Part 41 – The Turning Point

Continued from Part 40

I suppose there comes a time in the life of almost every person with a terminal illness when they and the people around them realize they have turned a corner that is not for the better as they had hoped.  It’s that day, that hour, that moment when the stakes are changed and so is one’s perspective, when the focus of treatment becomes different from when it was a Cure.

I think that Turning Point in Dad’s illness was different for my mom, for each of my siblings, and for me.  For Mom, I think it was on our trip to Duke, first when she realized that Dad’s concept of time, which had always been absolute in him, was totally gone, and then when we got to the Brain Tumor Clinic and she noticed that Dad was the only patient there with his level of impairment.  As we rolled down the interstate and then as we rolled his wheelchair into the clinic the next day, her hope for a Cure was dashed.  (Side note:  People around that time kept telling us that we just needed to get used to a New Normal, and every time I heard that, I wanted to scream, “TO HELL WITH THE NEW NORMAL!  I WANT OUR OLD NORMAL BACK!”)

Our brother Lee has said that he saw the changes in Dad as so blaring when he saw him around Thanksgiving that he felt in his gut that Dad was not going to get better.  

For my sister Jennifer, the Turning Point came on the afternoon when she was at our parents’ house alone with Dad before his second hospitalization -- not when he fell, but after that, when he was in the bed, looking so frail, so helpless, and with his breathing so labored that she felt compelled to videotape it so that she could believe it, process it, and document it.

The Turning Point for my sister Nancy came a little later in our story, on the day after we brought Dad home from the hospital for the last time, as she listened to his voice get weaker and weaker and as she watched him, wrapped in blankets as if he were in a cocoon, being picked up by our husbands so they could move him from the bed to the couch.  He was so afraid that he wouldn't be able to communicate with us for much longer.  We were so afraid that he would fall off the couch because he could hardly move and that it would hurt him to move him.  We were all just so incredibly afraid.  

The Turning Point for me came as a result of a one-two punch on the second full day after Dad was moved out of the ICU into a regular room, three days before New Year’s Day and two days before we took him home.  The oncologist came by for his morning rounds and told Dad “the only thing in the way of going home for you is your strength.”  He ordered more OT and PT, and thus the gauntlet was thrown down; so depleted and yet so determined, Dad began talking about how he was going to exercise and eat,  “even more than before,” he said.  “I just want to do whatever it takes so that I can go home!”  

That afternoon, the OT stopped by and, with Dad lying in the bed, had him do 15 minutes of arm exercises (“Is that IT??” I wrote in the margin of the Notebook when I realized the session was ending after that.), and then the PT came in and helped Dad sit on the side of the bed for ten minutes.  After she had left, Dad realized that was going to be the sum total of his rehab activities that day, and he said, “I really think if I am going to have any chance of getting out of here, I should get up out of the bed.”  I summoned the nurse and a nursing assistant and told them of our plan.  Both were hesitant and doubtful, but, I thought, they don’t know my dad and they don’t know me – we ARE going to make this happen.  

Gritting his teeth and with almost total support to keep his legs from buckling and then with full support to slide his feet one at a time across the floor, Dad made it from the bed to the hospital-grade recliner before collapsing into the chair.  “Let’s see if you can stay up in the chair for 30 minutes,” the nurse said, as she and the tech left the room.  The next half-hour seemed excruciatingly long; my sister and I tried to cheer Dad on while he gutted out each minute.  He said he was cold and that he felt “achy all over,” and then, when his time was up and after we had helped him back into the bed, he got a terrible muscle cramp in his thigh and hip.  We could actually see the muscles contracting as Dad writhed in pain after the transfer.  We tried massage, we tried repositioning, we tried stretching, we tried a heating pad, and, finally, amidst deep and wounding pain, he begged for medicine.  The orders on the chart didn’t include anything that would even touch the pain.  DAMN the process that it takes to have to call the doctor to get permission for pain medication for a terminally ill patient.  Isn’t losing control and slipping away torture enough?  It took well over an hour to take away the pain from that horrible cramp in Dad’s muscle, and, as we learned over the next few days, the trauma of the episode could not be erased from his memory, taunting him and making him afraid after we left the hospital that we would not have enough medicine to temper his agony if the pain came back. 

