the waiting room, while we talked about food, Wegmans, Tony Horton and P90x, and whether I should start Morgan's latest workout, Shaun T’s Insanity, after I finished with P90X.
  

I hollered, a happy holler, loud enough for someone two offices down to stop by just to make sure I was okay. I gave him two thumbs up and a big smile. But I already knew the trial was working. I knew it the weekend after our trip where we almost didn’t catch the plane. Does “Holy Hannah” ring a bell?

Do you want to know how I knew?  It was in your eyes. They were bright and sparkly like the time you got Super Nintendo for Christmas.  Remember how excited you were? You didn’t expect the game because I’d gone on and on about Santa not having many toys and he’d have to share with other kids, so you shouldn’t expect Super Nintendo. When you unwrapped it, you danced up and down.  You even screamed like a school girl.  Don’t worry your secret is safe with me. 

Morgan caught the Super Nintendo fever too. That Christmas break, she didn’t leave your side. She was your one person Super Nintendo fan club. Remember how you explained the intricacies of  the game to her.  Sort of like how you explained the intricacies of bread making to me now.  Did you ever know that you were Morgan’s hero?  I’m singing it in my head right now and thinking how much I annoyed you – sometimes.

I know I digress, but I just wanted to let you know how I knew you were going to be okay.  It was in your eyes – your beautiful green eyes. Hey, I think you have my eyes. Does that make me stuck up for saying your beautiful eyes?

So mostly you eyes gave it away. But, your energy level was another clue. It was higher than it had been in years. Two or three times you worked ten or eleven hours at Wegmans and came home to work on plans for inventory and how much bread to make. And that was nestled between our trips to Houston. When you worked all those hours, I asked if you were doing too much and if you needed to take it easy. You said, “The store in Leesburg is opening next month and I want to give my team the tools to succeed with or without me.”  Last week you even bounced down the stairs, like Tigger, and said, “I feel pretty good.”  

The final clue was how fast time went by the past two weeks.  It compressed and literally flew by since the trip before last.  I know somehow we went to Houston, worked full-time, and managed to stay in touch with everyone – you with your Wegmans entourage and me with the Utah entourage. The only thing I remember was hope and going with the flow. 

Don’t you think time expands and goes really really really slow when everything hits the fan? Remember how long it seemed before we got an answer on the trial? Remember how long it took to figure out the first round of treatment – way back in the beginning – just before you graduated from George Mason. Remember the year you were on Interferon – it was nearly an eternity. I felt it every single hour of every single day you were on it too.  Time was dragging then. Now it was flying. I guess it does, when life is good. 

On Haitus until Christmas Break

Zebra friends and D Day Minus Blog Followers,

I will be on a break until after Christmas. I will finish (or nearly finish) my labor of love during my Christmas vacation.  I've missed writing and sharing our story.  I've been down with a bug for nearly a week. Now I'm playing catch-up at work so I can take some time off for the holidays.  C'est la vie.

I hope you are finding something to appreciate every day during the holidays.  I know it can be hard with all of our daily demands and the dramas where we play center stage.  I started a daily tab of things I appreciate. I'm even using a lap counter to keep track. It helps me stay positive and not dwell on how much I miss Greg.

One thing, my Greg taught me was to find something to appreciate whenever possible -- especially when you don't think there is something to appreciate. :-) When you do, that is when the zebras and butterflies come out to play.

All my love,

Nancy

Sick

Hey all,

This is Morgan posting on behalf of my mom. She is out sick with the flu right now but will return to finish up the blog with about 5 more posts to go. She wants you to know she hasn't forgotten about any of you and is looking forward to sharing the rest of the story with you when she is well and able.

Much love,
Morgan

D Day Minus - 144: (October 15, 2009): Chicken

I was nearly eight hours into my first day of your Clinical Trial. But it felt more like three or four days. Time at MD Anderson always expanded. Don't you think? It's like we're split between two realities -- Virginia and MD Anderson.  In Virginia, sometimes we forgot the cancer. Here, at the hospital going through another treatment,  you couldn't. Maybe it's because we were always waiting for an answer. And the stakes were always so high. I don't know. But all we had to do was look around us, here in the hospital, to know -- we weren't that special.

I was cold, like always. This time I dressed in layers and had my leather jacket. The room was dim because your head hurt a little. Even then, you offered to turn on the lights so I wouldn't be bored.  You didn't have to worry. I had a zeal of zebras disguised as an iPod, a Kindle, and a NetBook.

In between hourly vitals and blood draws every two or three hours, you'd doze off or ask what time it was so you could eat. Then you'd talk about all the food you wanted to try in Houston. Every once in awhile you'd start a text rampage with your Wegmans posse or Katie or your friends from George Mason. You didn't watch TV because they didn't have the Food Channel or the History Channel. So what was the point?

It was nearly five and you were dozing off again, so I walked the Sky Bridge. Partly for a change of scenery but mostly out of guilt because I couldn't do P90X. I didn't want to get fat. For lunch alone, I ate both of our jalapeno corn muffins and a three vegetable special. I figured that was nearly 1000 calories if you counted all the Dentyne. Besides, walking and burning calories was at least one thing I could control.

I "relistened" to Bruce Lipton's Biology of Belief on my iPod. Plus I mastered the obstacle course of doctors, patients, and crazy cart drivers who honked to clear a path.

Remember the book? Remember how much we talked about beliefs, the law of attraction, the The Secret, and all the connections between your thoughts and cells. But we stopped a few weeks ago. Or maybe I did.

I thought that you'd think, that I thought the cancer coming back was your fault. But I didn't. Mostly I didn't want any of my doubts to cloud your beliefs because I was scared. The only thing that mattered was how you felt and what you believed. Not what I thought or believed.

The more I listened to the Wisdom of Cells and the more I walked, the more I wanted to ask what you thought. And come clean about what I thought. This morning, I could have mentioned it. You asked, "What are you reading? Is it good?"

I lied and said I was reading a book on measuring the value of information technology and droned on about it long enough to make you close your eyes. Really, I was bouncing between two books on my Kindle. One was The Energy of Belief – Psychology's Power Tools to Focus Intention and Release Blocking Beliefs, by a Licensed Clinical Social Worker, and PHD.  The other was The Human Antenna: Reading the Language of the Universe in the Songs of Our Cells. I didn't say because I was a big fat chicken.

