Part 34 - Failure to Launch

Continued from Part 33 

At admission, Mom had provided the hospital staff with a copy of the medication log that we had been using for Dad at home with names, dosages, and dosage times for each of the dozen or so drugs that Dad had been prescribed.  Several of these had been switched over to IV-form and added into the IV line; a few were brought in for Dad to take in pill-form as he had been at home, which was a problem because he could barely swallow.  Even after a phone call to the oncologist’s nurse and discussion with the nursing staff at the hospital, I was still concerned about the expectation that he could effectively and safely swallow pills and because some of the dosages being administered didn’t match what he’d been taking.

When the oncologist came to see Dad on the oncology floor mid-morning after Dad had been admitted, he rewrote the medication administration orders.  He looked at Dad and said that, although he felt it was unlikely that the cancer had advanced at this point given the treatment protocol Dad was on, we couldn’t be sure about anything until we could get an MRI, which he felt wouldn’t be possible for at least another day or two due to Dad’s decreased level of alertness and his pain level. 

His main plan seemed to be waiting to figure out what the plan was, which, as the family of any cancer patient knows, is NOT a good plan at all.  Delays are Enemy #1 when dealing with an aggressive cancer like Glioblastoma, but, until we knew more about what had caused Dad to decline so rapidly in such a short period of time, waiting was really all we could do.

The oncologist told us that in addition to a blood transfusion and platelets that he was considering ordering to boost Dad’s blood count, he also wanted Dad to get a medication called Neupogen, which is a growth factor that stimulates the production and activation of neutrophils, a type of white blood cell.  At the mention of the drug, an alarm went off in my head, and, upon quickly reviewing notes in the Notebook, I saw that Neupogen was listed on the treatment protocol that Dad was on from Duke under Things To Avoid.  On the paperwork we’d been given at the Brain Tumor Clinic, I had scribbled a note out to the side that read, “As a growth factor, admin of this rx – potentially counteractive to Avastin.”  I showed the info to the oncologist who looked perplexed; evidently, he did not already have this information, even though he had used Avastin to treat other patients before Dad.

The next move was for the oncologist to consult with the neuro-oncologists at Duke who had authored the protocol; our guy said he would get right on that and get back to us on the Neupogen.  “We need to get his blood counts back up,” he said as he left the room, “and then he will get exponentially better.”

Dad had had an appointment to get a monitoring-type of MRI that very afternoon and had been scheduled to get Avastin and chemo the next day, and I was filled with disappointment that our plans had had to change.  Thinking that we could get some GOOD news for a change, I’d been so focused on getting that follow-up MRI, despite the fact that I, like Dad and like the rest of my family, had developed a raging case of Scanxiety.  Now that he was too sick to even get an MRI (and considering the fact that when he did get one it would be to check for problems instead of monitoring for progress), I saw that I should have been grateful for him have the chance to get the scan instead of the alternative, but, as usual, that was all only seen in hindsight.  Now, instead of at least having a Plan, we were left with only a cancelled plan and confusion.

And fear.  Dad was so weak at this point that he couldn’t lift his head from the pillow, couldn’t suck liquids from a straw, and could barely talk loudly enough for us to hear.  He had a deep cough, and the coughing exhausted him and made his  throat and chest hurt.  When asked, he reported that he had a headache “in the middle” or “in the top” of his head ("seven or seven and a half out of ten" on the pain scale, he said), which of course made us think that the cancer had spread despite the oncologist’s prediction. 

For the rest of that day, Dad was in and out of a medicated fog, on a heart monitor, with multiple IV lines going, and getting oxygen through a tube in his nose.  In getting him settled in the hospital bed after he was admitted, the nurse had discovered a pressure sore the size of a pencil eraser on his low back.  A wound care team consult was ordered, and this area was cleaned, treated, and dressed; Dad later told us that that sore hurt almost as much as his head had been hurting, another dire consequence of an impaired immune system.  By late afternoon, the Infectious Disease team had ruled out viral meningitis, and over the next 48 hours cultures were going to be grown in the lab to test for bacterial or fungal meningitis, pneumonia, and other types of infection.

