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.  

Cancer Sucks

Reports came out today about former TV star Valerie Harper having been diagnosed with terminal brain cancer.  

Harper, 73,  played Rhoda on the Mary Tyler Moore Show from 1970 until 1974, after which she had her own spin-off show called "Rhoda" until 1978.  She wrote a tell-all book called "I, Rhoda" that came out in January this year.

She went through treatment for lung cancer in 2009; her diagnosis at this time is Leptomeningeal Carcinomatosis, or LC, which occurs when cancer cells, usually as a relapse from cancer originally in another part of the body, invade the subarachnoid space, enter the cerebrospinal fluid, and are transported throughout the central nervous system.  LC occurs in up to 8% of patients with cancer, most often in cases of lung cancers, breast cancers, GI tract cancers, and melanomas.  

I didn't know all of that about LC until recently.  I follow a blog - Family Bonding Time - about a husband and wife who were both diagnosed with cancer almost simultaneously, and the wife, who has breast cancer, was diagnosed in January with LC as well.  

In reading about it, I was shocked to learn that LC can come from the spread of GBM, the type of primary brain cancer that my dad had.  We had been told by the team of oncologists and neuro-oncologists that GBM almost never spreads and that we shouldn't be concerned about that for Dad.  (Looking back, I wonder if the reason they said that is because they suspected that he wouldn't last long enough for any spreading to occur.) Apparently in cases of LC, often nothing new shows up on scans because the cancer has spread into the spinal fluid rather than through an increase in the number or tumors or in tumor size.  Symptoms of LC, of course, are very similar to those of other types of brain cancer, including GBM, but a couple of the markers for LC listed in the information I read caught my eye: extreme lethargy and severe pain reported diffusely in the top of the head, both of which cannot be explained otherwise, as in they do not seem to be coming from other sources like a side-effect of medication or the location of a tumor.  Both of these things were true for my dad, especially during the last month of his life, when he was so tired he could hardly keep his eyes open (but oddly and torturously for him he couldn't sleep because of the massive doses of steroids he was on - because he kept reporting severe pain on the top of his head!).

I guess it doesn't matter, does it?  I guess they could have done a spinal tap to check for the presence of cancer cells in the spinal fluid - and actually they did consider doing that to check for meningitis at one point, but then they decided just to treat him with antibiotics that would treat any type of infection instead.  If they had found LC, in theory they could possibly have treated it with chemo administered through a catheter into that part of his brain, but honestly I doubt he could have tolerated or withstood that treatment, and I guess I'm glad we didn't have to make the decision of whether or not to put him through such a drastic intervention when it was not very likely to buy him much more time, if any, in his condition.  I will never get over the fact, though, that no one on the team of specialists who were assigned to Dad's case towards the end, could even venture to guess why he was going downhill so rapidly, especially after he had been given transfusions and heavy doses of medications to restore his blood counts to within normal limits.  "On paper, he should be better," his oncologist said, but he wasn't, and I will never forget those words.  

Anger, Of Course!

Imagine, if you will, that you were just going about your business one day, living your life, and suddenly you became seriously ill or injured.  Now imagine that in the process you became disoriented and started having problems remembering recent events, and then you were told that you wouldn't be able to return to work or do the things in life that you loved doing, maybe for a short period of time, maybe forever.  In fact, you were told that you couldn't have your cell phone or your computer, you were confined to your hospital bed like a prisoner, AND you were in pain that never really let up at all.  

And then: you were told you had a terrible disease, one with a very grim prognosis.

Do you think you might just be more than a little angry in this scenario?

While my dad was sick - from the day he was first admitted to the hospital, through the time of the surgery and the not-so-great stay in rehab, and finally to the time of his hospitalization when he was so weak that he literally couldn't lift his head off the pillow - we only saw a few brief bursts of anger from him.  It's unbelievable, really, given all that was going on with him, the little time he spent expressing this emotion, probably about three hours' worth total over the course of the ten weeks.  

If you know anything about traumatic brain injuries and neuroanatomy, you know that based on the very area of Dad's brain where the tumor was and the multiple traumas that he suffered, coupled with the massive dose of steroids he was on and the utter lack of sleep he got during that time, plus (let's not forget to mention) the (can't think of how else to phrase this that will convey the same meaning) SHITTY HAND he had been dealt in being diagnosed with brain cancer, Anger should have been present every moment of every day for him.  I will venture to speculate, though, that several things played a part in the fact that it wasn't: first and foremost, Dad's perspective, the usual (pre-illness) evenness of his emotions, and his internal happiness meter, which was almost always in the good-to-great range.  Next on the list was probably the fact that during that time one or more close family member was always right with him, which, as comforting as I like the think that was for him, likely resulted in an extreme effort to be positive and to hold it together by HIM so that he wouldn't risk upsetting or disappointing us, in his eyes.  Another factor probably came from Grief; I think lots of time Grief gets a bad wrap, kind of like peer pressure does for kids in many cases.  Sometimes, though, also like peer pressure, Grief can be useful - and for Dad as it was for the rest of my family at the time, the Shock and the Denial it brought about allowed us to Hope and even just to function in what was an almost impossible situation.  For Dad, the understanding of the horror of what was going on that he was able to grasp was likely tempered by the Denial that covered both him and the rest of us. Finally, I think ironically it is possible that the brain injury itself, with the effect it had on his short-term memory, might have allowed Dad to be short-sighted enough regarding his limitations and most especially his prognosis that he was able to dodge much of the Anger that logically should have been there.

