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 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

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

Part 32 – Falling

Continued from Part 31

Falls separate people in a very literal way: the careless from the careful, the clumsy from the coordinated, the weak from the strong, the unlucky from the lucky, and - as in our case - the unhealthy from the healthy.  After a fall, one's first instinct is to reassure everyone, including himself, that it was "no big deal," that he is "just fine."  It is natural for the one who has fallen to want to “shake it off” and forge ahead as if it didn’t happen at all.

This is an exceptionally hard part of my family’s story to recount because it involves two falls for my dad that marked a turning point for him and for us, watershed moments when Dad stopped being embarrassed about needing help.  After the past couple of months of having given it his all to pretend that he didn't need assistance, he was completely drained, and it was the beginning of a struggle from which we just couldn’t disengage. It was heart wrenching and very sobering to see Dad’s acceptance of help after these falls and to see that he was starting to understand just how sick he was.

No one involved in what happened with Dad over the next couple of weeks could give any reassurance that things were ok or any explanation as to why he had gotten so much worse or why he couldn’t recover.  We were on our way to the front lines of the battlefield, and we were soon to learn that we had only thought we knew what difficulty and devastation were.

On the Monday before Dad was scheduled for an MRI on Tuesday and Round 3 of chemo and Avastin on Wednesday, my sister stayed at our parents’ house with Dad, and Mom went out for a break with her two sisters.  In a few hours’ time, Dad got up and sat for awhile in his recliner in the den and ate a few bites of food at my sister’s insistence, and then he said that he needed to get up to go back to the bathroom.  As we had been doing over the past several weeks to help Dad with his balance whenever he walked, my sister held onto the waistband of his pants from behind him to try to steady him.  As she recounted later, he seemed more unstable and weaker physically than ever before.

A few steps into the hallway, Dad lost his footing and fell to the ground just behind the couch.  My sister cushioned his fall with her body, turning the fall more into more of a controlled collapse, but once Dad was down, he couldn’t get up.  He tried, she tried, and they tried together to figure something out, but nothing worked.  In the midst of their efforts, the doorbell rang, and my sister could see through the windows by the front door that it was Dad’s swim coach Ashley.  She motioned her to come in, and together the two of them were eventually able to get Dad up using the back of the couch for leverage.  After they helped him back into his recliner, he strangely acted like nothing had happened, even though he and my sister both had been in tears and had spent at least half an hour feeling utterly helpless on the floor before Ashley had arrived.  Dad had great admiration for his swim coach, and my sister said later that she thinks the fact that Ashley was there was the only reason Dad was able to muster enough strength, courage, and perseverance to get up and act like he was ok.  

After Ashley left, the Occupational Therapist came for a therapy session that had been scheduled the day before.  My sister told the OT what had happened, but he really didn't seem to understand and/or care.  He had Dad do some hand exercises from the recliner in an extremely short therapy session in which Dad was very obviously totally disinterested and disengaged.  My sister asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed.  The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak.  They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom.  Once they got him back into the bed, Dad immediately fell into a very deep sleep.  It was so undisturbed and so very uncharacteristic for Dad at the time that while he slept over the next few hours my sister sat in the bedroom on the floor and watched his chest rise and fall the whole time.  At one point, she took a video of Dad’s breathing pattern on her cell phone and then called me to tell me that something just seemed really, really wrong.  (By the way, the therapist hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.)

I had planned to arrive at my parents’ house the next morning, and, since Dad wasn’t hurt physically, we decided to just let him rest until then so that the three of us could get him to the appointments as scheduled over the next couple of days.  In full Bargaining/Denial mode, I told my sister and myself that Dad had just worn himself out with all of the activity over the past couple of days and that he just needed some extra rest.

That night, as was the routine during that time, Mom took the first shift with Dad, talking to him about the plan for the next day which included the MRI, the visit with the neuropsychologist, and the candlelight church service.  Dad was still very anxious about the MRI but seemed to accept that we would be right there with him when the results were read the following day and that we just needed to get through it and then go from there.  

Around 3:00 a.m., Dad informed Mom that he needed to get up to go to the bathroom.  She turned on the light and then helped him get up with the walker and into the bathroom adjoining their bedroom.  Dad had been soloing in the little “toilet stall” room and did the same that night, but after going to the bathroom he lost his balance.  He fell against the wall and slid to the ground.  Mom yelled for my sister, who rushed in to help.  It was a repeat of the afternoon fall, except that this time even two people wasn’t enough to support Dad.  They tried different maneuvers and various strategies but nothing worked.  Finally, in desperation, they called 9-1-1.