I wanted to tell you just because we don't know how to measure or monitor the role that thoughts and beliefs play in our lives, with all the scientific data, doesn't make it any less valid. It only means, we haven't figured out how to measure it -- yet.

About the time I got comfortable with my logic, you called asking for something good to eat -- whatever that was. I brought you some pudding. I teased you about dressing up like Chewbacca at Wegmans for Halloween and getting fake fur in the dough. But we didn't talk about what I was really thinking.

I was chicken. A big fat chicken.

D Day Minus - 145: (October 14, 2009): Holy Hannah

“What is the deal? ” You asked with a heavy emphasis on is along with the obligatory, “This sucks.” You’d said it at least thirty times since we got on I-95. And at this rate, you’d say it another thirty.  But it did. You know –  suck. It sucked big time. And I had the feeling it was going to get even suckier as I turned on the windshield wipers full blast blurring the sea of red tail-lights.

A white box truck, the kind they thought the D.C. sniper drove, wasn’t paying attention and nearly hit my little Miata. You know what I said, but I won't make you relive it. I sighed hard, took in a deep breath, only to catch a whiff of your recycled lunch.  

“What’d ya eat?” I asked rolling down the window, not caring if the rain hit me. You feigned idiocy and laughed. Hard!

I laughed too, only a little. But I really was annoyed. I didn’t have any place to go and Miatas are dinky little cars.

At least that broke the tension. And man alive, there was a lot. 

Playing center stage in the matinee in my mind, was all the worse case scenarios – We’d miss the plane. We wouldn’t catch another plane. They’d take you out of the trial even if it was working. We’d get to BWI just in time to see our plane taxi down the runway. We’d never get another flight out. We’d be stuck in this traffic until tomorrow morning. There'd be another wreck. I’d get fat because I didn’t do my P90X. I’d run out of Dentyne. You’d never make it back in time for the Leesburg Grand Opening of Wegmans. We’d run out of battery for our phones. We’d run out of gas. We'd run out of food. We couldn't find a bathroom--ever. It didn't matter if I was full of Diet Mountain Dew. It just didn't. All that was playing out. And I hadn't even finished the first act.

You texted Katie and your Wegmans posse, while I started the second act of my worst case scenarios. Then we got a break in the rain and traffic. And coasted along at a whopping thirty five miles an hour. We even dared to hope that we’d make it to BWI. That's when I got to talking about Hannah and how she always helped me out. She's always been there when I needed her. Remember?

“Do you believe in my guardian angel?” I asked, but didn't wait for your answer. 

Then I told you all the times Hannah just made everything work out.  Like the time I locked myself out of my house when I was little.  The door was locked, I knew it was locked. I’d tried to open the door twenty times. Then when I’d given up –  the door opened.

“Say you believe.” I said, but you only nodded a half-hearted nod. “Say you believe.” I said, taking my eyes of the road, so I could see the green in your pupils. “Say it.”

“I believe.” You said eyes fixated on the Garmin GPS, so I'd get my eyes back on the road.

“Do you?” I downshifted in concert to another wave in the sea of tail-lights. “Or are you just saying that so I don’t kill you on the way to trying to save you?”

“I believe.” You half-smiled straightening out the creases in your jeans. “But we only have 65 minutes until the plane takes off."

“I believe too.” I said. “Let’s just keep saying what could go right.”

“You first.” You said, eyes center front, still tracking the Garmin GPS.

“Okay. Okay.” I said imagining some good scenarios. “I got it. There won’t be a line for Security. Or they’ll let us through because we’re running late. The plane may be delayed. Or....”

We imagined all the best scenarios that we could. Sometimes it was hard, because we weren’t moving. And to top it, Garmin took us off track a little. But, we made it to BWI.  Just barely. We got long term parking a half an hour before the plane was supposed to take off.
 
It’s okay that you flipped off the first bus that left us in long term parking. Another one showed up a minute later. It’s okay that the first line in Security was long. Because when we told TSA agent about our saga, he sent us to a different security line. And we got through it fast.


It's okay, you got selected for a random body search. The search was fast and you could put you shoes on at the gate. It's okay that we’d never flown on Southwest and were confused when the cattle troughs to open seating – opened.  It's okay that we got split up, because I got on first and saved you a window seat – your favorite. 

You stuffed your duffle bag in the overhead and I moved to the aisle so you had the window seat. We sat down. And sighed long and hard. We had to. We had to erase nearly three hours of rain, wrecks, bumper to bumper traffic, near misses, full bladders, worse case scenarios, and recycled lunch.

I said, “Holy Hannah.” It was the only thing left to say. And you nodded – like you meant it. This time.

D Day Minus - 149: (October 10, 2009): Stupid Phone

I circled Dulles Airport in search of the stupid cell phone parking lot for twenty minutes – only to end up in some industrial park where bad people dump the bodies. I didn’t care. You were coming home. That is if you still wanted to. I wouldn’t have blamed you, if you didn’t. I’d been a drama mama most the week. And it wasn’t like you were on a trip to Disneyland. You were in Houston to start the BrAF Clinical Trial. So while you traveled light with Katie and carry-ons, I stayed behind with more emotional baggage than would’ve fit on a DC-10. Frankly, if I would've had a choice not to live with me, I would've left myself.

On Tuesday, you called me at work on the stupid phone with the news. “I can’t start the trial until Friday after I go to Clinic. I can't get to Clinic today. There was a little mix up. They can't fit me in. Thursday is the next day for Clinic. So I have to stay an extra day or two. I can’t fly home on Friday because that is when treatment starts. I’ll probably have to fly out on Saturday. I don’t know for sure yet.” You were walking I could just tell—probably on the Sky Bridge or between windows where you got stupid phone reception. 

“What?” I said loud enough for me to shut my office door. “We told the Scheduler that you were flying in. Not staying. Didn’t we? I asked at least ten times when I was there. Both you and the Scheduler were annoyed when I asked. And kept asking. Right?  Didn't I say we needed to make sure we got the appointments scheduled because we needed to work around our schedules?"

You signed on the other end and rolled your eyes. Frustrated.

"Where's Katie? Is she next to you? Can she hear?" I asked even more frustrated.

"Yes." You said, voice even. But I knew you were forcing calm out. Meanwhile, I felt like psycho meddling mom. I didn't care what you or what Katie thought at the point.