Despite the pain and exhaustion, Dad took in a lot of calories that day, so much that by that evening he was nauseous from having eaten so much more than he had been used to eating.  When the dinner tray came that night, he said with a mixture of dread and fear in his voice, “Oh, no!  Not food again! I can’t stand eating – it makes me hurt worse!”

Watching him that day, I could see the anxiety and the weight of the burden of the task that he saw before him; eating had become not just an obligation and an encumbrance but an insurmountable challenge for him. Over the course of the days before, he had started apologizing and making excuses about not eating whenever I walked into the room, and, when I saw the deep remorse and the sorrow in his eyes, I knew it was not really a choice that he could make anymore. His body just could not do it. “The Deal is off,” I told him that night with tears in my eyes.  “I am so proud of you for trying so hard to eat, and from now on you can eat whatever you want, whenever you want, or not.” 

“Will I still get to go home, though?” he asked me earnestly.  

“Yes, Dad,” I told him.  “I just don’t want you to worry anymore.”  And then I turned away from him to hide the flood of tears that streamed down my face, an outpouring that would go on for the next week as we made the arrangements to bring Dad home, as we cared for him at home as his condition continued to worsen, and as we watched him slip away.

Coming Soon ... Part 42 - Gearing Up

Part 40 – Supposed to Be Better

Continued from Part 39

And so the New Deal was struck, the PICC line was placed, and – thankfully, I thought – our regular oncologist was scheduled to come back on duty after the long holiday weekend.  

The kids made posters and signs for Dad, which we taped all around his hospital room.  Our focus became encouragement, even more than before and even over medical intervention, and I believed that together we could WILL Dad to get better.

Making "We love you, Gramps!" signs

Overnight at that point, Dad’s emotions went from worry and sadness to anger to determination, with the latter aimed at eating.  Dad talked almost constantly about trying to eat, at one point even saying that he felt like his appetite would come back if he could just go out to eat. (Luckily, he acquiesced in that effort and agreed to eat some food that we got “to go” from a restaurant outside the hospital.)  The PICC-line was being used for blood draws and IV meds, but, when we asked when the supplemental feeding would begin, the night-shift nurse told us it wouldn’t be until later in the day at the earliest because a “nutritional support” consult had to be completed first, and she added that, if Dad continued to eat like he had been overnight, “the port probably wouldn’t be used for nutrition because it’s better for him to get calories by eating.”  

Right at 7 a.m., our regular oncologist came in to see Dad for his morning rounds, his first time to see Dad in four days. In what would become the second-to-most anger-inducing statement made around me by a medical staff member during the entire time Dad was sick (the first being said by the stand-in oncologist said on Christmas Day) , the oncologist jokingly said to Dad, “What happened? You were supposed to be better by now!”

Although I remember these words as if they had just been spoken, I don’t remember what I said back, if anything.  I do, however, recall what I WANTED to say:  “He was supposed to ‘get better’ from the surgery, from rehab, and from the Avastin!  We were supposed to be taking him to a Grizzlies game tonight instead of being here in the hospital.  We were supposed to have a memorable family celebration on Christmas at my parents’ house.  In fact, if we’re talking ‘what happened’s’ and ‘supposed to’s,’ he was supposed to live to be 100!”  There were so many things that were supposed to have been happening, but none of it was going according to plan, and at that point none of it even mattered; we just wanted the doctors to figure out how to get Dad feeling better.

After his opening statement, the oncologist looked at us sitting in the tiny, hard chairs around Dad’s bed in the freezing cold ICU room and said he wasn’t sure why Dad had been admitted to the unit in the first place.  He chortled at the surgical masks we were all wearing and said that, since Dad’s blood count was in the normal range even when he was admitted to the ICU, the neutropenic precautions hadn’t been necessary during any of the time we’d been there. 

