The Fuel of Hope

I recently came across a video clip of an interview with Dr. Henry Friedman, the Head Honcho at the Preston Robert Tisch Brain Tumor Center at Duke University.  Watching it brought back memories of the day about a month after my dad was diagnosed, the afternoon on which this same man called me on my cell phone to say that the team at Duke had received Dad's paperwork and had approved him to come in to their clinic for a consultation.

Knowing the outcome as I do now, it feels odd to think back on the day when that call came in with what felt like the best news of my life.  I vividly remember standing in front of my desk at work, hearing my cell phone ringing, and then seeing the North Carolina area code come through on the screen of my phone.  Like a drowning person grasping for a life preserver, I hit the button to accept the phone call and said, “Hello?”  A few of my coworkers, each of whom knew that I had been anxiously waiting on that call, stopped what they were doing and stood motionless, watching my face as I listened as Dr. Friedman responded to my basic greeting by launching into a rapid-fire monologue about how we needed to get my dad in to see his team at the clinic at Duke.  I felt like it was the voice of God speaking to me; I felt like hearing that Dad had been accepted into what we’d been told was the best program for his type of brain cancer in the world was a sign that Dad was going to be ok.  The stream of words coming through the phone line sounded like a pep rally of the highest importance: “We have seen great success with the treatment for GBM that we’ve been doing in this clinical trial,” he said, and for the first time since Dad’s diagnosis I felt Hope. Friedman offered me an appointment for my dad and of course I gratefully accepted, with tears streaming down my face as I stood in the middle of my office.  I thanked him and then we said goodbye; I hung up the phone and turned around to face my coworkers, who broke out into a round of applause.  I felt like I had won the lottery.

Watching this clip, listening to the same voice talk about the horror of brain cancer coupled with the renegade Hope of his treatment plan, I feel such a mixture of emotions.  Although I spent a lot of time after my dad’s death feeling very angry that the Hope that we’d been given hadn’t panned out, I am grateful now that Dad and the rest of us were able to have that Hope for a period of time, because the thing from the video clip with which I don’t agree is the idea that the worst thing one can hear is the word Cancer.  I know now, as do others who have gone through similar situations, that the hardest thing is when the doctors don’t know what to do, when the treatments don’t work, when the Hope has to change to things like comfort and peace - and when even those things seem like a far-reach.  

We didn't actually meet with Dr. Friedman once we got to Duke; we met with some of the neuro-oncologists and other staff members there that he had trained and talked to them about his latest protocol for treatment of GBM.  We felt the support in the fight against the insurance companies as discussed in this video, and we appreciated that and the other resources we were given while we were there.  

Of course I wish that my dad could have had a "good outcome." Of course I wish that my dad could have been one of the people in this video talking about long-term survival.  Of course I wish that he could have been one of Dr. Friedman's examples of how things could go right.  But, failing that, from this vantage point I am grateful for the Hope that we were handed by this guy and his team and for the fuel that it gave us, if only for a short while.

Birth Story

There aren't many days in a person's life that one knows will always be one of the best, one of the most memorable, one of the coolest days ever, but I am lucky enough to have had one of those days recently, thanks for my sister Nancy and her husband David, who not only brought the newest member into our family but were gracious enough to include many of us in one of the most awe-inspiring things I've ever been a part of. 

Around 8:00 in the morning on Sunday, March 24, my cell phone rang, and I saw on Caller ID that it was my brother-in-law calling.  Given that Nancy's due date was two days before, I got butterflies in my stomach before I even answered the phone.  "David?" I said, instead of even saying hello; I wanted to hear him say everything was ok before I would let myself be overtaken by joy and excitement.

"She's having contractions, about 9 minutes apart," he said. "It's been going on for a few hours, and they're getting closer together." 

"Are y'all ok?" I asked anxiously, still needing that reassurance.

