No Answers - Part 4: In The End

Continued from No Answers - Part 3: Doctors and Death

Another thing that I find disturbing from during the time that my dad was sick is that we never found out what really caused his rapid decline or his death, as I touched on in this post as well.  The medical record from his second and final hospital stay - and his death certificate - list his primary diagnosis as brain cancer ("GBM"), which is of course accurate, but here's the confusing part: his death certificate lists a secondary cause of death as "pancytopenia," or low blood count, while the records kept by the hospice nurses during the final days of his life list only GBM.  Although a low blood count is an expected side effect of some types of chemotherapy, it is not one that is typically seen from the type Dad was getting.

However, for an undermined reason, Dad's blood count was low when he was admitted to the hospital the second time, but that was aggressively treated with transfusions, platelets, and medications and had resolved over the time he was in the hospital.  Still, though, his condition continued to decline, and the host of physicians on the case said over and over that they didn't understand why he wasn't getting better.  Several times towards the end of that last hospital stay, the oncologist said, "On paper, he should be getting better."  Not better from the cancer - although the scan did show that there was less of a blood supply going to (or "feeding") the tumor which was the goal of the treatment with Avastin - but better from the horrible infection which we can only assume he got from a compromised immune system.  The oncologist expressed lots of confusion about why Dad's immunity was so low, too.  I didn't think about it then, but I have many times since: what does lower immunity is steroids, and Dad was on a HUGE dose of them, for an extended period of time.  That was never mentioned by the team of doctors as a possible reason for the infection or the problems he was having; in fact, a severely compromised immune system wasn't ever mentioned to us as a possible side effect of that medication.  We were given reams of paperwork about the possible risks and side effects of the Avastin and the chemo, but nothing on the side effects or the risks of the steroids (or the seizure medication he was on).  Dad hated the steroids, and we did too, because of the side effects they caused that we knew about, like insomnia and blood-sugar level spikes; the oncologist insisted that Dad needed to stay on a very high dose of steroids throughout the course of his illness though because he continued to suffer from severe headaches.  Someone later asked me why the doctors never considered whether or not placing a shunt could have helped with the headaches.  I don't know, and, unfortunately, that's just one of many things that was never discussed with us and that we will never know.

I guess second-guessing like that probably happens a lot when a patient doesn't make it, at least on the part of the family.  I wonder if it happens on the part of the oncologist too, though, or if he just crosses that patient's name off on his list and moves on.  I hope there is a review of some kind, perhaps so that something could be learned that could help the next patient.

I would venture to guess that it's not uncommon that not knowing the actual cause of death is unsettling to those left behind.  

I don't understand why no one was able to explain to my family what was going on medically with my dad; I'm not sure if they didn't care to figure it out because they didn't think it mattered since they felt he was obviously terminal anyway, if they couldn't figure it out due to their inadequacies or problems with the medical testing [one doctor told us that scans like CT's and MRI's "just can't really be trusted," whatever the HELL that means], or if they couldn't figure it out because it was truly a medical mystery.  I realize that all of the problems stemmed from the unpredictable nature of neurological disease, but all of the unknown just exacerbates my emotions - anger, sadness, frustration, all of it - even more because it feels like someone, somewhere, failed - failed to figure things out, failed to fix things, failed my dad and my family.

I've always been a right-brain thinker. I like logic and consistency. I don't mind following rules that make sense.  I like sticky notes (like my dad) and flow charts (unlike my dad - he didn't feel the obsession need to visualize the steps or the details like that).  On the flip side and to the point of this post, I have trouble tolerating things that don't make sense, that don't seem fair or logical, and that haven't been explained.

I know that knowing wouldn't change anything and that it probably wouldn't make me feel one iota better if I knew the answers to the questions with which we've been left, but still somehow not knowing disturbs me.  I guess having it remain a mystery just further adds to the shock of the whole thing having happened in such a relatively sudden manner - the diagnosis in an otherwise very healthy person, the lack of improvement despite following the prescribed course of treatment including surgery, rehab, and participation in a clinical trial, and then the rapid decline from which he could not recover.  I think I will always be stuck questioning why the things that weren't supposed to happen happened and why the things that were supposed to happen didn't.  

Part 35 - Hanging On

Continued from Part 34

On the second day of Dad’s second hospitalization, Dad’s nose and cheeks looked red and swollen, but his neck was a little less swollen, his pain was better controlled, and he was coughing less with the medicine and breathing treatments he had received.  

When the oncologist came by for rounds that morning, he said that he expected “to see a neurological improvement as the infection started to clear,” which he expected would happen "soon, given the spectrum of antibiotics being administered."  He said that he was ordering an MRI for that afternoon and that we should plan for Dad to be in the hospital through the weekend, which meant we would be there on Christmas Day. 