With regards to the PICC line, he said, “That type of feeding will disturb blood sugar levels; it’s mostly sugar.”  I wanted to scream, WHY IN HELL ARE WE JUST NOW FINDING THIS OUT?  My blood pressure was rising by the second.  I so desperately wanted to keep liking this guy, I wanted to trust him, and I wanted him to come in and clean up the mess that I felt had been created in his absence.

The oncologist seemed to think that what had been being done while he wasn’t around was “overkill,” which of course pissed me off beyond belief.  (I don’t know if it made me madder to think that things weren’t handled correctly in his absence or just that he seemed to be second-guessing after his long holiday weekend.) He discontinued several medications and decreased a few others. He said he was adding a sleep medication and writing an order for anti-anxiety meds to be given as needed.  He said that he wanted Dad to go to a regular floor immediately, for his comfort and for ours and because he felt the ICU-environment “wasn’t working for him.”  (No shit, Sherlock!)  And then I asked him the question I knew Dad wanted me to ask the most:  “What’s it going to take for him to be able to go home?”  

“I want his blood pressure to be in a safe range, I want him to be getting up out of bed, and I want him to be eating regularly, and then I’ll discharge him.”  

“OK!” Dad said enthusiastically, as if all of that was easy.

At the time, I thought that the oncologist thought Dad was about to get better, and so I viewed these changes as a positive step in the right direction.  Looking back, though, I think at best the oncologist was short-sighted, under-informed, and/or thinking wishfully instead of really seeing Dad and his condition as they were; at worst the guy was throwing his hands up and had stopped seeing intensive intervention as being necessary or warranted.

By mid-morning, physical therapy had been ordered, the catheter had been removed, and Dad had been transferred back to the oncology floor.  I thought Dad would be encouraged, but he kept forgetting how much longer he had to be in the hospital and what had to happen before he could go home, and he was discouraged and disappointed each time he was told that he probably wouldn’t be able to go home for several more days.

Not long after we got to the new room, the Physical Therapist came in, and together she and I helped Dad sit up on the edge of the bed for six minutes, an effort that completely exhausted and dispirited him.  Following that, someone from Pharmacy came in and told us that TPN feeding would begin to be administered through the PICC line later that evening.  When I pressed her for details as to why it was going to have been more than 24 hours after the line had been placed before the supplemental nutrition would be started, she didn’t really answer the question but did enlighten us to the fact that, evidently as was standard for all patients who’d just gotten a PICC-line, Dad would be “started slowly” on the TPN feeding, at first getting 700 calories per day and then building up to a maximum of 1000 calories per 24 hours.  This was NOT what we had been led to believe before the line was placed.  We were told that the PICC line would provide an opportunity for much greater caloric intake.  I was enraged, but I gritted my teeth and stayed focused on Dad.  What was done was, well, done, and maybe, I reasoned, the extra calories that he could get that way would help him get strong enough to get the hell out of that place.

For the first several hours that we were in the new room, the nursing staff seemed to struggle to accommodate Dad’s needs.  Because it was still considered a “holiday week,” the regular oncology floor was shut down, and we were actually on the bone marrow transplant ward.  Apparently, the nurses on that floor weren’t at all used to patients with neuro-like problems; most of the other patients there were independently walking laps with their IV-poles trailing them, and some were even going back and forth between their rooms and the little patient kitchen to get snacks or ice for themselves.  

But we were floundering.  The removal of the catheter seemed like excellent news at first, but it soon became a source of great distress for Dad and for us.  Contrary to the oncologist’s apparent idea that Dad would regain his mobility and his strength as soon as he got out of the ICU, Dad, of course, was still bedbound.  In fact, he couldn’t even move himself at all in the bed, much less sit up or stand.  And thus maneuvering to use the bedpan or the urinal was difficult, to put it mildly (and, at that point, the idea of his using a bedside commode or getting up on a walker to make it to the toilet in the bathroom seemed like looking at the finish line of a marathon from the vantage point of mile one).

Humiliatingly and frustratingly to him, Dad had more than one mishap with the urinal.  We were ready to do whatever it took to help him, but at the same time we wanted to try to preserve whatever was left of his dignity.  When Dad’s sheets got wet the first time, I pushed the call button, and, when we hadn’t gotten a response more than 5 minutes later, I went out into the hall, found the nurse, and told her that Dad needed to have his sheets changed.  “They’re in the linen closet,” she told me with a wave in that general direction, as if that solved the problem.