As hard as it had been to get through the stressful, sleepless nights since Dad’s diagnosis, that was nothing in comparison to the first night of the second time Dad hospitalized: it was the first night that I thought that it was entirely possible that Dad wouldn’t survive, not just the cancer but the night.  We were lucky enough to have our case assigned that night to a nurse named Meredith, who provided exceptional quality of care for Dad and who took Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor.  She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well.  As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember.

Even in the haze of the pain and the pain medications, Dad strived to be appreciative and polite. With his throat incredibly sore, he offered a husky “Hello!” to the woman who came in to empty the trash can in the room, and he gave a gravely “Thank you!” whenever one of us used a finger to hold liquid in a straw and then release it in his mouth or when we put chapstick on his cracked lips.  He, of course, took an instant liking to Meredith, as did we.  She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie.  Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment.  “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Not long into her shift, Meredith said she had orders to administer Neupogen; I relayed my concerns and the earlier discussion with the oncologist to her, and she put a call in to the doctor to verify the orders.  Contrary to his earlier commitment to “get back” to us on the issue, the oncologist hadn’t communicated with us at all on the Neupogen verdict, but over the phone he told Meredith that he had consulted with the doctors at Duke and they had agreed that the priority was to boost Dad’s blood counts and thus the drug should be given.  This was the first of many points of confusion and miscommunication (or non-communication) in Dad’s care, but, like the rest of the family, I was grateful that the medicine was being given despite the way we’d found out about it because I was desperate to find something that could help Dad get through what I saw as a bump in the road, even if it took altering the protocol or the plan to do that.

Over the course of the next several days, I worried a lot about how and when Dad could get the next dose of chemo/Avastin; I made fervent notes in the notebook about it in between the times the oncologist came by to check on Dad.  When I asked about when Dad could get it again, the oncologist said we needed to get Dad stabilized, and then he added, “Avastin has a three-week shelf life, and it’s only been two weeks since he’s had it, so we aren’t losing ground if we can get it in him within the next week.” 

I wanted that Avastin for Dad like I was an addict on a street corner.  I was like a boxer warming up before going into the ring, punching the air and wearing a super-tough look on his face.  Maybe even growling a little:  Here we come, Cancer, and we’re going to kick your ass!  But I was wrong.  The cancer, the treatment, the illness didn’t even give us a chance to step into the ring.  We were so tired of Cancer and of tears and terror; we needed some Good News, but, other than the fact that Dad was still in the game at this point, there were none to be had.  Cancer could wreak havoc on Dad’s body, but it couldn’t touch our love. 

Up next … Part 35 – Hanging On

One Year Later

It’s been one year today since my dad went on ahead.  I still can’t fully grasp that he was sick or that he is gone.  I wonder if the other people who were involved a year ago remember things differently from how they play out in my memory.  Maybe my eyes weren’t wide open, likely my memories aren’t all 100%, almost surely my perspective is just my view through a viewfinder.  

But here we are, one year later.  I know that living through this experience has changed each of us individually and changed us as a group.  And while we now bear a sadness that will never completely go away, we carry a strength and certain knowledge that shape our lives and influence everything we do.  

One thing I am sure that everyone connected to my family’s tragedy would agree on is that what happened was shocking and awful.  We are surviving only through the closeness,  connection, learning, insights, love, and support that we have had and continue to have.  And, despite the time that has gone by and perhaps even because of it, I am still deeply engaged in the grief process right now.  Even through the fog of that grief, though, I feel a lot of love and appreciation, both for my dad’s life and all he taught me and for the experience of being with him during my whole life and through his sickness and his death.  What I’m trying to figure out how to do now is to be happy without him physically being present, to think messages to him instead of telling him directly, to see something beautiful like a perfect sunset and not fall apart because he can’t see it, to experience joy in things and to keep my heart from breaking over and over because he can’t be here to celebrate with us, to go to sleep without crying, to remember without falling apart.  