We continued taking turns staying with Dad, with two of us there at a time. For most of the day, he was chatty, but, as my sister noted in the Notebook, his words were “mumbly,” presumably because of how weak he was and possibly linked to the pain medications being administered.  He had taken in very few calories over the past few days, but he kept saying that he wasn’t hungry and he got annoyed when one of us asked him if he would try to eat or drink something.

Late that afternoon after the MRI, he requested and finished off some chicken soup, some ice cream, and a Diet Coke, and a few hours later he ate some mashed potatoes and baked apples.  Each bite he ate gave me a little more hope that he would pull through the raging infection, of which we were still waiting to learn the source.  

Nurse Meredith, aka Angie, was with us again for the 7 p.m. to 7 a.m. night shift that second night.  She and Dad chatted about how much she liked her job and, when she told him that she was from Bowling Green, Kentucky, about how great Corvettes were.  When she commented that she thought he was doing much better than the night before, he nonchalantly said, “Yeah, I was supposed to die last night, but I didn’t so I know I am going to get better.”  We exchanged looks over his head and hoped silently that his prediction was correct.

Some Christmas carolers came by and stood in the hallway just outside the door to our room singing, which got a big smile from Dad.  By bedtime that night, he reported that he didn’t have any pain except for his throat and the bedsore hurting, the latter for which a special air mattress had been brought in for him.  

My sister J and I stayed with Dad that night.  Not long after we had turned the lights off in hopes that it would help him sleep, he got a really frightened look on his face and started gasping for breath.  His heart rate shot up; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Over and over, Dad told us that he was freezing, and then he started saying things that we didn’t quite understand.  Despite the temperature of the room being warm and several blankets being placed over him in the bed, his teeth were chattering so much that we had to strain to understand him.  “I think I’m dead,” he told the three of us, “and I’m starting to wonder if y’all are dead too.”

We assured him that all of us including him were ok, but he insisted that the reason he was so cold was that he was dead and that he thought we were cold too since we were also dead.  “Is this what it’s like when you’re dead?” he asked. “I don’t want it to be cold!”

And then he said something even more puzzling:  “I see Hattie, Mattie, and little Sally over there – are they cold, too?” 

Wanting so much to help him, we looked at each other with wide, scared eyes.  The three of us were almost lying on top of him trying to warm him up and to calm him down.  After hearing him repeat the list of those three names a few times, it dawned on me that he was naming three dogs that had died years ago, and he was convinced that he could see them. Realizing that neither verbal nor physical comfort measures were not going to be effective in battling the panic and the terror, Meredith raced to get a sedative for Dad, and, five minutes later, he was resting soundly.  

Afterwards, Meredith went back to the nurses’ station, and my sister and I sat in the dark room and watched him sleep.  We didn’t know what to make of the episode or what had caused it to happen.  Dad slept for several hours, but we didn’t – the terror he had been experiencing had been transferred to us.

The oncologist made his rounds before the sun was up on Thursday morning; he brought with him the news that, although slightly improved, Dad’s blood counts were still dangerously low and thus he would be getting a transfusion later in the day.  Unlike his previous proclamation (which I had written down word-for-word in the Notebook) about Dad getting “exponentially better,” he said that recovery for Dad was going to be a roller-coaster ride, with improvements and regressions along the way, especially while we waited on the blood count to come back up.  

And then came the big news: the results of the previous day’s MRI.  Dr. O said that the tumor’s size was "about the same" as a month ago.  Given the extreme aggressiveness of the nature of GBM, that was considered to be very good news; the fact that the tumor hadn't grown was a sign that the treatment was working.  In even better news, fewer "areas of enhancement" had shown up on the MRI. which indicated there were fewer blood vessels going to (or "feeding") the tumor.   

“That is exactly the goal of Avastin,” Dr. O proclaimed, but then he went on to say that Dad would have to continue to stay in the hospital until his blood count improved and that it was too soon to predict the timing for the next dose of Avastin/chemo because that was dependent on the blood count.  He told us that he would be off-duty for the three-day holiday weekend but that another oncologist in his practice, Dr. M, would take over in his absence.  Dr. O listed his goals for Dad for over the long weekend as having an improved blood count, eating more, requiring less pain medication, and getting up in a chair.

“Just hold on until after the transfusion, and you’ll have more energy,” he said.  As he turned to leave the room, Dad, who was so exhausted that he had kept his eyes closed during the entire interaction, piped up with a cheery “Will do, Doc!  Thanks for coming by!”