"Have you called work? You're supposed to work on Saturday. Katie’s supposed to work on Saturday, too."

“I know.” You said, “But what do you want me to do? What do you want me to do?” 

I was silent, figuring out the next volley. What I wanted you to do and what I wanted to say were two different things.

“I wanted you to kick someone or some things a** and make the cancer go away. I wanted you not to be half a continent away. I wanted to take it all away. I wanted the treatment to work overnight. I wanted the Scheduler to pay attention. I wanted not to get so mad. I wanted not to be so afraid. I wanted to be there. I wanted. I wanted. I wanted. Anything but to go through this with you.”

What I actually said was a snotty. “Let me know when you know.” It slipped out just before I hung up the stupid phone— knuckles white, cheeks hot, knees weak, stomach knotted.  

Ten seconds later, I was ranting – more like hyperventilating—to Dad on the stupid phone. The more I explained how wrong it all was and that this wasn’t fair, the more my voice cracked and tears ran.  

Dad was all, “Let Greg handle this. He’s a big boy.” And “Nance, you need to calm down, you’re making it worse.” That damn stupid rationality pissed me off.  Really, you know and I know that rationality and emotionality are like oil and water. They just don’t mix – ever, evER, EVER.  

I tried to work, but couldn’t concentrate. So I faked it – glazed eyes checking email or open documents that made as much sense as all those black and white CT scans of yours.

I grabbed the stupid phone along with the calling card twenty or so times. But five was the number of times I actually called. 

“The Scheduler is not at his desk. Please leave your name, number to be reached, the patients name and ID, and he’ll be sure to return your call.” Was what I got. But, I didn’t leave a message. Instead, I said a few bad words under my breath and flipped off the stupid phone. 

As soon as I left work I called the Scheduler on my stupid phone from my car right, there in the parking lot. My little Miata was vacuumed sealed so some insane part of me reasoned that I would let the Scheduler have it whether I got him or voice mail. Anyway I got the voice mail – AGAIN. And I went on a full on rant that went something like, “You can’t mess with people’s lives like this. We TOLD you we wouldn’t be staying in Houston and that we were flying in. This isn't a game. My son could die. We need to get him started in the trial.  He needs it to start now. I want him to live.  I want him to live. Don’t you get that?” As soon as I hung up, I threw the stupid phone really hard on the passenger floor with a thud. 

The silent echo punctuated my pain for ten seconds. Then I wanted to take it all back. Erase the stupid message. I knew this was all new, a TRIAL. Duh! MD Anderson was just getting it set up. There were no guarantees. I knew that. But, like I said, rationality and emotionality don’t mix. And I can be an idiot. Then I got to thinking about the next time you or I’d see the Scheduler again. Then I panicked even more – if that were possible. You’d see him the next day and I’d see him next week. Crap, Change, Cancer, Catastrophe came to mind. Then I imagined wearing my Scarlet Letter, “C”, for Crazy. "C" for Charming was dead to me. 

I told you part of the epic drama, the next day. That was after I fished for information on the Scheduler and whether he mentioned my call. You assured me, he didn’t say anything and you were going to start the Trial – just a couple of days later. I guess Cancer makes for a lot of Crazy. 

Dad and you worked out the details and left me out of it. Did Dad tell you I was losing it? You wouldn’t say. But I asked. At least you kept me in the loop at a distance. If not emotionally, then geographically.  I even tip-toed around you through a couple of calls to Katie.  But you figured that out.  Didn’t you? 

The rest of the trip, you were cordial – another “C” word.  You’d give me basics about the treatment and what you were doing. Things were going well.  It was all working out. Katie is keeper. But, that wasn’t enough. I was used to nuances and how you felt.   

By Friday, I realized all my worst fears about this trip – not knowing the details, changing plans, and falling apart.

But this morning I was much better. At Bush International, you called my stupid phone. You said "Mom, I love you. You're not crazy. I really do appreciate you and everything you do. I think the treatment is working. I can't wait to get home." You'd said all this twenty times before. But this morning I was calm enough to receive it. Finally, we were on the same wavelenghth and communicating – almost like magic.

There still was distance. Only now, it was geography. The emotional distance was my fault. I smiled, just a little, all by myself in a scary industrial park with who knows how many dead bodies. All because now I knew a secret about distance and connection. The only thing left was your call and my stupid phone to ring. And it did. 

                                         

D Day Minus - 154: (October 5, 2009): The Baton

I chauffeured you and Katie to Dulles around three in the afternoon. You sat beside me in the passenger seat, eyes front, fidgeting with the grab handle of the SUV. Did you think holding the handle tighter would get you to the airport any faster? 

Katie sat behind us on the hump. That way she could hear what we were saying – way in the front. She kept checking her purse for something. I think it was her identification and her phone. I knew it wasn't boarding passes. You had them. The only thing for sure was – she was nervous. Probably about flying or the treatment or running off to Houston with you. It didn’t matter what it was – she was allowed – on so many levels.

 

I didn’t say a word. I’m sure you’re glad I kept my trap shut about that. Instead we talked a lot of food in Houston and how big MD Anderson was along with the infamous Waterfall Café in the Mays Building. Then we were silent. Each of us absorbed in our own private realities.

I thought about this day as I drove in the pack of Washington Flyer Cabs, Mercedes, and BMWs and other high-end cars. I noticed there weren’t too many clunkers in Northern Virginia and my latest Diet Mountain Dew was almost gone.  Mostly I thought “it was finally here.”  It was the big travel day for our one hope—the BrAF Clinical Trial. And finally for two reasons. First, the two weeks waiting to start the trial, seemed like eons. Second, you sort of Rainmanned me. You’d called me two or three times to confirm when I’d be home. Then you called me a couple of times on behalf of Katie. She wanted to know about the logistics of flying since she hadn’t flown in  awhile. “Would her nearly empty bottle of saline solution for her contacts make it through airport security? What is the weather like in Houston this time of the year? What should I pack? Should I bring my computer?"

You had an early shift at Wegmans. You were so excited about the Grand Opening next month and being there for “your team.”  “Oorah,” with a Marine bark is what I’d thought every time you mentioned it. And that was a lot.  I didn’t say anything because you’d think I was giving you crap. I wasn’t. I loved that you were so excited.