"Yes, we're good, just wanted you to know what's going on," he said.  I could hardly contain myself as I finished talking to him and then dialed my sister Jennifer's phone number to give her the good news.  I talked to her for a couple of minutes and then we hung up so she could call the airline to book the first flight from L.A. to Nashville.  I called our mom, and then I hustled upstairs at my house to get ready to go.  I had gone to Nashville two days earlier to pick up my oldest daughter, who had taken a flight in from college to start her spring break.  We'd spent the night and had driven home the next morning, less than 24 hours before David had called me.  Thinking that Nancy might go into labor while I'd been there then, I'd packed my suitcase as if I were planning to stay for several days instead of just one night; my suitcase, in fact, was still packed, and so I quickly woke up my husband and my daughters to tell them what was going on and then I grabbed my bag and hit the road.

David called again when I was about 30 minutes away from my house to let me know that they were at the hospital and that Nancy was already at 4 cm.  "I'm on my way!" I told him.  I called Jennifer again and got her flight information; her flight was scheduled to arrive in Nashville at 5:45 p.m. that afternoon.  She said she was going to get WiFi on the plane so she could stay up-to-date about what was going on during the four-hour long flight.  "I hope I make it in time to be there when the baby is born!" she said, and I hoped I was right when I told her I thought she would.  As I drove, several group text messages were exchanged by others in the family, all excited and wanting an update as soon as possible.  The weather was stormy, but I made it in decent time to the hospital, parked, and went in through the front door.  I stopped at the Information Desk and got directions to the maternity ward.  I texted David and he met me at the nurses' station, where I was given a Visitor's bracelet so that I would be admitted to the delivery room area.

Nancy looked relaxed and happy when I got there; our mom was there with them and everything seemed to be going smoothly.  About 1:45 p.m., the nurse and the midwife came in and examined Nancy; she was already at 9 cm, but the midwife said it would probably at least a couple more hours before the baby had dropped enough to be delivered.  The midwife told us she would come back in 2-3 hours to see how Nancy was doing.

Lots of text messages amongst the group of Bullard family members were sent back and forth; everyone was so excited and anxious for the baby to be born.  We were all really hoping that Jennifer would make it to the hospital before the baby was born, but with the latest news it seemed possible that she might not be able to.  My mom asked my aunt Ellen to pick up Jennifer from the airport and bring her straight to the hospital; we knew that even if the baby was born before her flight had landed, Jennifer would want to get to the hospital as quickly as possible.  My aunt said she would get Jennifer to us as soon as she could, and I emailed exact directions to her so she would know which entrance to use and how to get to the room once she was inside the hospital.  

As we waited, Mom French-braided Nancy's hair and we chatted excitedly; what was going on almost felt more like a dream than reality.  About 2:15, Nancy was having some problems with itching, a common side effect of an epidural, and so the nurse gave her medicine for that.  Nancy told the nurse that she really hoped our other sister could get there in time, and the nurse said she thought there was still a good chance that would be able to happen.  Nancy said she wanted all of us to stay in the delivery room while the baby was born, and we were thrilled.  As I was finding out, even though I had had two children of my own, it's very different to witness a birth than it is to give birth.

Meanwhile, Jennifer emailed from the plane that her flight was supposed to be landing 20 minutes early.  We passed the new arrival time on to my aunt and crossed our fingers that the extra time would up the odds for Jennifer to be there for the birth.  Nancy's nurse, who was pregnant herself and who like Nancy had opted not to find out her baby's gender ahead of time, seemed to be deliberately taking her time with some things, and when she stepped out of the room we agreed that we thought she was doing everything she could to make Nancy's wish for Jennifer to be there come true.

About 4:15, the midwife did an exam and told us that Nancy was at 10 cm but that the baby still needed to drop a little more, and she added that she thought they should also wait a little longer for the epidural to wear off a little so Nancy would have better control during the delivery.  "Let's think about having you start to push about 5:00," she said.  "Fine with me!" Nancy told her, and we all made yet another silent wish that the baby would be able to wait until Jennifer was there, too.

David's mom Linda got there about that time.  We updated Jennifer, who said she was ready to run to meet our aunt as soon as the plane landed.