Fortunately, at shift change we were once again blessed by the Nursing Assignment Fairy; this time the nurse that swooped in to support us was John.  Dad was still "giving it his all" to eat; when we clued John into the fact that we were very concerned about Dad’s caloric intake, John offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar).  Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.

My 16 year-old daughter and I stayed with Dad for the first shift that night; Dad chatted easily with her and even said, “If you can find some popcorn and a Diet Coke, I wouldn’t mind sharing it with you while we watch something on TV.”  With John’s help, she procured the snacks, and together they watched “American Chopper” and then a show about hair transplants while he quizzed her about her plans for college.  

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from the bed sore on his lower back had continued to plague Dad.  John was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets.  He wasn’t just acting as a nurse; he was also a teacher and a friend.

About 9 p.m. that night, John came in to give Dad his night meds, which, without notice to us by the doctor, had been changed to include a psychiatric medication called Restoril.  While I wanted Dad to be able to sleep at night, I was very concerned about this choice of medication because I knew that it also affected the muscles and of course alertness and that it could also have several side effects for someone as sick as Dad was.  I was also angered that the orders had been changed without any type of discussion with the doctor.  It was just one more example of the mis-communication (or non-communication) and the half-assing that was going on WAY too often.

Dad swallowed that pill and his anti-seizure pills, and, shortly thereafter, he began to get groggy.  His voice got so soft that we had to lean in close to him to hear him; with tears in his eyes, he said he wanted to be sure that Mom knew how much he loved her and that he couldn’t make it without her.  He patted the space in the bed beside him – his sign for “I want someone to lie beside me” – and my daughter carefully hopped into the bed and tucked in next to him as he drifted off to sleep. About an hour later, my sister Jennifer and her husband arrived for their shift, and, without saying a word, Jennifer and my daughter seamlessly switches places without disturbing Dad.  There would be more sleeplessness, more anxiety, more struggles with the urinal, and more medicine that night for Dad, but at least he knew beyond a shadow of a doubt that his family was there with him and, despite what was going on with the medical staff or anything else, that that’s where we planned to stay.

Remembering the days in the ICU and then in that room on the BMT floor, I remember so well feeling so impotent to stop what was happening or to do anything that truly seemed to be helping Dad.  I am certain that the care at that hospital in general must be better than what we experienced, but, except for the few instances of competence and compassion from a few member of the nursing staff, it feels like Dad's care was awful from the moment he was wheeled into the ER.  Having worked in health care for so long, I know what can sometimes happen – arrogant doctors shuffle in and out, people just work their shifts and do the bare minimum, revolving staff members see patients (and their families) as a short time problem to endure.  It’s not right; it’s not fair.  But Dad had been caught in the crossfire just the same.  

Coming Soon ... Part 41 - The Turning Point

Part 39 – The New Deal

Continued from Part 38

After the procession of doctors that came to consult on Dad’s case on the afternoon of Christmas Day, Dad saw me crying.  “What’s wrong?” he asked me, with alarm in his voice.

“I’m just trying to figure out what to do to get you better, Dad,” I told him.

“Have you come up with anything?” he said hopefully. I sat down on the edge of his bed, looked him in the eye, and said, “I think you have to start eating, Dad.  I think you haven’t been taking in enough calories to get stronger.  I think you need to take control of your recovery by finding a way to make yourself eat.”

The room was quiet for a minute as Dad considered what I had said, and then he proclaimed, “OK, then.  It’s a deal.  I promise; I will start eating more, and then after that I can go home, right?” 

“That’s right, Dad.  It’s a deal.”  Through tears, I told him goodnight, and then my sister Jennifer took over; I was planning to be back early in the morning so that I could catch the doctors on their morning rounds.