Anyway, I was trying to get in as many hours as possible. I was going to miss a lot of work the next two weeks. I was your travel buddy for weeks two and three of this round. I wasn't complaining. Just stating the facts. I’d do anything as long as I could be there with you. Still I was on edge.  

This morning at work, I over compensated in organization and efficiency because that was the only thing I could control. Copious amounts of contraband gave my charade away. I went through four of twenty-four once – ers of Diet Mountain Dew along with nearly two plenty packs of Dentyne.  Your voice nagged each time I threw away an empty.  Something about diet drinks causing cancer. I shut it out by blasting my iPoD. I listened to Ludacris Get Back when I heard your nagging.  So “You Get Back.” That made me smile and relax a little. But every now and then my stupid nose would tingle, which was a tell tale sign, I was on the verge of tears.  

Honestly, I wanted to go so I could be nosey and know everything about your treatment. Then I wanted to stay so you and Katie could have some time together. But now, it didn’t matter. I couldn’t change anything now, because what’s done is done. I could’ve booked a ticket. I could leave work. Work would understand.  

On the other hand, part of me was relieved to get a break from traveling because if I didn’t work, I didn’t get paid. And you knew that was always in the back of my mind, whether I said it or not.  Still part of me was jealous Katie was going to be the one with you when you started the BrAF trial.  Plus I wasn’t sure how she’d react as the primary “go to” person if things, you know, “went south.” I didn’t want to pinch you off from Katie and control the situation, either.  I wanted you to live your own life and know that I was always there on the sidelines.  

Still, I had a heavy heart about not being in Houston for this trip. But, Dad was right. I needed a little balance and you needed to do some of this on your own. This was something you had to figure out with Katie. But I bounced between relief, a little hate, and sheer unadulterated fear about the whole trip. Talk about Dr. Jekyll and Mr. Hyde. What a dichotomy? But, you know how I am.  We probably talked it death at least thirty times.  Because when it came to this, we had diarrhea of the mouth. You said, “Come. I don’t care. You’re my mom.” You meant it. But you needed your space. You did. 

Route 28 was pretty clear so we made the trip to Dulles in fifteen minutes. I patted your hand on the tan console just before dropping you and Katie off.  Just like I had since you were little.  I don’t think Katie noticed, but you wouldn’t have cared.  I opened up the back hatch and you pulled out Katie’s and your carry-ons. Katie wore as much zebra as she could beg, borrow or steal. That made me smile. I hugged you and said the usual. Then I hugged Katie and said, “Have fun. Be careful. Take care of yourself. Take care of him. I’m trusting you.” All in one breath. 

D Day Minus – 17573: (January 26, 1962): Prologue—One Possibility

I’ll do my best to remember Eternity. It was such a long time ago. So much has happened to make me forget. And you know the thing about Reality – by the time you can talk, you totally forget Eternity. Then you spend the rest of your time in Reality, trying to remember what it was like. You know? Before.   

We were hanging out with our Cluster in Eternity enjoying non-life. Dad was there. Morgan was there. Katie was there. Aunt Janiene was there too. We had different names. Dad was Ineffable – mostly because he was. He chose that name because it meant “too sacred to be uttered or spoken.” That was kind of dumb because in Eternity, we didn’t speak. We didn’t smell, taste, hear or see for that matter. We had something better. We knew and we felt. Not like in Reality, where feelings can be hurt. What we felt here in Eternity really was ineffable. 

I was Hannah. You were Michaelangelo. Morgan was Lily. Katy was Hunter. Aunt Janiene was Jennah – mostly because it rhymed with Hannah. She wanted part of my name to be even closer to me. Like that could make us any closer. But that was okay, because we were supposed to feel good. And if having part of my name made Jennah happy. So be it.

You, Jennah, Hunter, and Lily were still one and carefree. Not like me. I was mostly carefree, but some of Reality was getting mixed in with me. It happened each time I tried on my new physical body. Hannah was still there – but not. It’s just strange to know you’re going to Reality and leaving the biggest part of you behind.

I had to go. Because that’s what's supposed to happen. It's part of the circle. I tried to get Ineffable to clue me in. Because part of him went to Reality one hundred and eighty one days ago. Ineffable stayed true to his nature and thought to me in riddles. He wasn’t supposed to let me know. I had to figure it out on my own. I knew that. But sometimes I forgot – probably because Reality was getting in me.

Part of me really did want to go. But Reality confused me a little. It would happen to you – when it's your turn. And it would be your turn soon. I had to go first because you chose me to be your physical mother. And I chose you to be my physical son. And Lily would be your physical sister. And Ineffable was going to be your physical father. We all chose each other.

We didn't know what Reality was going to be like or have any plans. Just that we would do our best to help each other remember – Eternity.

You knew Hunter was part of you. I knew Jennah was part of me. We had so many others that were part of us too. We knew we'd see our friends from Eternity. Somewhere in Reality. We'd know by what we felt. It could be love or hate or something in between. But if we had a feeling about someone in Reality, they were our friend in Eternity. The trick was to see them in Reality like they really were in Eternity. Then we were getting closer to who we really were – in Eternity.

We didn't want Reality to be easy. We didn't want to have all the answers. We didn't want material things given to us. We didn't always want perfect health. We didn't want everyone to love us automatically. That would've have missed the whole point and the journey. We wanted the obstacles. We wanted to want. We wanted to get better. We wanted to figure it out. We wanted to grow. We wanted to do our part to expand Eternity.

Most of all, we wanted to remember. We wanted to remember what it was like in Eternity. We wanted it so much. It was our one and only promise. We promised each other that we'd make each other want to remember. No matter what. Even if it hurt in Reality. Even if.

Just before part of me left to be born in Reality, I felt a surge of love from our Cluster. Followed by a sharp separation from the bigger part of me – Hannah. Then thoughts, followed by echos, followed by whispers: "REMEMBER WHO YOU REALLY ARE. Remember who you really are. remember who you really are. remember."

Next, I saw bright bright lights and physical faces with my own physical eyes. Right here in Reality.

D Day Plus 231: (October 25, 2010): Now What?

“Now what?” That dominated my thoughts since I posted my first D Day Plus entry yesterday. You know and I know that one day changes everything.  And I changed everything with your story by jumping ahead to blend our story to here and now. Yes, I had a general idea where to take it.  But from the first posting last April, I quickly learned an entry was never a sure thing until I hit the “Publish Post” button. 