The few episodes of Anger that I saw from him during those weeks seemed to stem from frustration, usually aimed himself for not being about to do basic things as effortlessly as he should have been able to, very understandable given the circumstances.  A couple of times, I witnessed him getting angry with another family member, and a few times he snapped at me, mostly from impatience when he was in pain. All were, in the eyes of those of us who were taking care of him, completely justified, and, from my perspective, the only reason they are worth mentioning at all is because it's such a wonder they didn't happen much more often.

One of the biggest bouts of anger he had occurred during a P.T. session on one of the last days he was in rehab.  I had just gotten to the rehab hospital and was rounding the corner in the hallway on my way to the gym, and, when I heard Dad's voice, I stopped short of where he could see me so I could see how he was doing in therapy without distracting him.  As I peeked around the corner, I saw Dad lying on his back on the mat in the Therapy Room, and I heard the Physical Therapist telling him to do ten leg lifts with each leg.  Obviously just wanting to get the whole thing over with, he hurriedly and haphazardly lifted one of his legs a few times and then said he was ready to go back to his room. The P.T. brusquely told him that he wasn't done, to which he responded, "Oh, HELL YES I AM.  A couple of weeks ago, I could run a marathon and not even be tired; I don't want to work on stupid leg raises."  My aunt, who was sitting in on the session, tried to ply him first by playing on his competitive spirit ("Come on, Bill!  Show them what you're made of!" she cheered.) and then, when that didn't work, she tried joking with him ("And a one, and a two, fly like a butterfly, sting like a bee," she chanted, after she'd laid down beside him on the mat and as she enthusiastically did the leg lifts he was supposed to be doing.).  Neither tactic was effective; in fact, he was getting angrier by the minute, and he finally shut things down with a burst of expletives that I won't repeat here.  Suffice to say, he was angry, he'd had all he could take for the day, and he got his point across in the best way he knew how in that moment.

I'm sure it's difficult not to equate sickness and weakness with a feeling of failure.  I can't even start to imagine having to go from doing what Dad was doing to not being able to do what he couldn't, literally overnight.  Thinking about that while he was in the midst of the fight made me realize that beating cancer isn't just about getting rid of those cancer cells.  It's about fighting to stay on top of that win-lose mentality, it's about finding a way to accept just enough and to forge ahead in a quest for just enough, and it's about charging full-speed ahead while somehow at the same time finding a way to stop and smell the roses and to create and hoard those memories along the way.  

From my family's experience when Dad was sick, I became acquainted with the harsh reality of how tough cancer treatment can be on one's body and, just as importantly, on one's spirit.  The very process of having to make what ends up being literally life-or-death decisions based on the Cliff-note version of information given while dealing with the illness,  the loss, and the reality of things is exhausting, to put it mildly.  It feels like it must feel to stand at the bottom of Mt. Everest without any experience and without a trustworthy guide or a map of any sort.

On the day that Dad went to the radiation oncologist for the second time, I had to work and so I didn't go with Mom to take him that day, which ended up being the day that he had to have the face mask made to hold his head in place for the radiation treatments that we thought were coming up.  Afterwards, when I asked him how it went, he told me it was no big deal.  I've since learned, though, that getting the mask made is not no big deal (To read a first-hand account of the process, click  HERE), and I cannot imagine how scary and confusing it must have been for him.  

And that, along with many other things that happened along the way while my dad was sick, makes me feel the burn of the anger that I don't think will ever fade.  

"I know I can't be with you; I do what I have to do.  I have the sense to recognize that I don't know how to let you go."

Part 38 – A Blue Christmas

Continued from Part 37

On the afternoon of Christmas Day, a parade of specialists came to see Dad in the ICU.  Dad continued to be somewhat confused with bouts of head, stomach, chest, and/or throat pain and still with no appetite, although he ate some yogurt, a popsicle, and some ice cream with encouragement from us over the course of the day. 

All of the consulting doctors that day were new to our case, and we asked each of them to give us their opinion about what was causing Dad to be so sick and their thoughts about what should be done to help him.  When the neurologist came in, he asked Dad the standard orientation Questions, and Dad seemed fairly clear except for the fact that he thought he was 41 years old.  The doctor gently pointed out his actual age to him and then said that confusion as well as lethargy and weakness can stem from a severe blood infection like Dad had been fighting and also from wildly fluctuating blood sugar levels, which had been also been going on with Dad.  Dad listened earnestly and then asked, “Do you think I’m going to die soon?”  

I felt my breath catch in my throat.  “No,” the doctor responded evenly.  “In fact, as far as I know, all of the doctors here think you are going to get better.”  

“I thought I remembered that someone told me this morning that I am dying,” Dad said.

The doctor looked him straight in the eye and said, “I think your memory isn’t all together accurate right now.  Just a minute ago when I asked you how old you are, you said 41, and that’s not right, is it?”

“No, I guess it’s not,” Dad said.  

“I think some of that confusion is what’s making you wonder about dying, too,” the neurologist told him gently.  I watched Dad’s face, and I saw him trying to accept that news, trying to believe what he was being told, trying to swallow that pill, trying to get past his fear.  I could tell by the look on his face that he was only partially convinced, and I so wanted him to see that he needed to trust us when we told him that he was going to get better.  

The doctor reinforced to Dad that nutrition was very important and that he needed to eat in order to get better.  Dad agreed and said that he would try harder to eat even though he was “zero hungry.”  