Right after the doctor left, a physical therapist came by, and, with the help of a staff member named Dave whom my sister and I thought was a nurse, she and I helped Dad sit on the side of the bed, which was scary and totally exhausting for him.  Dad said he felt like he was going to fall, and, despite reassurances from all of us, he held on to our arms with a white-knuckled grip. Just moving from one position to another was a MAJOR effort for him, but, with his “no-pain-no-gain expression” on his face, he did it for about three minutes before he had to lie back on the bed to rest.  

When Meredith’s shift had ended at 7:00 that morning, a nurse named Leah had been assigned to Dad, but for some reason there was a change in staff late that morning.  Leah, although not warm or friendly like Meredith, had seemed efficient; the new nurse Jessica had started off acting just short of what I considered rude.  Of course, it was one thing for someone who was supposed to be taking care of Dad to be brusque with me, my sisters, or our mom, but it was an entirely different story when that impertinence was imposed on Dad.  

Helpful Dave brought ice chips, warm blankets, and Diet Coke for Dad throughout the morning.  Dad, of course, thanked Dave but didn’t notice Jessica’s bitchiness behavior, but we did, and, after several snippy comments from her and a few long delays in responding to fairly simple requests that directly related to the provision of patient care, I told the nursing supervisor that I didn’t think it was a good “match.”  

“We’re short staffed,” she informed me, as if that made the level of care acceptable.  

“What about Dave, the nurse who has been helping the other nurses all day?” I asked.

“Dave is our unit secretary,” she told me curtly.  “Really all I can do is for me myself to provide back up for Jessica as needed for the rest of this shift.”  Um, ok then.

Lunchtime brought some chicken soup for Dad, which he ate with assistance, and also a follow-up visit from the Infectious Disease doctor, who informed us that two “bugs” had been identified in Dad’s blood samples, both of which are typically found on the skin or in the mouth or digestive system of people but which, in a person like Dad with a compromised immune system, can go haywire and result in an infection anywhere in the body, most commonly in the lungs (pneumonia), in the urinary tract, in a wound, or in the throat.  The Infectious Disease doctor said that Dad could have infections in any or all of these and that the source was probably his own body.

Wow, I thought, we have put so much effort into sterilizing everything around him and limiting his contact with the outside world for fear that he would get sick, but the problem actually came from within his own body.  I wasn’t quite sure what to do with that information except to feel even more powerless against what was going on; despite our best efforts, the protective shield that I thought we had put up around him was eroding a little at a time.

Up Next … Part 36 – ICU 2.0

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

Hospice

I recently came across an article in the New York Times stating that Hospice services may be being misused in some cases.  Click here to read the article.

Of course, no one goes around saying they are fine with money or resources being wasted or a system being abused.  From my perspective, though, this article is an example of a very one-sided view, most likely one by someone who has never personally had to care for a critically ill loved one or to have support from Hospice.

What this article seems to be saying is that when a person who is on Hospice survives past the six-month point, he or she was not really a good candidate for the services received under Hospice care, and that they, their family, and/or the medical workers on their case either made a mistake or committed fraud.

According to this article, 19% of people on Hospice end up receiving those services for longer than the 6-month deadline (pun intended).  As if that is a crime or something for those people to be ashamed of!

Anyone who ends up having to make the very difficult decision to bring in Hospice gets my sympathy; it’s a path down which none of us ever wants to go.  But I will also offer an empathetic sigh of relief and a sideline cheer on their behalf, too, because I have been there – and because I know that Hospice is exactly what the health-care system in our country should be like.   I know that Hospice can make a difference when nothing else can, not necessarily in the amount of time a person has left but in the QUALITY – and that’s what counts!!  In fact, not just in the quality for the patient but for the entire family.  And that will make a difference not just for those involved during the time the patient has left but for them for the rest of their lives.

There are a lot of things that are sad about the dying process, but what’s scary it is that we don’t know what to expect and we cannot control what’s going on.  We are running out of time to be able to interact with our loved one who is so sick, and we have no idea what to say or do.  We need advice, guidance, help, and support from someone who does know, and that’s what Hospice is for. 

In my opinion, Hospice is the very best of health care; it means caring for one’s whole health, physical, emotional, and spiritual.  And in some cases, I can see where having those needs met - and getting out of a germy, stressful hospital and doctor’s offices and sometimes even getting away from medicines and treatments that can cause more problems than they are fixing – can make a person BETTER, at least for a little while longer, maybe even longer than six months.

From my perspective, it makes no sense to then to punish or to invoke guilt on the person who is fortunate enough to eek out some extra time, or their families, or anyone involved in their care.  Rather, we should give them a big shout-out, throw them a party, or hold a parade in their honor, because obviously they made the right choice in choosing Hospice.