Thinking that Dad would resist having other people come in to help, neither my sister nor Mom wanted to tell Dad that they had made the call.  The ambulance arrived in a matter of minutes, and, when Dad saw the paramedics, a look of sheer relief washed over his face.  Two strong men carefully picked Dad up and put him back onto his bed.  They checked him over and declared that he somehow didn’t have any breaks or bruises, but after some discussion it was decided that they should transport him to the hospital due to concerns about the decline in his physical status that seemed to indicate a worsening in his medical condition. 

Mom rode with Dad in the ambulance; Dad’s anxiety actually seemed to be mitigated by the decision to go to the Emergency Room.  My sister called me and told me to meet them at the hospital instead of at my parents’ house as planned, I called our other sister, and we each began to make our way back to the hospital.

Up next ... Part 33 - Hospitalization 2.0

Part 31 - Battling

Continued from Part 30

During the 75 days that Dad was sick, there were parts of him that were still the same from our pre-cancer days, but other things were very changed.  The help that he needed was all-encompassing, exhausting, stressful, sad, and draining, but so worthwhile; the only time while he was sick that I felt like I wasn’t free-falling was when I was right by his side.  His needs and what felt like the constant activity and vigilance that were necessary were very effective at counteracting our own panic and the sadness and, truth be told, in a weird way, the reality of it all.  When I was with Dad, I couldn’t worry about Christmas shopping or paying bills or much of anything else; it took 100% of my focus just to meet his needs.  When there were two or more of us there with him, one person was able to be right with him, and the other person could get a little sleep, make something in the kitchen, sort the medications, make phone calls about Dad’s care, do laundry, or work on setting up something else for Dad like the ever-changing therapy schedule, a doctor’s appointment, or the rare outing in the community.

On a daily basis, Dad was battling almost constant headaches, overwhelming fatigue, loss of appetite (he said, “I’m ZERO hungry!” whenever food was offered), and a pervasive feeling of being cold (he frequently asked if the heater was broken or if someone had turned down the thermostat, even though it was set on at least 75 degrees).   In typical form, though, Dad mustered his strength and pushed on, as did we.

On the Sunday before the MRI and Round 3 were scheduled, my sister arrived at my parents’ house from California.  Dad had been talking about wanting to go to see a movie for a while, and so my sister and Mom called the movie theater nearby and spoke to the manager about the accessibility of the restrooms there.  Like the trip to Duke, it wasn’t enough for Dad just to have access to a bathroom with a stall with grab bars; he needed constant cueing to use the walker and to guard against other obstacles like a wet floor and thus wasn’t safe unless someone could directly supervise him at least in getting close to the toilet, from the toilet to the sink, and from the sink to the door to exit the restroom.  As we had discovered on the way to North Carolina, most places don’t have single-stall type of facilities, and neither did the theater.  When the situation was explained to the manager, though, he offered to supervise Dad on his trip into and out of the men’s room, and so the “Let’s Go To The Movies” Plan was put in motion.

Mom purchased tickets online to avoid a wait in the cold, and they loaded up into the car.  In another example of a change in his usual personality and tendencies, though, when they pulled up in front of the theater, Dad announced that he didn’t really want to go.  Concerned that he would regret his choice later, Mom and my sister tried their best to talk him into going in, but to no avail; thinking that it would lure him in, Mom even went into the theater and bought a tub of popcorn – Dad’s favorite thing about going to see a movie – and brought it back out to Dad in the car.  Dad was insistent, though, and so the mission was scrubbed.

Once back at my parents’ house, the strain of the day’s events and the sadness of everything going on was evident in Dad; tears flowed as he told my sister and my mom that he didn’t think he would ever be able to do the things he wanted to do again.  Like the workings of his memory and the sensation in his left arm that seemed to come and go and that we just couldn’t really predict or comprehend, Dad obviously had a lot going on emotionally.  We were right there with him to support him, but he needed more. We felt like we were paddling against the tide, with no lifeguard in sight.  

When my sister called to tell me about the afternoon, I put a call into the oncologist.  I told him about Dad’s anxiety about the upcoming MRI scan, and he said that he would call in a prescription for an anti-anxiety medication to Walgreen’s.  I asked again about an anti-depressant for Dad, and the doctor said we could discuss that at the upcoming appointment.  I told him that we are all discouraged at the lack of progress.  He said he had been wondering about that too and that he wasn’t sure if the Avastin needed longer to work in this case or if there was some brain damage from before or during the surgery that was either irreversible or just taking longer to heal regardless of the Avastin dosage.  He said he was interested to see the results of the MRI scan, which we would go over at the appointment on Wednesday, and that he would speak to the team at Duke about the plan after that.