Also in the lineup that afternoon were a neurosurgeon, who told us that based on the MRI and CT scan on file he agreed that the tumor seemed “stable,” and a cardiologist, who noticed on the latest lab report that Dad’s ammonia level was abnormally elevated, which can cause confusion, loss of appetite, stomach pain, and weakness.  [Side note: I later learned that an elevated level of ammonia in the blood can be a sign of kidney/liver failure, and I wonder now if this was the first sign that Dad’s body was starting to shut down.]  The neurosurgeon said that he was concerned about the high dose steroids that Dad was taking, and he made a slight adjustment to the dosage in hopes that it would help improve Dad’s condition.  Because we were watching over Dad like hawks and because we were searching so frantically for an answer, we asked the cardiologist about something that we had seen come up on the monitor readings over the past 24 hours for the first time: PVC’s, or premature ventricular contractions, otherwise known as an irregular heartbeat.  A PVC can occur for many different reasons, ranging from the onset of a heart attack to things like a side-effect of certain medications or from stress and exhaustion.  This reading explained the chest pain that Dad had reported (and that hadn’t really been addressed by the medical team) since he had been admitted to the ICU, and we were concerned that it signified a problem with Dad’s heart.  The cardiologist said that he felt it was related to anxiety and possibly to nutrition/hydration issues but that he would investigate it further should the pattern continue.

Evidence of a PVC on the heart rate monitor

Back at my parents’ house, we had the minimum of tradition covered for Christmas.  We took shifts spending time with the kids, each of whom also took a turn sitting with their Gramps in the room in the ICU that day.  We ate in the hospital cafeteria during the limited “special holiday hours” it was open that day (hours that are not so special to family members of patients who are sick enough to be in the hospital on a holiday); we were so sad and so worried, but, as we had been, we were together in our effort to help and protect Dad.

Dad, of course, continued to be friendly and polite to everyone with whom he came into contact.  In between visits from the doctors, Dad chatted briefly with the nurses and aides.  Even when he was in pain, he doled out thank-you’s and was obviously trying to keep what he considered to be complaints to a minimum.  At one point, he saw a woman mopping the floor just outside the room next to his on the unit.  He strained to move his arm from underneath the covers and then waved at her.  She was busy working and didn’t see him, and so he waved several more times.  Finally, he turned to my sister and me and said, “Why isn’t Kathy waving back?”  My sister and I exchanged a look and then asked him for clarification.  His explanation clued us in to the fact that he thought it was my sister’s mother-in-law and that he couldn’t understand why she didn’t stop mopping long enough to wave back.  He seemed convinced, even though the cleaning lady looked nothing at all like Kathy.  We decided to let him have this one and told him that she was probably just really busy, which he accepted, thankfully since we knew he was exhausting himself with all of the waving.

Dad continued to ask for reassurance that he wasn’t dead; he seemed to be trying to “catch” each one of us alone to ask us again, just to make sure we were all SURE.  And even then, even after being told by each of us whom he trusted so much and by all of the medical staff whom he respected, I could see the doubt in his eyes and hear the uncertainty in his voice.  It wasn’t like he thought we were lying to him; it was as if he was convinced that we didn’t really have all of the information, that we weren’t clear on all of the facts, and that we just didn’t know what we were talking about.  We had several surreal conversations and exchanges with him about being alive vs. being dead; a few times Dad asked, “How will I know that I’m dead?”  Finally, I pointed out the pulse oximeter that was affixed to his index finger and told him that the little red light on the device was proof that he was alive.  I wasn’t sure he would buy it, but evidently he did because from then on he kept a close watch on the light on his finger.

But still, Dad wasn’t done with that conversation.  Death and dying were very much on his mind; it was like he couldn’t shake the thought or the feeling, much like his body couldn’t shake whatever was going wrong with it.  Late on Christmas night, my husband, my mom, and I were standing guard over Dad in his tiny, freezing cold room in the ICU.  The three of us had our masks and gloves on to protect Dad and our winter coats and hats on to keep us a little warmer. Dad’s hospital bed was in the middle of the little room, pointing towards the nurses’ station and facing the sliding glass doors.  Behind him was a window that overlooked the hospital grounds.  I looked out the window and saw snow coming down hard; it was a white Christmas indeed.  A wave of despair hit me; I was so sad that Dad couldn’t see the big, beautiful snowflakes that were falling just outside his window.  For a second, I considered trying to turn his bed around so that he could see it, but then I realized that he was so sick and so miserable that he just couldn’t even care about anything else.  Like us, Dad didn’t need Christmas presents or money or material things at all; he just needed his family and their love.  My eyes went from Dad’s face to the window and back, and then Dad said, “What’s it like to die?”

Somehow the room got even quieter than it had been a second before.  As we had all been doing since Dad had gotten sick, Mom started to respond to Dad by reassuring him that he wasn’t going to die, but, for some reason, I felt an urgency to address his question directly.  Trying to piece words together in the best way that I could, with a shaky voice I said, “I think you just stop breathing, and then you don’t hurt at all anymore.  You won’t be cold, and you won’t have anything to worry about; you’ll just be at peace.”  I was hoping to target the things he seemed to be most afraid of; I was hoping to comfort him even though I really had no knowledge or basis with which to do so.  I wish I’d been more prepared; I wish I’d been more eloquent.  It’s one of those times in life that you can’t rewrite the scene, you can’t take back or add words, you can’t do it over. I just had to hope that it was enough to give Dad the peace he seemed to be so desperately seeking.

Coming Soon ... Part 39 - The New Deal

Part 37 - The Fight

Continued from Part 36

While Dad was having the emergency CT scan, the ICU nurse told my mom, my sisters, and me that we would have to observe Neutropenic Precautions, meaning we had to scrub, gown, and mask to enter Dad’s room.  OK, I thought, we can do that.  And then she dropped the bomb: she pointed to a sign on the wall that listed visiting hours in the ICU and the one-visitor-at-a-time rule.  Feeling panic rise up in my throat, I told her that Dad was unable even to use the call button to ask for help and that, unlike other patients, he rarely slept.  I told her that he didn't just want us to be there with him, he needed us there, and we needed to be there.  She said the only time they will make exceptions to the rules is when a doctor had written orders to that effect.  After a little more pleading by us, she called and made our case to the stand-in oncologist Dr. M, who agreed to write an order to allow us to stay with Dad around the clock, with up to two of us in the room at a time.