Dad was chatty overnight; despite saying many times that he was very tired, as usual he did not sleep at all.  He said he realized that he was confused and that he didn’t want to tell the doctors because he thought then they wouldn’t let him go home.  He dutifully ate some graham crackers and peanut butter and then some ice cream; it was plain to see that the effort he had to exert just to chew was exhausting to him.   

Halfway through the night, my sister Nancy took a turn with Dad.  “He is trying so hard to eat,” she wrote in the Notebook.  Dad told Nancy that earilier that night he'd been at the hospital all alone; of course, she told him that he hadn’t been by himself, but it still made us so sad to think that he didn’t realize we'd been right with him the whole time.  “I am very concerned about how sick I still feel,” he said. “I don’t feel like I’m getting any worse, but I’m definitely not any better, either.”  He told Nancy that he couldn’t wait to see how proud of him I was when I found out how he had eaten during the night, a comment which, when I look back at it now, almost breaks my heart.  I can only hope that he knew that I already was as proud of him as I could possibly have been for so, so many reasons and that he didn’t have to strike a deal or hold up what he thought was his end of the bargain for me to be proud.

I got back to the hospital just as the sun was coming up, and right away Dad told me to write down a list of things that he wanted to remember to ask the doctor, most of which centered around the fact that he wanted to go home.  He said he knew that he needed to continue to “eat better,” and he listed several foods that he said he would try to eat that day, including toast and grits, a Diet Coke and a grilled cheese sandwich from Sonic, and a hamburger with mustard.  “No cheese and no mayo on the hamburger,” he said. “Those have TONS of calories.”  

“But Dad, we’re really wanting extra calories for you now,” I reminded him.

“Well, I guess I’ll have cheese on there, but I really don’t think it’ll be good with the mayo,” he said adamantly.

We got another visit from the consulting neurologist mid-morning that day; the doctor took about five minutes to do his “neuro checks” and then declared that Dad had “gotten better” since he’d seen him the day before.  (“Better in that he is slightly less confused, but not better in terms of pain, eating, or sleeping, plus now Dad is really starting to realize just how sick he is,” I wrote in the Notebook after the guy left.)  

Shortly after that, the stand-in oncologist reappeared and informed us that he was “pleased with the progress made over the last 24 hours.”  He said Dad should not be given pain medication for problems with sleeping; he would allow Dad to take Benedryl for sleep and anxiety problems but that was it.  He said Dad could probably be moved out of the ICU in the next day or two but that he felt Dad needed to "stay put for the time being" because he was still at risk of choking and because of the concerns about Dad’s heart.  Um, his heart???  The last we’d heard about the PVC’s on the heart monitor had been the day before from the cardiologist, who had seemed confident that there weren’t any true heart-related problems going on.  “I’ll have his blood counts rechecked today, too,” the guy said casually, still talking as if Dad wasn’t there and/or couldn’t understand what was being said, “but I expect to see improvement on those numbers too.”  And with that, he was off.

Shortly after that, the blood tech came in, and, as had happened a few times over the past few days, she had trouble finding a vein.  The nurse had informed us that long-term steroid use often makes the veins “brittle” and causes them to “roll,” both of which makes it hard to get a needle inserted.  Through the multiple needle sticks, Dad grimaced but didn’t complain, and eventually the technician had partial success; she was able to obtain one of the two vials needed for the labwork.  Dad winced as she put band-aids over the multiple places that she’d poked on Dad’s hand and arm; it was the ripping off of the tape and bandages that he hated the most, yet another thing for him to be anxious about and to cause him pain. 

About an hour later, an x-ray tech brought in a portable x-ray machine to take x-rays of Dad’s chest.  My sister and her husband helped the technician position Dad so that the films could be taken, and they noted in the Notebook that Dad’s rib cage was startlingly apparent.  Despite all of Dad’s talk about what he was planning to eat that day, he continued to say he was “zero hungry” and even "I don't think I can stomach anything.”  


"Sorry," he kept saying, with a guilty look on his face.  And despite the doctors’ positivity about his improvement, we didn’t see it.  We saw a man who was exhausted, frustrated, worried, and still somewhat confused, a man who was telling us that he just wanted to go home.