At a few minutes after 5:00, the midwife, her assistant, and Nancy's nurse came back in, and the midwife said, "Let's have a baby!"  It took a few minutes for them to get things set up, and then the nurse told Nancy it was time to start pushing.  I had been pacing around a bit prior to that time, full of lots of nervous energy, and at one point the nurse asked me if I wanted something to do.  "Yes!" I said, and she told me to stand at one of Nancy's legs and to count to ten each time she gave me the heads-up that Nancy was having a contractions and should start pushing.  I happily accepted my position, and my mom and David stood on either side of Nancy at the head of the bed while Linda stood to the side.  Every couple of minutes, the nurse instructed Nancy to push, and I counted to ten at what I thought was a medium-speed pace, during which time Nancy pushed.  (As I told Nancy later, I reasoned that if I counted at too fast a pace little to no progress woud be made in the delivery during each contraction - but that too slow of a pace would be unreasonable for Nancy to keep up with.)  We repeated that three times per cycle, and then Nancy got to take a very short break between contractions.  The midwife said she thought the pushing phase would take around an hour, and so I quickly reported that news to Jennifer via email in between contractions.  Jennifer responded that her plane was about the descend; she said she still hoped to make it in time but that of course she just wanted Nancy and the baby to be ok.  Again, I hoped I was right as I told her I thought she would make it in time. 

Nancy continued to push during contractions; I will never forget how awe-inspiring it was when the very top of the baby's head became visible.  "You've got this," I told Nancy at the start of the next contraction, and she looked me in the eye and then we started the cycle again, counting and pushing.  At 5:32, Jennifer texted that she was in Ellen's car and they were 10 minutes away from the hospital.  The two minutes between contractions during which Nancy could take a break from pushing seemed to go by faster and faster; the excitement and the awe in the room was almost palpable.  "Oh my god, this is so awesome," I must have said a dozen times during the next half hour or so; I felt like even that wasn't adequate in describing my emotions.

Jennifer texted to let us know she was one minute from the hospital.  A few minutes later, Linda volunteered to run to the nurses' station to give Jennifer the Visitor's bracelet, but, before she had had a chance to do so, Jennifer burst into the room.  She later told us that, as she rounded the corner to the nurses' station running (literally running - just so you have an accurate picture in your head here.), a nurse yelled, "ARE YOU THE SISTER?" and when she said "YES!!" the entire staff there, all of who had undoubtedly heard that Nancy wanted her to make it in time to deliver the baby, cheered and waved her into the restricted delivery room area, towards the room where we were. 

She was so happy; we all were so happy.  She all but floated over to Nancy to kiss and hug her; there wasn't a dry eye in the room.  A second later the nurse gave us the signal, and the counting and pushing started again.  The nurse told us it wouldn't be long, and the midwife asked if anyone in the room wanted to call out the gender of the baby after the birth.  "I'll do it!" David said excitedly.  By this time, Mom was at one of Nancy's legs and I was at the other, and so Jennifer squeezed in at Nancy's shoulder, opposite David, and we all in complete awe as, at 6:04 p.m., only nine minutes after Jennifer had gotten there, the newest member of our family was born.  

The midwife placed the baby onto Nancy's chest, as we all looked on in wonder, and then David announced, "It's a boy!"  Happy, grateful tears flowed, and Nancy looked down at her son and said, "Well, hello, baby!"  After a few more minutes, she said to him, "Now you need a name!"  After a brief huddle with David, the new daddy announced, "Meet Crosby Bullard Owens."  

As another round of smiles and tears went around the room, it occurred to me that, although it often takes a village to raise a child, sometimes a child can lift the spirits of an entire village.  

Welcome, Crosby; we're so glad you're here.

If the video doesn't automatically load in the box above, CLICK HERE TO WATCH A VIDEO ABOUT HOW CROSBY JOINED OUR FAMILY.