And here is one thing to which I can attest without a sliver of a doubt:  others of us, whose loved one followed a more typical pattern of Hospice which, according to this article, is surviving only 17 days after beginning in a Hospice program, made the right choice, too.

When Dad got so weak a couple of weeks after his second round of treatment, we took him to the hospital, fearing that he’d had a stroke, which is one of the potential side-effects of the medicine he was taking.  An MRI indicated that the growth of the tumor in his brain had been halted by the protocol he was on at that point, but his blood work showed severe infection in his bloodstream and an extremely compromised immune system.  Even after receiving lots of antibiotics, anti-virals, anti-fungals, and a transfusion of both whole blood and platelets, he was still so weak that he could hardly lift his head, talk, or swallow.  He wanted to go home, and we could plainly see that was the only real option for him at that time. 

Like many families in our situation probably do, though, we started out thinking that signing him up for Hospice was the same as giving up.  So we did what we had to do:  we took baby steps, cried a lot, took turns being strong and decisive, and forged ahead, as always, with a Back-Up Plan:  we told ourselves that we were just going to “use” Hospice to get him home so that he could get stronger.  We said to ourselves and to each other repeatedly that Hospice is revocable at any time, and we were on such good terms with Denial that we fully believed that we would probably revoke it once we got things under control. 

I have never seen someone as relieved as Dad looked when we told him that he was going home the next day.  He said “the best” would be if he could leave right that second, but “almost the best” would be when he got home the next morning.  He tried to negotiate just how early he could leave the next day, but, for logistical reasons, the time had to be 11 a.m.

He, of course, slept “zero,” as he liked to quantify things, the night before, par for the course for him because of the massive amount of steroids he was on, and he must have asked at least 50 times what time it was and if it was time to go home yet.  He was so wound up and anxious by mid-morning that the nurse at the hospital gave him a sedative, which knocked him out for the ambulance ride and for pretty much the rest of the day.  I was grateful for his sake for the former but disappointed by the latter; I had envisioned him coming into his house with the biggest smile on his face, finally looking happy and feeling like he was where he wanted to be. 

Thinking he would want to be in the center of the activity going on in the house, we had opted to have the hospital bed set up in the den instead of the master bedroom. When he woke up, he was very disoriented.  He said, “You promised I was going home!” because he knew he wasn’t in his bed or in his bedroom.  He was trying so hard to get himself together, to rally, and to feel lucky or even just not to feel terrible and terrified. 

The Hospice nurse came soon after Dad got home, and my mom, my sisters, and I took turns sitting at the dining room table with her and sitting with Dad.  We wanted him home, but we still weren’t sure the Hospice decision was the right one.  More than anything, we wanted to protect Dad, and we thought that part of doing that was not letting him think we had called Hospice because we had given up Hope.

But as we exchanged information with the nurse, we realized that we weren’t giving up, we were gaining – gaining some control over an out-of-control situation, gaining knowledge, gaining allies in meeting our goal for Dad, which was keeping him from hurting or being afraid.  We had found the Captain of the ship that our Plan had been lacking, and that made such a difference.  We were still heartbroken and in shock, but we were in this together, finally with exactly the kind of support needed by Dad and us, and we were as armed as we could be to care for him.  Instead of having to fight, beg, question, and monitor as we did in the hospital, we were able just to hold his hand and talk to him even when he couldn’t talk back anymore.

When all the world is a hopeless jumble
And the raindrops tumble all around,
Heaven opens a magic lane
When all the clouds darken up the skyway,
There's a rainbow highway to be found
Leading from your window pane
To a place behind the sun,
Just a step beyond the rain.

Although there are obviously things we would change about what happened during Dad’s illness that might have contributed to his rapid decline as well as other things that didn't hurt him but didn't help him either, we were so very lucky to have had a fantastic Hospice service to help us in the last week of Dad's life.  Even though it didn't change the outcome of what happened, it did change the quality of how it happened for him and for us.  

Dad was an outstanding mentor and had a great way of leading and teaching others with positive perspective and humility, and he died exactly that same way only five days after he came home on Hospice, selfless and courageous as always.  I wish so much that we could have been among those whose loved one had to get an “extension” on Hospice services because they’ve outlived the six-month time allowance, but of course we didn’t want Dad to suffer any more than he already had, and, with the support of Hospice, we realized that it was his time to go on ahead.  We are forever changed by being with him when he was sick and when he left this world, but not nearly as much as we are by having him to shape our lives over the years.

One of Dad's all-time favorite songs, Judy Garland singing "Somewhere Over the Rainbow."