In the meantime, my sister had made contact with the neuropsychologist from the rehab facility, the tall runner-looking guy to whom Dad had responded so well before our trip to Duke, and the guy had agreed to work Dad in for an appointment right after the MRI scan on Tuesday.  With the MRI at the hospital downtown, the appointment in another part of town, and then the candlelight service at a church near my parents’ house that evening, it would be a very full day, but we were hoping for a good result from all three.

                       Dad loved "The Sound of Music," and this song makes me think about how

                          we felt like we were climbing mountains, fording streams, and following

                                    rainbows with all the love that we had, in search of a dream.

Coming soon ... Part 32 - Falling

Part 30 – Changes

Continued from Part 29

As we entered the second half of December, the tag-team effort continued, with one of my sisters or me staying with Mom and Dad almost every night so that Mom would have back-up support during the night and for as much during other times of the day as we could arrange.  One thing that I’m not sure I have explained clearly in this blog is the amount of one-on-one assistance and supervision that was required during the time that Dad was sick.  Physically, he needed help for everything, unless he was sitting in a chair or lying on the bed, and even then he wanted/needed to have things handed to him or arranged around him for safety and convenience.  One example of this that we learned through trial and error was how to position food and/or drinks so that spills, which were so embarrassing and frustrating to Dad, were less likely to occur.  Since he still had impaired sensation and strength on the left side of his body as well as visual-perceptual issues (he often didn’t notice things in the left side of his visual field), we had to place his provisions on the right.  Drinks were served in non-breakable, lidded cups, and food was given to him on a non-breakable plate or in a plastic bowl.  Dad didn’t seem to notice that we had rearranged the furniture so that the table that was previously on the left side of his recliner was now on the right side, and he didn’t say anything about how things were served or handed to him, which brings me to my next point … 

For as many changes as there were in Dad physically, there were even more changes in him mentally.  Like I've written about (here  and here), brain cancer is distinct; it's different from other types of cancers because it most often immediately affects one’s cognitive abilities, which alters the way information is received, processed, expressed, and/or retained.  And that, of course, influences very important things such as the person’s ability to fully understand the diagnosis, the prognosis, and treatment options, and this was absolutely true for Dad.

It also meant that Dad needed supervision 24 hours per day, something I’ve heard said in reference to plans of care for others who are very ill but with a different meaning in practice.  In the vast majority of other situations when around-the-clock caretaking is called for, there is one blaring difference as opposed to our experience:  the person who is ill sleeps - sometimes just at night, sometimes in a cyclical pattern for a few hours at a time, and sometimes even more than usual with lots of naps during the day after a decent night’s sleep - and understands that he/she should not get up and try to do things beyond their physical capabilities.  That was not the case with my dad.  Not only did he not sleep much, but it was not safe to leave the room or even to get in a short catnap oneself unless someone else was watching over him.  He did not remember or realize that he couldn’t do the same things in the same way that he used to do, and he did not have the foresight or the patience to ask for help or to wait unless someone was right there with him to remind or cue him.  Many times one of us would turn around to do something or go one room away for a minute only to find Dad trying to get up or, worse, already up either with or without his walker, a risk we were not willing to take.  We felt it was our job to guard over him and to ward off whatever danger we could, and this included protecting him from himself. 

As far as I could tell, Dad liked having my sisters and/or me there with him while he was sick, but he was very dependent on Mom; he wanted her to be right with him at all times and often got upset or anxious when she wasn’t able to be there.  In a statement that tore out hearts out, he said that he thought that he might not be around much longer and that he didn't like it when she left because he was afraid he wouldn't be able to tell her goodbye if something happened.  When he said things like that, it seemed like he did have a grasp on what was happening, but then he would say something about going to work the next day that brought the questions about his comprehension and memory back into play.  

The changes that we DIDN’T see in Dad were the ones we had been assured would happen soon after the Avastin had been administered, but, besides the beginnings of improvements in sensation on some parts of his left arm, we were seeing ZERO of the good changes from the much-touted Magic Bullet.  

The third week in December was set to be a busy one for my family:  Dad had an MRI scheduled for that Tuesday and also wanted to go to a Healing Service at a church near my parents’ house that night.  Round Three of chemo/Avastin was scheduled on that Wednesday.  We had written these things down on the Dry Erase board along with notes about which of us would be there on which days and the therapy schedule, but it didn’t seem to help much at all.  Time and details were not sticking in Dad’s short-term memory, yet I think he knew these things were important and so he frequently asked about what was on the agenda for the week, the day, and even the next hour.  The questioning, the confusion, the anxiety, and the support that Dad needed were all just part of the whirlwind of activity that was going on around the clock at my parents’ house during this time.  