Missing Him

A couple of weeks after my dad died, a friend of mine who had lost her mother a couple of years before that told me that the thing that left her with the most sadness since her mom's passing was thinking about the senses associated with her mom.  I didn't really understand what she meant at the time; I wasn't able to isolate what the worst or the most difficult part of all of it was because it all seemed so unbelievable and so horrible at that point.

I know now what she meant.  Thinking about my dad's hands, his legs, his wrinkles, his face, his voice, his laugh, his smile, his eyes - all of his physical presence - and how I'll never be able to be around them again makes me feel so sad, so lonely, and so very desperate.  

Sometimes I get a little glimpse of what I think for a split second is my dad, and in that moment I am like a drowning person struggling to get back to the surface of the water for air.  

About a month after my dad died, I was driving to work and saw a man that resembled him driving a car just like his.  I had to pull over to the side of the road and catch my breath.  

For months after he went on ahead, I woke up in the middle of the night and thought I'd heard him calling my name, just like he did so many nights when he was sick.  

As I sat crying on the night of the six-month anniversary of his death, I picked up my cell phone and impulsively texted "I love you" to the cell phone number by his name in my list of contacts.  A few minutes later, I got a response that read, "Who even is this?"  I felt like I'd been sucker punched.  Part of me wanted to text back, "Dad!! It's me! Are you ok?"  but I just kept sitting there crying, and after a few minutes another message flashed on the screen that said: "I think you have the wrong number."  

Several times when I've heard a group of people singing, I've thought I could pick out the sound of his voice singing above all the rest.  Each time that has happened, I let myself look into the crowd, just to make sure.

About six months ago, I posted the last part of the Behind the Scenes Story on this blog.  The song I chose to link to at the end of that entry was Pink Floyd's "Wish You Were Here."  My husband, who, incidentally, doesn't usually read this blog, invited me to take a spur-of-the-moment trip to Natchez, MS, with him a few days later.  While we were there, we asked around to find out where a cool bar was and ended up in a bizarre little place that was literally built into the side of the levee, a pub called Under The Hill.  

Only a few minutes after we walked in and sat down on our barstools, a guy started playing his acoustic guitar, and his first song was that exact Pink Floyd song.  Luckily, the darkness of the room hid the tears that rolled down my face as I sat there and listened in awe to the music.

This past summer, we had an accidental "iCloud" syncing of all of the Apple devices in my household, and all of our Contact Lists were blended together.  I didn't think too much about it until a few days later when my phone rang and I looked at the screen to see that it was showing up as "Dad" calling.  Evidently, my daughters had my husband's phone number listed under "Dad" in their Contact List, and so the iCloud sync had added that into my phone so that my husband's call showed up that way on my phone.  In the split second it took me to realize what had happened, part of my brain actually believed it was my dad calling me, and I felt my heart sink into my stomach when the reality of what was really happening dawned on me.

On the night before we left to take my older daughter to college for the first time, I was sitting outside on my deck and noticed that the wind was blowing through only some of the branches of one of the many trees in my backyard.  It was kind of eerie, and the words, "Hi, Dad," went through my mind.  About 15 seconds later, an owl hooted from in the woods behind my house.  I couldn't see it, but I exchanged a "Hello?" with the owl several times before the hooting and the isolated wind-blowing stopped.

A couple of weeks ago when my family was in New Orleans, I took my younger daughter and her friends to see the hotel where my parents stayed every February when they went for a business convention.  There, by the fountain in the lobby of the hotel, I thought for a split second that I saw my dad out of the corner of my eye, but, when I turned to look more closely, there was no one there.  

On the surface, it seems like getting a tiny glimpse or feeling a split-second connection to a loved one who has gone on ahead would be soothing, and maybe one day it will be for me - but now it mostly feels like salt (or something even worse) being poured in a wound. 

"Although their physical form is gone, you are not living your life without him or her. To live truly without them would be to never have known them. Instead, you continue to live with them infused in your heart, in your memories, in your spirit. You live with their love etched into your being. They will always, now and forever, be a part of you."