“Now what?”  Had really planted its sneaky syllables into my psyche like an uninvited guest over the holidays.  Those two syllables reverberated in my left ear and out my right ear. Then in my right ear and out my left ear like a figure eight or maybe even like infinity. So there I was trying to get unstuck, planted on your tan brown recliner on Dad’s side of the bedroom. And it wasn’t happening for me.  I needed a distraction—Big Time.

Usually work was a good distraction. That was a no go – at least not for a few more days—because I was still under doctor’s orders.  So I did what I did best, got even more balled up in thought and emotions.  

I tried to push through the wall of resistance. I had to. I was on my own self-imposed deadline. You know how I always have to add some stress even when there is no earthly reason for it. Even Microsoft had an opinion. That damn Microsoft Word stared me down with its blank page, all self-righteous and such. All because my word well had gone all but gone dry.   

Now questions plagued me and I didn’t have answers.  “Should I share the rollercoaster of emotions I just went through with my surgery or just do the condensed version with lessons learned – sort of like a post mortem they do in the military?  Should I pick up where I left off before the whole surreal bevy of bowel drama took over and gloss over my journey? How do you really talk about eternity and hope for the here-after without bringing in the God Squad and all the versions of what’s true or not; what’s right or not? How do you compare a bowel obstruction to cancer? How do you show joy and talk about hope when the knee jerk reaction about cancer, death, and pain is to run the other way bellering like a baby?”

 

By now, I knew the best thing to do was some type of distraction and wait for an answer –or inspiration. But what? I couldn’t do Zumba, yoga, or clean. I was sick of movies and “on demand” television.  I was even sick of watching Lynda.com training.  I needed to get out of the house.  

Dad says I’d never leave the house if I didn’t have to. He calls me, “His little Hermit." Or "Howard" (as in Hughes).  Don’t you think he’s a liar? The fact that I needed to get out of the house was proof.  Don’t you think? At least I don’t have agoraphobia. Well maybe a little when I drive over bridges or overpasses. Remember how I'd freak out and focus on my breathing, driving on the big tall overpasses from Bush International to our hotel of the moment, on one of our endless trips to MD Anderson? 

I decided to go for a walk because I was thinking about how fat I was getting just lazing around on your chair. So instead of being agoraphobic, I’m probably more fatophobic.

The sky was blustery and ominous looking, like it was going to be all cold outside. I didn’t check the thermometer by the patio or Weather.com like you and Dad would have.  I’m more visual, you know. Anyhow, I got all layered up – sort of like Nonook the Eskimo. I’m sure you’re thinking that’s a surprise and smiling – given the fact that I’m always cold.  

I wore my flat suede boots.  The ones I bought in NYC with Aunt Janiene when my shoes were giving me blisters and I didn’t want to go back to the hotel.  Remember those were my "go to" boots last winter in Houston.  I also had on my stretchy stretchy leggings (cause of my swelly belly), and my new fake down vest with a pocket for my iPod. 

Oh, and I even had on one of the hats I crocheted during your appointments and hospital stays.  This one was made with the infamous magic circle. Remember? That’s where I’d use a slip knot sort of way to start the first round of the hat to make the hole at the crown really really tiny – almost invisible. 

I was so happy when I found a clip with instructions on YouTube. It was a few days before last New Year’s Day.  You were in the hospital at MD Anderson because you had severe abdominal pain. The nurse just gave you Morphine. I teased you about being thankful for good drugs. You shook your head and gave me a smile that meant, “I’m glad you’re here even with your stupid comments.”  

I didn’t want to bug you with the sound, so I used my iPod earbuds to plug into my Zebra-skinned Netbook. I’d watch the clip, try to make the ring, then watch it again. You asked what I was doing after about the fifth round of trying.  I went on and on about the marvelous magic ring for at least three minutes.  Your eyes glazed over.  I wasn’t sure if it was the Morphine or me. You only said, “I got it. It’s okay.” But did you ever really get the significance of the magic circle?  Don’t lie. 

 

I took the trail behind our house intent to walk to the traffic light on Algonkian Parkay and Cascades Boulevard. Autumn leaves were falling to my right and to my left. And each time one fell, you can bet I double-checked to make sure it wasn’t a butterfly that you may have sent my way.  No butterflies, just stupid autumn leaves—a whole lot of dead, beautiful, colorful, stupid, stupid leaves. 

By the time I got to Algonkian Parkway, I was all sweaty.  You’re probably thinking I should have checked the temperature. But I didn’t, so I stripped. First it was my fake down vest. That helped a little, but not enough. Then I stripped off my infamous magic circle hat. And boy I had some major hat hair going on. I almost put it back on. Instead I hoped I looked really sick to lower anyone’s expectations driving by.   

At the traffic light where Cascades Boulevard and Algonkian Parkway intersect, I stepped on the big crack. It's the one in the sidewalk section where you press the oversized button to cross the street. I did it, because I always did. Remember how I made you, Morgan, Dad, and even our old dog Champ step on it before being allowed to turn around. It was the law. Now it was more of a habit. 

As soon as I turned around, I got to thinking about the chain of pain and how emotional pain was the strongest link in it. Then I got to thinking about what we always talked about related to beliefs, thoughts, emotions, and feelings. A car honked and I ignored it. I didn’t want to lose momentum. 

Remember how we’d talk about changing our thoughts or perceptions in order to find a way to feel better. It was the best thing we could do and the only thing that we had control over. In fact, we’d had a lot of conversations about it on the very patch of trail I was on.  

All I ever wanted was to be closer to you, especially since your body caught up with your soul. After the past couple of weeks, I was finally starting to get it. It took some drama, but like we always said, "Words don't teach. Life experience does." 

As long as I was feeling good and appreciating life - even the sucky things, I felt closer to you. By sucky, I meant watching your pain with that invader - cancer. We both knew thoughts control emotions and emotions spawn feelings. And I had the power to control my thoughts. It's just a matter of training myself a little bit every day -- by choosing the best feeling thought in the moment.