When they brought Dad back from CT, the nurse said he was not allowed to eat or drink anything, but she could not give us a reason.  My sister eventually argued her down on the issue, but in the meantime Dad was cold, thirsty, anxious, and exhausted.  A little while later, Dad started to complain of severe stomach and chest pain, and testing for heart-related problems was kicked into high gear.  WHAT IS GOING ON? we wondered, but we tried our best to keep the fear from our faces as we assured Dad that the doctor was going to figure out what to do to make him feel better soon.  After some additional blood work, Dad was given IV pain medicine, which knocked him out for a couple of hours, during which time my mom, my sisters, and I huddled to revise the schedule so that each of us could be there for as much time as possible around the clock, with at least two of us there at all times.  We were launching into survival mode, for Dad and in some ways for ourselves as well.  

The unit was freezing cold, and when we asked if the temperature in at least our room could be adjusted we were told no.  We kept Dad bundled with extra blankets, and we kept our coats on, at times even wearing gloves and hats in the room too.

To add to our problems and concerns, snow was really coming down outside, and the prediction was for snow and ice to accumulate even more overnight.  Our husbands and children were traveling from out of town, and we were all driving between the hospital and my parents’ house in shifts, at all hours of the day and night.  In addition, we had been so involved with all that was going on at the hospital that none of us had had a chance to get to a grocery store to buy food to have, and, now that night had fallen on Christmas Eve, stores and restaurants were all closed until the day after Christmas.  We were so consumed with the precariousness of the balance of caring for Dad and taking care of everything else that had to be done that we were overwhelmed by logistics, and the icy roads and that lack of sleep and stress that we were all experiencing weren’t helping any.  We ate dinner that night out of the vending machine in the ICU waiting room, taking turns eating and sitting with Dad, so full of worry and sadness that we didn't even acknowledge the crappiness of our Christmas Eve meal.

At the nursing shift change on Christmas Eve, Dad’s new nurse came into his room and introduced herself.  Her name was an unusual one, and, because she thought Dad was asleep, she spoke to us very quietly.  A few minutes after she left the room, Dad opened his eyes and said, “Did she just say her name is Worm?”  We told him no and commented that that would be a really strange thing for someone to have as a name.  Dad, as usual, had a different perspective, and he scolded us by saying, “She can’t help what her parents happened to name her if her name is Worm, and she seems nice.”  Point taken.

Like all of the nurses we encountered on the ICU that weekend, “Worm” was mostly nice and usually efficient but very business-like and not what you would call "warm." At times, it seemed like the nurses on the unit wished that Dad would just go to sleep and that those of us who were extras on the set would exit, stage left.  Like we had the first time Dad was in the ICU around the time of his surgery, we tried to fly low and make nice with the nursing staff, but we weren’t about to have Dad take a hit just for the sake of niceness.  Several times, we had to remind the nursing staff about certain medications that Dad was supposed to be getting on a specific schedule, including the fourth in a series of five shots of the Neupogen that was ordered to be boost his immune system.  Because the temperature in the room was so cold, we had to ask for extra blankets fairly often.  We were the only family members on the unit the majority of the time, and, time and time again, we commented amongst ourselves that if family members weren’t allowed to be there as much as we were with a patient like Dad, in the best case scenario, that person would be neglected at times, and, in the worst case scenario, the patient would be, well, a lot worse off. 

Dad was very uncomfortable and anxious and at least somewhat disoriented during this time.  As had been going on throughout his hospitalization, it seemed like every half hour or so a nurse or technician had to poke or prod him or – the worst for him – tear off a heart monitor lead, medical tape, or a band-aid.  Even just having someone move him to reposition him in the bed, to put a bedpan under him, or to put a thermometer underneath his arm was extremely painful for Dad, and having hair ripped off along with the adhesive was like medieval torture.  He started cringing and even startling whenever someone entered the room in anticipation of the pain any procedure or action might bring.  His stomach continued to hurt, and an anti-ulcer medication was added to the list of things being administered.   And, although we had been told not to adjust Dad’s diet with regard to the blood sugar issue many times by many physicians since Dad had been started on the mega-doses of steroids, suddenly the hospital starting sending diabetic trays for him, some of which were “liquid only.”  Dad was totally disinterested in food of any kind; we fed him ice chips to keep his throat, mouth, and lips moist.  As the hours ticked by into the wee hours of the night, Dad’s frustration and anxiety levels grew; he was very annoyed if anyone made noise or talked around him, and so we started texting each other from one side of his bed to the other to communicate when necessary in the dark, cold room. 

Christmas morning arrived with Dad in exactly the same state as the previous day, if not somewhat worse with regard to pain and despair.  The Infectious Disease doctor came by to report that Dad’s blood work looked “normal” and that she wasn’t sure why his mental status and pain levels weren’t improving.  She wrote an order to discontinue the Fentanyl patch that Dad had for pain in hopes that his confusion would clear up.  Dad alternated between being discouraged and annoyed and kept saying things like, “Why can’t these people just go on?” and “I can’t do anything – I can’t even breathe right!”  It was heartbreaking; it made us want to protect and help him even more, but we had no idea how to do that.

Around noon that day, Dad reported that his stomach, chest, and whole body hurt really badly.  “I’m really worried that I’m not going to make it!" he said.  We hit the call light button, and the nurse came in and gave him pain medicine, after which he didn’t sleep but he told us his pain wasn’t as bad. 