It was at this point that the idea of supplemental feeding was brought up.  As part of the steps we were discussing, this is what I wrote in the Notebook …

I did not want supplemental feeding to be started.  For the first time in Dad's treatment, there was disparity amongst us – really, at least from my perspective, between everyone else in the family and me.  That was its’ own special kind of hell.

I knew that each of us wanted more than anything to figure out some way to help Dad, and I realized that having a consensus was crucial.  It wasn’t that I disagreed with the fact that Dad somehow needed to get nutrition.  I just wanted SO MUCH for it to be in a typical way, through eating on his own.  I knew him as a super-determined man, a person who was more motivated and more physically fit than anyone else I knew, and I wanted him to be able to use his WILL and his STRENGTH to pull through this, even though I could plainly see that wasn’t possible.  I was horrified by the visual in my head of him having another procedure and of how helpless he was in the bed.  I didn’t trust anyone on the medical team, and I felt like even they weren’t on the same page about what the best thing to do to help Dad was.  I knew that inserting a PICC line would be risky and scary and painful for Dad, and so NOT what my strong, proud father would have wanted.  Hell, it’s not what any of us wanted for him, but we wanted him to get better more than we didn’t want him to have another procedure.

I see now that we were at different stages in our anticipatory grief, which, especially coupled with the worry and fear attached to the uncertainty of Dad’s condition and about our future as a family, was threatening in a way that even the cancer hadn’t been.  I saw the big picture, the goal of somehow stabilizing Dad, and I knew we had to get there in any way that we could; I just couldn’t get past the terrible gnawing in my gut that I couldn’t quite identify, and I couldn’t shake the feeling that Dad was slipping away or even that quite possibly he was losing his will to fight.

A PICC line, by definition and per its acronym, is a peripherally inserted central catheter.  It's like a large IV that goes in through the upper arm and is fed to the vena cava near the heart.  From the way that I remember it, the idea of the PICC line was first brought up by Dad’s ICU nurse, who, like everyone else around, was concerned about his nutritional status.  The nurse told us that an NG tube is usually the better option with which to start supplemental feeding but that, since Dad couldn’t even keep from pulling out the oxygen tube in his nose, she felt that a PICC line would be better.

As well, when considering an NG tube (which would go in his nose, down his throat, to his stomach), we also had significant concern about Dad’s medical history, which involved a botched sinus surgery by an ENT in the 1980’s that resulted in a orbital bone (under his eye) accidentally being scraped out during the procedure. The concern was that, instead of following the intended route, the NG tube would coil in the extra space in Dad's sinus.  [While I was in college, he’d had reconstructive surgery by another surgeon to hold his eye in its socket because of that screw-up by the first ENT, which sucked enough already, but I never dreamed that the malpractice from the first surgery would cause Dad more pain, more risk, and arguably a more rapid decline at the end of his life this many years later.  Remind me to find that ENT and punch him straight in the &^%@ one day.] 

Thinking back to the decision of whether or not supplemental feeding support should be provided for Dad and, if so, how it should be done, it seemed like we were getting multiple opinions from many different sources; I remember standing just outside the glass wall of Dad’s room in the ICU and, despite the fact that none of the doctors on the case had ever even broached the subject, listening as his nurse, another nurse, and the PICC-line nurse talked about how they thought he should get the procedure done.  “With a PICC line, he’ll be able to get nutrition and medications as well as blood tests done without additional sticks,” one of them offered.  Dad’s nurse said that she could call and get the oncologist to order the procedure if we wanted.  I wanted to scream, “NO WE DON’T WANT IT; WE DON’T WANT ANY OF THIS!  WE WANT HIM TO BE WELL!”  Why was this being discussed by the nursing staff and not the doctors that were involved?  Why was this decision being put to us, or, specifically, to my mom, as if it was a now-or-never proposal?  Why the hard-sell, all of a sudden?  The room was spinning.  I didn’t know the answer to those questions, but I didn’t know how else we were going to get Dad better.  All I could do was pace the floor, cry, and hope that signing off on this procedure would be the right choice for Dad.

Up Next … Part 40 – Supposed To Be Better