I'm starting to believe. So please let me know if I'm getting it right. If I find calmness and appreciation, then you'll be there. Because that's where you hang out. Right? I think so, because it happened on the bathroom floor that night I thought I was dying. It happened at the hospital whenever I stopped with my pity party. It happened a lot of other times -- as long as I didn't get ahead of myself and found a way to feel better about the reality of the situation. Even if it was a silly distraction. Right? It was really happening. Right? 

So if I can change the way I think and what I believe, then faith comes and in some cases knowing? And if I can do that, then maybe I am a Superhero? Maybe you're a Superhero?  Maybe we're all Superheros. Only most of us our too stupid to believe it. 

I’ll try not to be a broken record. But I think I'm getting it. Like we always said, "A belief is just a thought you think over and over again, and if you change your thoughts, you can change your belief."

I'm not saying we're all Superheros with capes and kryptonite. But we do have more power by paying attention to how we feel every minute and finding better thoughts. Right? You always said you get what you give. So if I put out positive juju, then I'll get more back. Right?

Believe me, I'm not saying that I think you went through cancer or the physical pain to teach me or anyone a lesson. I think it happened because of timing and where you were. It did make us live life a whole fuller and really made us pay attention. Mostly it made us find a way to be positive -- mostly. It made us know unconditional love -- definitely. And best of all, it reminded me of Eternity and a lot of things we both forgot. 

One more thing, I'd like to know. "What is Eternity? And why can I feel you?" I don't expect an answer yet. But I'll tell you what I'm thinking. I know I'm not getting the whole story, but humor me. Because I won't know for sure for awhile. But here's what I'm thinking. Eternity is where the thoughts we think go hang out. And thoughts we think are connected to our soul. If the thoughts we're thinking make us feel bad, then we're out of sync with our soul. And we aren't being who we truly are. Right? So, if we feel good, we're on the right track. If we don't, we're not. We just need to change our thinking. Right? But because we're always growing, it's okay if we're not always skippety do dah happy with birds circling around our heads. Because it gives us clarity.  Right? 

So you know what you don't want. And knowing what don't want gives you best clarity of what you do want.  That makes Eternity grow because we're trying to get to what we do want. Right? We are all in this together whether we like it or not. Right? But when we like it and don't get to wrapped up in being right and making the other person wrong then we're on the right track. Right? And in Eternity, we are all loved. Right? And everything is okay because we never get it done. Right? So we get a lot of "do overs" and chances to be creative. And most of all we get to choose what we believe. Right? 

All those questions and a little clarity came on the trail in woods behind our house. Almost the same place you and your friends got all that poison ivy when you were in grade school. Anyway I stopped with the questions, because I was getting all tense. And if I was right, that meant I was getting further away from you and Eternity. So I listened to some songs on my iPod, to give it all a rest. Well mostly me. Wasn't it was obvious? I was having a hard time keeping up.

 

I dropped off my fake down vest at the house so I could walk the pond loop without feeling like a pack mule. While I was home, I got my dapper straw hat (the one I bought at the swap meet when we all went to Hawaii to take you to your final physical destination). I needed it to hide my horrendous hat hair. Plus I guzzled a whole lot of water because I didn't want to get all plugged up again in the bowel department. I'd learned my lesson.

Two minutes later I was walking the loop around the pond. More leaves fell to my left and right and like before I double-checked. Still no butterflies. I listened to some more random songs and tried to get the words right.  The distraction worked for a minute.  

Then my fears crept in. I wasn't sure whether to share what I thought on D Day Minus for fear of people thinking I was off my rocker. Then I got to thinking, this was your story, my story, and our story. And whether anyone believed it or not was their choice. Because that's the beauty of it all -- you get to choose what you believe. I only needed to start at the beginning, remember the joy and exhilaration of the ride, and relax. Because if I did, you'd make sure it all worked out. You'd guide me to the best moments, the right words, and the perfect sequence of my thoughts. 

I think you agreed too. Because a medium sized orange and black butterfly came up and played with me. And we danced — just for a moment. Then I knew "Now What?" 

D Day Plus 226: (October 20, 2010): Chain of Pain

“How’s the pain?” That was the question of the day. And I was a little sick of it. The first time it came up was as soon as Dad got out of bed and nearly tripped over your tan brown recliner. The second time was around eleven when I called Morgan at work to ask her to let your posse of blog followers know I was on sick leave. The third time was a little before noon when Aunt Janiene called to tell me she missed me. After that, it was Aunt Sue around two to tell me she was thinking about me. There were a lot more calls from Dad and Morgan that I’m not bringing up. Well, not in detail. I just wanted to make a point and explain why I had pain on the brain. 

 

“Fine or getting better,” was my usual response. If I felt a little chatty, I’d add, “Memories of your pain were worse.” Then I’d get resituated on your tan brown chair, like it was tied to my response.  

All the focus on pain got me to thinking – maybe even pontificating – if you want me to get all fancy. Pontificating about the chain of pain and what sucked worse.

Remember how I’d say that vertigo was by far and away the worse kind of pain. You were there. And you were scared. You’d never seen me so sick and it came on without warning. It was during the snow storm. I was projectile puking on the kitchen floor and couldn’t move.  You ran like Chicken Little outside to get Dad, who was shoveling snow. 

Vertigo was the front-runner because I was so scared and physically out of control. I couldn’t even walk. After that, I’d say appendicitis and gall bladder attacks were the next worse because I couldn’t fart. But, I got good drugs to dull the pain. And my naughty nine year old to add some bawdy bathroom humor. Then I’d digress to childbirth, strep throat, and broken bones - in that order. This was before my latest link on the chain of pain– the bowel obstruction.  Even with nearly dying, I’d put that link somewhere in the middle of the chain of pain.   

As I went through each link, it dawned on me, that my entire chain of pain was all physical – but in the big scheme of things it was nothing. It was nothing compared to the emotional pain of watching you go through the physical pain of your cancer.

You said you had it easier than me. You said it in airports, waiting rooms, on elevators, on escalators, in cafeterias, in your room, on the phone, in hospitals, and hotel rooms. I didn’t believe you. Now I do. I know. Especially, after last week’s wild ride: physical pain is easy; emotional pain is not. And the emotional pain of watching someone who you’d die for go through so much physical pain is the ultimate worst on the chain of pain.   

I'm just saying physical pain shrinks over time because you forget it. Emotional pain grows over time because you relive it. Think about! You know I wouldn’t lie. 