A few minutes later, Dr. M came into the room.  “I’ve got no news for you,” he said right off the bat.  “I’m recommending a feeding tube for nutrition for him.  It’s my guess that he’s got something else going on in the head,” and then he pointed at his own head, as if to emphasize or to clarify his point.  

Wait a damn minute, I thought.  This isn’t some breezy interaction in an elevator!  And HOW DARE you speak about a patient – MY DAD – like he isn’t RIGHT THERE or like he DOESN’T UNDERSTAND what you’re saying about him.  By the time I had processed this, though, the guy had turned on his heel and stepped out of the room.  I looked at my mom and said, “I’ll be right back.”

What happened next is one of my clearest memories from the whole time we were in the hospital, maybe even from the whole time Dad was sick, and MAYBE EVEN from over the course of my whole life.  

Dr. M was at the nurses' station, writing in Dad’s chart. “I need to talk to you about my father,” I told him, using every bit of restraint I could muster.  

“Oh?” he said, looking up from the chart.

“We need some answers and we need some kind of action, some sort of plan. Why is he not getting better, and what do you intend to do to help him?” 

“Look,” he replied, “It’s Christmas Day.”  AS IF THAT WAS NEWS TO ME, AS IF THAT EXPLAINED ANYTHING, AS IF THAT MADE A DIFFERENCE TO MY DAD OR TO MY FAMILY.  I came unglued.

“We are aware of that,” I told him, with tears of fury in my eyes, “but it’s not Christmas to my dad, or to us!  He is miserable, scared, and so sick.  I don’t care what day it is – DO SOMETHING!  It’s YOUR responsibility to do something about it and to take care of him, regardless of what day it is.”  

“I understand,” he said, in what could only have been seen as a very condescending tone.  

“No, you don’t!” I yelled.  “You can’t understand – it’s not your dad in there suffering while no one does anything to help him!”

“Ma’am, I do understand,” he said, “because I have been through cancer myself.  I had prostate cancer several years ago.”  

AS IF, I thought!  “My dad has brain cancer!” I screamed.

He took a step back, and for a moment the unit was completely silent.  I could hear the clock on the wall ticking, and I could feel the eyes of every person in the area on me, but of course I didn’t care.  “I am aware of his diagnosis, Ma’am,” he said, “but I’m not sure you understand the prognosis.”  

“I am very well aware of the prognosis and the facts,” I yelled as I clenched and unclenched my fists.  “What I don’t understand is why you think it’s ok to dismiss him as if there’s no hope, as if he doesn’t matter.”

After several beats of silence, he came back with “Ma'am, he is receiving adequate care.  I know how you feel, but sometimes patients just don’t get better.”  

Oh, no, he didn’t. Quietly, but with great conviction, I told that @&$#% that “adequate care” was not good enough for my dad, that this was not the end of the road for him, that my dad was not going out this way, and that it was his responsibility as a doctor and as a human being to DO SOMETHING to help him.

  

“What exactly do you want me to do?” he asked me.

What I wanted to do was to punch him in the face, but instead I told him, “I want you to figure out what’s going on with my dad.  I want second opinions and consults from every specialty area – cardiology, neurology, neurosurgery, and anybody else that you can think of.  TODAY.”

“It might be hard to get anybody to come in to consult on Christmas Day,” he said, still full of shit waffling.

“Are you saying that there is no one at all in these areas on call today on staff at this hospital?” I demanded.

Finally out of arguments, he acquiesced: he didn’t answer, but he averted his eyes and furiously started scribbling orders in the chart.

I knew I had offended him, and I am well aware of the Be-nice-to-the-waiter-so-he-doesn’t-spit-in-your-drink Rule, but this was literally a matter of life and death.  Christmas or not, my dad, like every patient, deserved the best care available, and I was convinced there were other things that could be done to help him.  Completely entrenched in my role of Daughtering, I was taking no prisoners, and one arrogant doctor was no match for me.  Tool.  With that Smackdown out of the way, things started to move along a little more smoothly during the second half of our tumultuous Christmas Day.

Up Next in Our Story ... Part 38 - A Blue Christmas

Part 25 - Round 2

Continued from Part 24

As indicated on the Dry Erase Board, I arrived at my parents’ house in time to accompany them to get Dad’s second round of chemo/Avastin.  I had called the oncologist’s office a few days before to request a consultation with a registered dietician with experience with cancer patients since Dad’s appetite had diminished to almost nothing, and so that was the first order of business on the day of Chemo: Round 2.  The nutritionist met us in the waiting room of the oncologist’s office, which I guess was nice because it was productive use of our time as we waited to see the doctor, but I kept hearing the sound of screeching tires in my head as every rule of confidentiality ever established in the field of medicine was broken by this open-air approach.  Dad didn’t care/didn’t notice, but Mom and I did, and we were torn between being grateful for the complimentary consultation and horrified at the dietician's lack of awareness of and regard to Dad’s right to privacy.

At one point in the conversation, she asked Dad if he was “regular.”  Unclear about her role even after an introduction and despite her name tag, Dad misinterpreted what she meant and said, “Sure!  I’m just a regular guy, nobody special.”  Mom and I exchanged a look and waited for Ms. Dietician to figure a way out of that one.  Perhaps thinking that he was kidding, she laughed and then said, “But really, how often are you able to go to the bathroom?”  Again, Dad missed the mark, and he said, “Oh I don’t know, they let me go whenever I need to, probably ten times a day or so, depending on how much Diet Coke and beer they let me drink.”  Ms. D started to tune in to the program at that point, I think, and finally she got more specific:  “How often do you have a bowel movement?”  Without missing a beat, Dad said, “Not nearly enough!  When I was running, I always went once a day, but that’s just one of those things that doesn’t come easy to me anymore.”  He didn’t realize the opaqueness of his statement, but luckily Ms. D picked up what he was putting down, and the conversation could (finally) move on.  