Shakespeare said, “Sorrow ends not when it seemeth done.”  How very true!  The persistence of grief and its changing nature have been very surprising to me.  I’ve heard it said that grief is a measure of one’s love, and from my perspective that appears to be true:  we may shed a tear or feel sad when someone whom we didn’t really know or love dies, but that’s not really grief, at least not the same kind we experience when someone whom we love and who is part of the foundation of the person we are dies.  That kind brings us to our knees, causes a burning pain in our hearts that does not diminish over time, and colors everything we do and think and say.  It sounds like a symphony playing with one instrument that’s really out of tune, and it changes who we are.  

One of my sisters told me that she recently read that coming to terms with a loved one's death is like ramming a log into a door.  Eventually it will get through, but, until then, it's noisy, exhausting, frustrating, and painful at times.  She said that looking at grief in that way gives her hope that one day what we will feel is gratefulness for having had Dad for as many years as we did, happiness when we remember him, and a sense of pride at how we rallied and came together to take care of him when he needed us.  But for now, the grief is still so thick and ever-present, and perspective is something for which we struggle on a daily basis.

Besides missing my dad and feeling the pain of his absence to my very core, something that gets to me now is the pressure to have moved on, to have gotten over it, to have “healed” (a word I hate in this context).   I’m not going to go back to “normal” - I will never be the person I was before my dad got sick.  I can't stand it when someone dies and people keep saying, “Be strong!” or "Hang in there!" to the family.  Really?  Why is that what’s being recommended?  (And what other options are there, really?)  While I, of course, recognize and appreciate the kind intentions behind remarks like these, all of these platitudes only serve to fuel my anger at the injustice, the ridiculousness, and the absurdity of a very healthy person like my dad getting sick and never getting better.  

So here I am, one year later.  The loss feels different now, and the same.  And so do I.  I know that I am still my dad’s daughter and that all he taught me is right here with me, as he is in spirit, but I am undeniably changed.

On a Blind Date

Forty-four years ago today, a smart, beautiful college freshman with long red hair married an ambitious, dashing college senior.  They met on a blind date and dated for just a few months before they got married.  They loved each other through ups and downs, while raising their children, during career changes and moving to different cities more than twenty times, and in sickness and in health over the course of forty-three years together.  They spent many happy anniversaries together and made countless memories that will forever be in the hearts of those of us who love them.  

Part 33 - Hospitalization 2.0

Continued from Part 32

When I arrived at the hospital that day, I hurriedly made my way to the oncology floor.  When I rounded the corner and entered the room, the transformation in Dad shocked my system. Seeing him there, with his neck so incredibly swollen, fighting tears and with so much fear in his voice, there was no denying that Dad was in great peril and so, so vulnerable.  The wheels were in motion to figure out what was going on that had caused this decline and this pain, but I was astounded at how slowly those wheels were turning. Blood work had been sent to the lab; they had given Dad some pain medication, but it was obviously not working at all.  

In pain and scared, Dad was suffering, and it was as if the nurses who were buzzing around doing everything BUT helping him were oblivious to the depth of that suffering.  I wanted to punch someone, I wanted to collapse in tears, I wanted to throw something or to throw up, I wanted so much to find something to do to help and to protect the man that I loved so very much.  

Finally the oncologist arrived; he came in with the lab results in his hands and told us that Dad’s immune system was almost non-existent.  “A plummet in blood count numbers doesn’t typically happen with the treatment protocol he’s on,” he said, but IT HAD.  The doctor wanted more blood work, a CT scan, and an MRI to be done to see what was going on.  He said he was putting “rush orders in” for consults from neurosurgery and infectious disease and for pain meds along with steroids and anti-seizure drugs to be administered, and he told us that he would call the room when the results of the tests were in.

After another half hour or so ticked by with Dad still in blatant distress, I went to the nurses’ station and was told that the pain meds were still en route from the lab.  With every ounce of patience I could summon, through gritted teeth and with fists clenched so tightly I left fingernail marks in my own palms, I asked for a RUSHED rush and went back to wait in the room with Dad, Mom, and my sisters.  At grueling long last, the nurse came in to add the medicine to the IV, and less than two minutes later Dad was in such a sedated sleep that his respiration rate was precariously low.  The nurse set up an oxygen tube at the edge of his nose and left the room.  