Last week, I knew the physical pain would end because either three things would happen: I’d lose consciousness because my body would not put up with more than I could handle; I’d get some sweet mind altering drugs to dull the pain; or I’d die. And now that I know there’s an eternity that would have been okay with me. But then Morgan and Dad would have to go through the emotional pain that would grow and grow and grow. That would suck big time for them. And I really have so much more I want to do –like tell your story. So it all worked out. 

There’s something that’s been bugging me though. Did you feel how lost I was on Lake Philpott kayaking with Dad on that Sunday? It was all about no butterflies, you not getting to kayak or enjoy the beautiful fall colors, some blubbering, empty feelings, a little yadda yadda, and some major woe is me. I think you did. Even if I didn’t think so at the time. But you knew. Right?  It was just that I was so wrapped up in my own emotional pain to realize you were there the whole time. I would’ve known that if I would have done a better job at feeling better instead of feeling lost. Don’t you think?  Now I sound like our broken record: words don’t teach; life experience does. But honestly, did it have to be so radical? I’m not an idiot. I’m a quick study. I didn’t need to have a near death experience or relive the horrors of your pain to believe. 

Or did I?

 

D Day Plus 225: (October 19, 2010): Parole

The nurse and my new roommate, who checked in last night after emergency gall bladder surgery, were chatting each other up about the joys and pitfalls of motherhood. Both had daughters in elementary school and were full of room mother stuff and projects.  They were all about my daughter is so this and that. Or they have so much homework. And I know daycare is really hard. And I spoke to the teacher. And I don’t know how they expect…..And all that yadda yadda yadda ya. 

I didn’t want to play, so I pretended to be sleep. I wasn’t being antisocial. I talked a lot about nothing with them earlier.  I just didn’t want to go there with them.  And you know what I meant about that – as soon as you mention kids and cancer or death – everything goes south. Either you become the victim they fawn over.  Or you get bombarded with their sad story like it’s a contest. Or there is an awkward silence while they're trying to find a way to, as Snagglepuss would say, “Exit stage left.”

Don’t get me wrong, the nurse was really nice.  And so was my faceless roommate all hidden behind the privacy curtain.  I tried to steal a peek last night every time I got up to pee, but never could see much without looking like a stalker. 

Oh I forgot, last night, I got my catheter out. That was good, except they kept pumping with saline. So I had to go every two or three hours. That was a big hassle because I had to call someone to unplug my IV and help me out of bed. After the second trip and no help in sight, I figured it out on my own. Besides, I had a lot of practice with you and my other stints in the pokey. Oh I meant to say hospital.  I really was a pro.  A PRO---feSSional. And I meant that with a long “s.” I let that IV pole and that little urine hat in the pot know who was the boss.  

You know what? Sometimes I didn’t understand why you liked someone to stay all night with you in the hospital.  I liked the quiet time and not having to perform for visitors.  You know the “oohs” and “ahhs” or  “it’s amazing how well you’re doing” when things are going well. Or the “you’ve just had surgery” and the "waddya expect" when they’re not.  

But let me tell you, the first time I had to pee last night and didn’t know if anyone was coming to take me, I felt helpless. Now I know why you liked to have family around all the time in the hospital. Just in case you had to pee and you didn’t want to wait. Or if you needed ice chips. Or if your IV was beeping and you thought an air bubble would cause an embolism. Or if you needed more drugs. Or a familiar face to tell you it was going to be all right. I know you told me that. But now I know. Really. 

I donned my earbuds and thumbed for my Easy2Sleep track on my iPod in hopes of you finding me. It worked the other night and I thought it would work again. Maybe you’d show me some more or remind what I was supposed to already know about this eternity thing. I cranked up the volume really loud intent on drowning out the chatter behind the curtain and clatter of rolling carts. I started breathing easier, but you didn’t come. And I needed you. How was I supposed to balance reality with eternity?  How? 

Yesterday was rough, but no one knew how rough. Not Dad. Not Morgan. Each time I swallowed to stop the NG tube from piercing my throat, I thought of you.  Each time I asked for ice and savored it as it melted on my tongue, I thought of you. Each time I got Dilaudid, I thought of you and the fists of Dilaudid punching your stomach when the nurse gave it to you full throttle. Each time they took my vitals and asked all the probing questions, I thought of you. Each lap around the nurse’s stations, I thought of you. Each thought made me sadder and sadder. 

It hurt to watch you go through it the first time. It hurt even more the second, third, and hundredth time. Morose laced with anxiety. That was me. 

When you didn’t come, I broke down and asked the nurse for a hit of Dilaudid.  That’s when she asked me if I had children. I said, “A daughter 23 in Roanoke and a son who passed.”  I held my breath waiting for her to do one of the usual three. But she didn’t.  She patted my hand and gave me Dilaudid really slow and easy. That way it didn’t punch me in the gut. 

I drifted off to sleep plotting my escape.  I’d walk a few more laps and show everyone that I was ready to go. Then I’d get my NG Tube out.  The doctor half promised me that yesterday.  Then I could eat solids.  Then I’d get my IV out. Then I could take pain meds by mouth. Then I’d walk some more and maybe pass gas. Then they’d know my insides were okay.  Then I’d call Dad to come pick me up. Then I could finally get a goodnight’s sleep. That was my plan. And I was sticking to it. 

And my plan worked. I got paroled around five in plenty of time to watch the Dancing With the Stars Results Show. Before Dad came, I told the nurse about you and how awesome you were and how the hospital made me relive everything. She listened and didn’t do anything like I expected. She just smiled and made feel like it was all right.  And maybe it was.  Because, you were back. You hugged my heart. I felt it. Right when the orderly wheeled me to curb, to Dad, and to sweet sweet FREEDOM. 

 

Now how’s that for good behavior? 

D Day Plus 224 (October 18, 2010): Bridge to Awakening

Alone after midnight in my hospital room, I buzzed the nurse’s station for ice chips and pain meds. Since surgery, I’d been in and out of consciousness – thanks to the Dilaudid and sleep deprivation. According to Dad, the surgery went well. They cleaned up the adhesions so my insides weren’t a tangle mess anymore. My surgery was laparoscopic. Not open surgery like yours. So you win when it comes to scars. Remember how you explained your scars away by saying “I was attacked by sharks.” You’d wait for your victim’s reaction to your tall tale – then smile. The real story got old and sometimes you just wanted to lighten things up a bit and play with people.  Sort of like a cat playing with a mouse.  