So, with that as the conversation opener, we got to discuss pooping right there in the waiting room.  Mom and I recapped the scene later when Dad wasn’t listening and agreed that – pun definitely intended here because sometimes you’ve just got to laugh – Dad didn’t give a shit that we were talking in a very crowded room about something that most people would consider very personal.  Ms. D proceeded to discuss the importance of getting plenty of fiber and “healthy fluids” (“I don’t guess that includes Diet Coke and beer,” Dad grumbled).  The specifics of the type of intake was much less concerning to me at that point than the amount, or lack thereof, was.  I had counted calories for Dad and let Ms. D know that he was consuming less than 500 per day.  

With that, she ushered us into the inner office, where more patients were waiting, lining the walls in chairs and wheelchairs, waiting to be seen in the lab, and instructed Dad to get up on the scale.  Unlike the scale at Duke, this one had grab bars on either side of it, but it still required stepping up on a platform, which Dad needed help with.  He was able to balance for a split second without holding onto the rails or to me, though (Microscopic Improvement??, I wondered), and Ms. D reported that he'd had a weight-loss of seven pounds since leaving rehab, fairly dramatic in an already-thin (Dad preferred to be described as “in shape” rather than thin) person.

With no treatment room open, she loaded us up right there in the hallway with free samples of calorie boosters - Ensure Plus and Boost Plus, which she said tasted like a milkshake, and Benecalorie, a flavorless caloric-dense supplement that could be added in to any soft food.  She also recommended that he switch to whole milk and whole milk products (yogurt, cheeses, etc.), to which Dad gave Mom and me a not-so-subtle eye roll.  (All my life I remember him saying that cheese makes people fat, and evidently he had not forgotten about and did not plan to change his stance on that.)  We heard Dad’s name being called to get him into the lab, and so we thanked Ms. D (“She was so nice!” Dad commented loudly as we pushed his wheelchair down the hallway) and forged ahead.  

Lab Tech took blood from Dad’s left arm, which he didn’t feel at all due to the continued sensation problems.  I thought she had thought the process through and figured it was kinder to stick the numb arm, especially since it took her a few tries to get the needle into his tricky steroid-abused vessel, but then I saw her hand the glass vile of blood to Dad in his left hand for him to hold while she turned to fill out his paperwork.  Dad could move his left arm and leg; he just couldn’t feel them, plus his attention span was, well, not great, and so within 30 seconds he started to relax his hand and I had to dive to catch the vile before it hit the ground.  “Uh-oh!  That was close!” Lab Tech said when she realized what had happened.  Hopefully she won’t make that mistake again.  

Next Dad had to give a urine sample, which was a challenge for the above mentioned reasons as well as the fact that he almost never remembered to lock the brakes on the wheels of his wheelchair, and so he needed verbal prompts through the bathroom door for safety so that he didn’t fall.  I got lots of odd looks from those in the area as I shouted through the closed bathroom door in the hallway, but Dad got the job done and delivered the goods with his right hand.  We moved into the exam room, where luckily we didn’t wait long before the oncologist’s handy-dandy nurse practitioner came in.  The oncologist himself was out of town at a conference that day (hopefully, I thought, learning all about treating GBM!).  

“The blood work looks good, weight is down but I understand you’ve meet with the dietician so let’s don’t worry about that for now,” NP said quickly.  “Any questions?”  Ummm, have we met?  

I had TONS of questions, starting with WHY THE HELL IS THIS HAPPENING and more recently WHY HAVEN’T WE SEEN ANY OF THAT MAGIC WE WERE PROMISED YET?  But I stayed focused on the list in the Notebook, the things that were most urgent and the quickest fixes, like again requesting an appointment with a neuropsychologist (“The only one we have is out through mid-January, but I’ll have the receptionist set you up for something then!”) and reminding her about the need for all lab reports to be faxed to Duke per the instructions of the protocol.  (“Will do!”)  I asked for refills on a couple of prescriptions and then worked my way to the steroid issue:  when could we start to decrease the steroids like the neuro-oncologists at Duke had recommended?  (“Because he’s still having those headaches, let me consult with our on-site oncologist and let you know while he’s getting the chemo.”)  Well, ok, then, let’s get the show on the road!

Onward to the chemo room.  Since Dad had gotten his first round of chemo/Avastin at Duke, it was our first time in this Chemo Suite, as it was ineptly called.  As soon as we walked in, I could tell the vibe was totally different here than at Duke.  The room was very crowded; in fact, Mom, Dad, and I had to stand huddled in a corner for about ten minutes just waiting on a chair to open up for him.  It was really noisy, which Dad hated, and there were no curtains or other dividers between the mauve chemo chairs at all, which I hated right away and knew that Dad would hate after a short while in that frenetic room.  In this not-so-sweet “suite,” the unsightly chairs were set up around a disorganized-looking circular-shaped nurses’ station in the center, like chairs around a campfire except nobody was singing or roasting marshmallows here.  In fact, everybody looked pretty miserable.