While Dad slept, we took turns watching over him and making phone calls in the hallway to update the rest of the family.  When he woke up about an hour later, he said he had had a terrible dream in which he was in a little room like at a doctor’s office with the door closed.  Dad said that in the dream, someone in the hallway was going door-to-door, knocking on some doors and skipping others, and he knew that the people in the rooms with the doors that were knocked on were going to die right then.  Dad said he was so afraid that his door was going to be knocked on but that he wasn’t ready to die.  Terrified, he waited, but the knock didn’t come.  He said it was really cold there and that he hoped that when he did die that it wasn’t scary and cold.  He said he didn’t want to die because he didn’t think we would know where to find him and he didn’t want to be lost. 

With tears in our eyes and our hearts in our throats, we told him that we were going to find out why he was so sick and then we were going to get him the medicine he needed to get better.  “It’s not your time, Dad,” I said, with tears running down my face.

A few minutes later, the neurosurgeon (a different one from the one who had done Dad’s surgery nine weeks before) came in to escort Dad to Radiology to get a CT scan.  Since I’d gotten my sister’s call the afternoon before after Dad’s first big fall, I thought a lot about the possibility that Dad had had a stroke, which was one of the risks of Avastin, and evidently that was being considered by the team at the hospital as well.  

While Dad was away, the nurse came in to tell us that we were being moved into a larger room across the hall, and so we moved the few things we had with us and continued our wait in the new room.  Less than 30 minutes later, a technician wheeled Dad in his hospital bed down the hallway.  The guy must not have gotten word about our being transferred to the new room, though, because he passed right by the doorway of the room where we were and then started turning the bed to get it into the room where we’d been previously.

“We’re across the hall now,” I leaned out and told the tech, who said, “Is this Bullard?  I have the Bullard guy here.”  He pronounced our last name like the word “bullet,” though, and Dad, who looked to be sleeping until that point, opened his eyes wide in fear and said, “What?  I’ve been shot in the head by a bullet?”  Not understanding what Dad was saying, the tech asked, “What?” and, trying to get clarification on what he thought had been said before, Dad kept asking “What???” in response.  It took several minutes of explaining by my mom, my sisters, and me and the nurse to calm him down so that he could understand that he hadn’t been shot.

The nurse got Dad hooked up to the monitor wires and the IV lines again, and then we heard the phone ring in the empty room across the hall.  Thinking that it was the oncologist calling the report the results of the CT scan to us, I dashed across to answer but didn’t make it in time.  

Several minutes later, another nurse came down from the nurses’ station with the news that the oncologist had been trying to call and wanted us to know that, although the report from CT said that Dad had had great difficulty “holding still” during the scan, they felt the scan was accurate and a stroke had been ruled out.  “The doctor said it could be new tumor growth,” the nurse reported, “but he feels like it’s more likely some sort of infection.” 

Over the next few hours, my mom, my sisters, and I tried to keep Dad’s fear and his pain at bay; the sedative that separated him from his pain also affected his respiration rate, which made it necessary for him to have the oxygen tube in his nose, which appeared to irritate him greatly even in a sedated state.  He had a low-grade fever and looked flushed, but he said he felt like he was freezing.  His neck was swollen so much that he didn’t even look like himself, and it made him yell out in agony whenever the bed was jostled or a well-meaning nurse or nursing assistant adjusted the pillows under his head.  It seemed like having a cold cloth on his forehead and having us hold his hands helped as much as anything else, which was very little.  We were struggling to try to find a way to help him, but the only thing really to do was to wait.

Later that day, the Infectious Disease doctor came by and said they needed to do yet more blood work to run some cultures to figure out what was going on.  Dad’s white count was apparently very high, which signaled infection.  I pressed her for a guess as to the type of infection, and she said, “I think it’s meningitis.  What we don’t know is if it’s fungal, viral, or bacterial.  If it’s viral, the four of you have been exposed and you will have to be in isolation for several days before we can make sure you won’t get it too.”  

We looked at each other with wide panicky eyes, and then I asked, ”Can we stay with him while we’re in isolation?”

“I don’t see why not, since the cross-exposure will have already occurred,” she said.  

My sisters, Mom, and I looked at each other again and wordlessly formulated the only plan that we could at that point: batten down the hatches and hold on.

Up next … Part 34 – Failure to Launch