Dad got a prize after surgery – a glossy color picture of my bowel all cleaned up and pretty – suitable for framing. Before surgery, I got a prize of my own– a foley catheter.  Remember how I teased you about being an octopus with all those tubes coming out of your body? I didn’t tease you right away. It took a little while for me to get over the initial shock of seeing you connected to all the machines at MD Anderson. After a week or so your sense of humor came back. Mine was coming back faster. But in your defense, my bowel surgery paled compared to yours. Anyway, if I would’ve had a chest tube I would've of caught up with you in the tube department.  But don’t you think I get a gold octopus star for sporting an IV, NG tube, and catheter?  

I shooed Dad out last night around 6:30 or so. He was tired and would’ve stayed. But, I didn’t want to worry about trying to feel better than I felt. That didn’t bother you. You liked someone with you in the hospital all the time – even when you were sleeping. I didn’t mind staying. In fact, I got really good at distracting myself (and not to “Rainman” you) with crocheting, writing, drawing, or reading. You said, “I like to see you happy and relaxed.” 

I fumbled to find the right button on the remote. The one that turned on the light at the head of the bed so I wouldn’t spill ice chips. Before I got it right, the foot of my bed started rising. Once I got that under control, I found the right button. In an instant, the pale green walls and wall locker came into focus. Don’t you think all hospitals look the same – they have the same muted color pallet, same blue recliner chair that folds out into a bed, same IV poles, same bedside table, same window blinds, same whiteboard with the name and number of the nurse, tech, and doctor?  

A tech came in with my ice chips and a promise – the nurse would be here soon with pain meds. It didn’t really matter, my throat from the NG tube hurt more than the surgery. I only wanted to stay ahead of the pain. I wanted ice chips more. I had some around 9:00, the first thing by mouth, in two days. It was the only thing that soothed the fire in my throat.  

Right after the tech left, I spooned in a couple of ice chips, let them melt, savored the sweet relief, and really appreciated how good it tasted – just like you did, when you finally graduated to ice chips. You said, “This tastes so good.” I thought it was funny too see you in ice chip ecstasy. I get it now. 

The nurse came along with the drill, “What’s your name? What’s your date of birth?” I got the answer right and got my hit of Dilaudid. This nurse didn’t inject it as fast as the other nurse. So I didn’t feel like I was getting slugged in the gut before the pain dulled. 

I wanted to drift back to sleep. But the muffled voices of nurses and the random squeaky cart outside my room annoyed me.  So I turned on the Easy2Sleep track on my iPod to drown out it out. The track sounds like heavy rainfall on a tin roof.  Sort of like when it rains in Bassett. About five minutes into it, my mind wandered and relaxed enough for me to appreciate all that was right in the world. I was thankful to be alive. Thankful for Dad. For Morgan. For You. For Katie. And all my extended family and friends. 

That’s when things got fuzzy. You took me back to the beginning and reminded me. Reminded me that it all worked out fine and the way it was supposed to. It wasn’t about cancer and beating it. It was about the journey – the highs and lows. The highs for the exhilaration and the thrill. The lows for the growth and to reach new highs. It was knowing unconditional love. It was about you and me and everyone keeping up with who we really are – perfection. It was knowing we are eternal and there is an eternity.  

As soon as it happened, I turned off my iPoD and tried to get you to come back. But the harder I tried, the further away you seemed. For now, the connection was lost. But, by now you'd think I'd know, inspiration never comes when you're trying.  It comes when you're not.  

D Day Plus 223: (October 17, 2010): The Call

At 8:30 in the morning it was my turn.  My turn to make the call –the kind you never forget. It was to Dad. “They’re going to operate within the hour. Come now.” Each syllable hugged the NG tube tighter and tighter like a boa constrictor. Sand paper on strep throat would have felt better. You got it right. NG tubes really suck – on so many levels.

Because of you, I knew calls like this, were better to give than receive. Mostly because I wasn’t there going through the experience with you. The distance – physical and emotional – catapulted me into a frenzy of fear. I needed to see the whites of your eyes to know where your emotions had taken you.Where you afraid? Had you given up? Were you lonely even though you weren’t alone? Did my proxies make you feel better?  Did they understand that you weren’t depressed when you were quiet? You were only trying to get reenergized. Could they sit with you in silence? Did they know how to send you unfettered love, like me?   

You didn’t make the worst call. Dad did. Both of you were in Houston trying to get you enrolled in the TIL Clinical Trial. You were in so much pain. Pain I knew now from my bowel obstruction. Pain you knew from the cancer. It had perforated your bowel and made you septic. Dad called my cell after you went into surgery. I was driving home to be alone and hold my private vigil for you. That’s when he told me you probably wouldn’t make it out of surgery. And if you made it out of surgery, then you probably wouldn’t make it beyond the first week. 

I threw the phone on the passenger floor and started screaming “NO” as I drove down Algonkian Parkway. I screamed until I couldn’t scream anymore.  That’s when the tears flowed and didn’t stop for an hour. I held my private vigil waiting for Dad’s next call. The one where you defied the odds, but weren’t ‘out of the woods’ yet.  That day, I got my worst and my best phone call. Thanks to Dad.

   

Nurses, doctors, and techs paraded through my hospital room prepping me for surgery with the same round of questions – What is your name? When is your birthday? What type of surgery? What's your pain level? It wouldn’t have been so bad if I didn’t have the NG tube. But, I did. 

Dad still wasn’t there and the pace was picking up. They were almost ready for me in surgery. I wanted Dad –just in case. I wanted to say goodbye—just in case. I wasn’t afraid, really. I knew relief was on its way. Either way I’d win. I’d be with you. Or stay with Dad and Morgan. I’d never tell Dad that, because he’d say I was morbid or giving up. You can’t help not think about death. Or what it feels like whenever they put you under. You can’t. Right?  

Dad finally showed up – looking a little disheveled and uncaffeinated. Five minutes later the surgeon’s nurse came to take me back to surgery. Dad stayed until they told me to count back from ten.  Then, he kissed my forehead and said, “I love you.”  The way he did when you went to surgery.  On that day when I rode the wave of my best and worst phone call – ever. Then I was out like a light. I only made it to nine.