We took Dad over to his assigned chair and got him settled in.  There was a tiny “support person” chair to one side, so Mom sat there while I stood behind Dad’s recliner.  Thirty minutes later, we were still waiting, and so I got the attention of one of the rapidly-moving nurses and asked what the deal was.  “We’re still waiting on the doctor to order the meds for him,” she said.  Um, WHAT?  “He can’t order anything until after he’s seen the patient first.”  Well, assuming the Nurse Practitioner was the stand-in for the oncologist, Dad had already been seen, I told her.  We volleyed back and forth on this issue and she was very nice, but she had to make several phone calls and then type everything into her computer at the nurses’ station before the IV bags could be brought over, which took another 45 minutes, during which time Dad was getting restless.  Finally, the IV drip was started and Round 2 was on.  

Because we were so delayed in getting the chemo started, though, we were unsure if Mom would make it on time to a late afternoon appointment that she had.  I looked at Dad, who looked pretty relaxed by that time, and the single chair in the small space beside him, and I told Mom that I thought she should call my aunt for a ride home to get her car so that she could go to her appointment while Dad and I finished up.  Not only did there not seem to be a reason for both of us to stay while we waited for the drip to finish, but the logistics in the cramped Chemo Suite made it almost impossible for a patient to have more than one person waiting with him.

After Mom left, I got out my new iPad so I could show it to Dad for entertainment/distraction while we waited.  He had a hard time paying attention due to the high level of activity that was going on in the room - the alarms on the IV’s, the talking, the TV’s, the overhead announcements, and to top it off the Christmas muzak that was playing in the background.  I put the iPad away and tried to talk to him in a soothing voice about visualization of cancer cells being destroyed.  He wasn’t much buying that either.  A short while later, he announced that he had to go to the bathroom, and so I hustled him into his wheelchair, and a nurse pushed his IV pole along behind us to the private-stall restroom around the corner.  I got the wheels on the wheelchair locked and the IV pole situated so that it was out of his way and then stepped out of the bathroom to give him some privacy.  The nurse and I stood outside the door waiting.  Dad kept yelling to us that he was ok (“and don’t come it!” he said over and over), until finally I heard the clank of metal against metal and knew it was time to check things out.  He was perched awkwardly in the wheelchair and was trying to adjust the footrests but had the IV line completely wrapped around both of his legs.  By the time we got him untangled, Dad was frustrated, embarrassed, and very distressed.  Another patient was waiting to use the bathroom, and so the nurse and I got Dad out of there and started moving him and the IV pole back towards the Chemo Suite.  Right when we got him back into the mauve chair, he fell apart.  “This is taking too long!” he said.  “I was supposed to be out of here hours ago!  I am one of the ones in charge of a company, and I’ve got to get back this afternoon in time to do some work!”

All of that was true, except for the part about his needing to get back to work; that of course had not been on the schedule for the day.  He started reaching towards the tape that was securing the IV in his arm like he was going to rip out the line.  I didn’t know what to do, but I did know that we had to somehow get him calmed down so we could finish up and get the hell out of there.  The nurse was trying her best to help us; at one point she suggested that he try to watch TV, but when she used the remote control by his chair to change the channel, the TV went to a Spanish-speaking station, which made Dad even angrier and more upset.  He was just completely overwhelmed.   With the help of some warm blankets, the nurse and I finally got him calmed down, and thankfully a short time later the infusion was finished.  

We made it out to the car and loaded up for the ride home.  We had gotten there in the morning and hadn’t expected to be there for more than a few hours, and so Dad had not eaten since breakfast that day except for some snack foods they had in the Chemo Suite.   I wanted to get him home and then try to figure out supper, but, as I drove down the interstate in the dark towards my parents’ house, he insisted that we stop and pick up Chinese food on the way home.  “I know just the place!” he said, and I was so glad that he seemed to be getting past the day’s troubles.  

He told me which exit of the interstate to take and directed me through several turns, throwing out comments like “You’re going to love this place!” and “Your mom and I go here pretty often!” along the way.  After this went on for awhile, I realized that not only did I not know where we were going or exactly where we were, but neither did he.  He gradually started to realize the same thing, but he wasn’t one to throw in the towel that easily, and so he gave me more directives and kept saying “It’s probably just right around the corner” until we’d been around and around in circles for more than half an hour.  The biggest obstacle was that he couldn’t remember the name of the place, and yet he could not be dissuaded from wanting to go to this particular place.  “They know me there!” he insisted.  I didn’t want to tell him the jig was up; I didn’t want to underscore anymore than our day already had how different Dad’s life had become, and I knew he was hungry and tired and just wanted to end a shitty day on a good note.  I tried calling my mom and both of my aunts but didn’t get an answer from any of them; actually I’m not sure what anyone except possibly my mom could have done because Dad didn’t know the name of where we were trying to go.

Finally, feeling like I was completely letting him down, I told Dad we should just turn around and go back to the interstate.  I pulled into the parking lot of a shopping center AND THERE IT WAS!  Dad was so excited that he literally almost jumped out of the car.  “I told you!” he said when we saw the bright lights of the restaurant, and I left it at that.  We got the food to go and headed home to meet Mom and eat our well-deserved dinner.

Coming Soon ... Part 26 - Oh, $*#^&!

Part 24 - Things That Go “Hello?” In The Night

Continued from Part 23

Dad, with a few of his favorite things - Foster, the newspaper, and a Sonic Diet Coke - December 2010

As we began what would become a very difficult, yet not-long-enough, December, my family prepared to batten down the hatches while we continued to wait for a sign of improvement in Dad’s condition.  Because of Dad’s continuing severe headaches, the local oncologist had said that he wanted to wait until after the second round of chemo and Avastin to begin tapering the steroids, which unfortunately meant a continuation of the sleepless nights and the other side effects like massive heartburn, sugar cravings, and brittle, rolling veins which were an issue whenever blood was taken.  Whatever it takes, though, we thought, and we pressed forward. 