I was hanging onto to Hope and whatever else I could for the time being, but I couldn't help but feel that we were in the middle of the storm before the storm.  As one of my sisters said in an email about our situation at this point:  “If Dad could think/process/remember the way other non-brain cancer people can, we could talk to him more about his Bucket List and how long to continue treatment and all those other so important things.  I've been reading too many library books about terminal cancer and living life to the fullest, etc, etc.  I hate to think that Dad knows -- somehow subconsciously or something -- more than we do.  The MRI coming up is so freaking scary.”

Up Next ... Part 31 - Battling

Part 29 - A Slippery Slope

Continued from Part 28

With all that was going on with Dad during the first couple weeks in December, the days and the nights blurred together, but we never lost sight of the date circled in red on the calendar: the day for Dad to get Round Three of his treatment.  After the debacle in the Chemo Suite during Round Two, I called and spoke to the oncologist about planning for a smoother appointment the next time around.  He advised me that the date we were schedule to come in, the Wednesday before Christmas, was one of the busiest Chemo Days of the year and that, if we wanted efficiency, we should get there as soon as their doors opened.  Because sleepless nights resulted in energy-sapped mornings for Dad and for us, I knew it would be a challenge to get out of the house and to the appointment that early.  I didn’t want a repeat of the noisy, over-crowded Chemo Room or, even worse, the delay in even getting the drip started like last time, though, and so I agreed to the early bird time slot.

I also reminded the oncologist that the protocol from Duke called for an MRI at the one-month mark after the treatment had been started, which meant that Dad needed to get in for the scan right before or after he got Round Three.  “How about the day before?” the doctor asked, and I put that on the books as well.  The week before Christmas would be very busy for my family, I thought.

On one hand, I dreaded Chemo Day, but on the other hand I looked at it as something we could tick off our list on the road to getting Dad better.  I looked at it like a Triple Letter Day on our Scrabble Board, a chance for us to score BIG TIME, and I was almost holding my breath in anticipation of the Big Payoff we had been promised from Avastin the Magic Bullet.  

I had been making the three-hour drive between my parents house and mine about twice a week, staying one or two nights each time.  As arduous as it was to get there to help with things at my parents’ house, to cover the distance in a state of constant sleep-deprivation, to try to keep up with whatever I could at home, and to carry on with my work responsibilities during this time, it was all I could do; I felt like I was free-falling whenever I wasn’t with Dad, and I felt physically ill when I didn’t know exactly what was going on at my parents’ house.  It wasn’t that I thought that I needed to spend as much time as possible with Dad in case his time was limited; really, that thought didn’t enter my head because I was convinced that this difficult time period was just a bridge over troubled waters, an obstacle course through which we had to maneuver in order to get back to Real Life.  

The week before Dad was scheduled for Round Three, I spent the night and most of the next day at my parents’ house.  I had planned to leave there that evening so that I could get home and go to work the next day.  However, when I went outside to put my suitcase in the car, I saw that a solid layer of ice had formed over the few inches of snow already covering the streets.  As I defrosted my car, I reasoned that, once I got out of the neighborhood and onto streets with more traffic, the roads would have been salted and cleared by the other vehicles so I would be able to make it to the home safely.

I told Mom and Dad goodbye and slowly drove out of their neighborhood and onto the winding, two-lane road that lead to the interstate.  The second street was hilly and shaded, though, and the ice was much worse.  Cars in front of me were sliding and skidding, and, as I neared to the top of a big hill, I saw a fireman waving to get my attention.  I rolled down my window to see what he wanted, and he told me that they were closing the road behind me because it was considered to be impassable.  I eased my car forward, and my tires started spinning, preventing me from continuing up the hill.  “Should I turn around and go back down the hill to get back to my parents’ neighborhood?” I asked him through the still-open window.  “Can’t advise you,” he said. “Liability.”  OK, then.

I did a three-point turn-about and started back down the hill, but my tires lost traction, and so I slowly pulled onto the narrow shoulder of the ditch-lined road.  I asked the fireman who was still just standing there watching for help, and he said again that he was not allowed.  I had a terrible sense of foreboding, or maybe just a sense of duty, and I was suddenly so desperate to get back to my parents' house.  Frightened and panicky, I speed-dialed my husband and tried to explain to him what was happening.  “Just put the car in low gear and go ahead slowly,” he said.  With my stomach in knots, I clenched the steering wheel with both hands and eased down the hill, and, after taking almost 30 minutes to cover the two miles back to my parents’ house, I breathed a huge sigh of relief as I pulled into their driveway.


I went back inside the house and told them what had happened.  “Wow! I’m glad you’re ok!” Dad said.


I felt my fear melt away, and I asked him, “Want to drink a beer with me?” 


“I thought you’d never ask!” he said with a big smile.

Coming next ... Part 30 - Changes