Dad’s memory and reasoning continued to be affected, although what he would “get” and what he wouldn’t were sometimes difficult to predict.  We bought a dry-erase board and wrote notes and the daily schedule on it; like a shadow, it moved with him to wherever he was in the house in an attempt to help orient him and to decrease his anxiety and confusion.  Its usefulness was limited, though - sometimes he didn’t realize that he had forgotten something or that he wasn’t aware of something that he needed to know and so he didn’t think he needed to check the board, and other times he knew he wasn’t thinking clearly but he forgot to refer to the board for support.  Ironically much like the training plans Dad had always written out for himself as he was in training for one race or another before he'd gotten sick were the words the were always written at the bottom of the board: “Recovery Plan: eat, sleep, and exercise well everyday.”  The sleeping was pretty much out of Dad’s (and our) control, but we wanted him to give it his all to try to eat healthy (instead of the junk food the steroids were making him crave, and later instead of not eating much at all) and to exercise, a very strange set of reminders for he who had worked to do both every day of his life.  (Side note: also ironically and sadly, none of those of us caring for Dad were following those three rules at the time either, because we were so consumed with trying to meet his needs!)

Oddly because Dad had always been such a "morning person" and so motivated to "get up and go," each day typically began with the necessary prompts and encouragement for Dad to get out of bed mid-morning, which seemed to be the only time he did actually sleep well – and that was because most often he had to be given a pain pill in the middle of the night which took awhile to kick in.  Home health therapists came in and out of the house throughout the day; it was of great frustration that they did not seem to coordinate with each other at all and that they appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them.  As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a patient who'd had a stroke, and those two things are vastly different.


One day the PT came at 8 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days.  The next day, the therapies were at 9:30, 1:00, and 4:00.  There were lots of last-minute schedule adjustments and some cancellations by the therapists, too.  The only consistency from the home health agency was the inconsistency.  Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before.  He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion. 

The nighttime routine went like this: around 8 p.m., Dad started to comment about being ready for bed from his position in the recliner; every day was a very hard day for him, plus he really couldn’t sustain his attention long enough to watch TV or read and so he was, in short, bored and frustrated.  On the nights when we would help him to bed that early, he tended to fall asleep for an hour or two and then be up for the night, often with a severe headache and sometimes with awful heartburn too.  Most nights, we would try to keep him up longer and attempt to get him to eat a healthy snack so that he could have something in his stomach and stay up until at least 10:00 p.m., at which time he would make it to the bed, where he would put on his reading glasses, prop up in the bed with pillows, and try in vain to read.  He seemed to alternate between a Lance Armstrong book, the December issue of Triathlete magazine (“I doubt it’s going to be my ‘best season ever,’” he said every time he looked at the cover of that edition), and a binder of info on brain cancer that I had put together for him, complete with highlighted sections about nutrition and exercise and articles about how effective Avastin was in treating GBM. 

When the 20 minute-long period of reading/re-reading concluded, Dad started demanding that Mom go to bed, too.  When she did, he was typically super-chatty for a couple of hours, and then he always asked The Nighttime Question:  “We’re going to beat this thing, right?” 

As unaware (and therefore unconcerned) as Dad usually seemed about the gravity of his condition (a good thing in our eyes at the time, although looking back I see that it should have been more concerning than comforting to us), he did seem to know on some level what was going on with his health.  Obviously, things weren't great – he had gone from being able to bike 100 miles over rolling hills as part of a moderately easy workout day to not being able to ride more than 10 minutes on a recumbent bicycle in his dining room, not to mention the whole can't work/can't drive thing.   Of course, Mom always responded to The Nighttime Question with a resounding, very confident, “YES!” and then crossed her fingers that he would be able to relax enough to sleep some over the next few hours, which he most often did not.

On the nights that one of my sisters or I slept on the couch in the next room for back-up support, almost every time, there was a need for a tag-team effort around 2:00-3:00 a.m., at which time Mom went to the couch or the guest room to get a few hours of sleep and the back-up person joined Dad for the late night shift.  Anxiety was a challenging bedfellow, and, when coupled with a bad headache or that stupid heartburn, Dad was up for the count.  If Mom or one of us dozed for a few minutes or even just stopped talking for a brief period of time in effort to get Dad to settle down so that he could sleep, he often called out into the dark, “Hello??  Is anybody even here?”  Nope, there wasn’t much sleeping going on for any of us. 


Some of the late-night conversations were, perhaps oddly, enjoyable.  Others were about dreams and thoughts that Dad had, most of which were on the darker side.  Many were just discussions about memories of the past, intertwined with fear and worry in the present and hope (desperation) for the future.  Dad was the most optimistic person I had ever known, and it was one of my main goals at the time to foster that in him, to protect him from knowing all of the cold, hard, ugly, sucky truth.  I believed in the power of belief, and of that we had just enough to get us through the day (and the night).

Something that started while Dad was in rehab and continued to increase in the month of December was Dad’s frustration level that resulted in intermittent flashes of anger.  He was the most easy-going person I knew, pre-cancer, but the combination of sleeplessness, anxiety, headaches, indignity from the lack of independence and privacy, and – last but not least – the rage that is normally seen after a frontal-lobe brain injury, not to mention the emotions seen in people on high-dose steroids as he was, were a tough combination to overcome.  Depression and Anger were not welcomed guests; they invited themselves over just as the cancer had, and all we could do was try to explain things to Dad and to ourselves and to hold onto every ounce of compassion, understanding, patience, and love for this man that was our hero.  He wanted his life back – hell, he just wanted to have some privacy and to be able to sleep.  We wanted that, too, and so much more for him.

Coming Soon ... Part 25 - Round 2!