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.  

No Answers - Part 2: Informed Consent

Continued from No Answers - Part 1: The Oncologist

Besides the unresolved issues on my mind from when my dad
was sick that relate to the oncologist on Dad's case, another
thing that concerns me is the way that informed consent was 
handled when Dad was in the hospital.

Informed consent is the process by which a fully informed patient participates in making decisions about his own health care. It originates from the legal and ethical right the patient has to direct what happens to his body and from the ethical duty of the physician to involve the patient in the management of the patient's own health care through educating him about his condition and any proposed treatments as well as reasonable alternatives and the reasoning behind the physician's recommendation.  It also includes informing the patient of the risks and benefits of the suggested course of action and any other possible decisions after which the patient can use that information to either accept or decline the treatment.  

In cases when the patient is deemed unable to participate in this process, another person can be appointed to serve as proxy through a medical power of attorney or other legal process.  

When it became clear that my dad was not consistently oriented (i.e. he was confused about certain things) upon hospital admission, informed consent fell to my mom on his behalf.  According to the definition of informed consent, this meant that she was to be educated about Dad's condition and of the options for treatment and the advantages and disadvantages of each.  This is basic Medical Ethics 101, a process of which any physician - and certainly any surgeon - should be extremely aware.

This is where my question comes in:  Why was that process not followed?  

At admission, a neurosurgeon was assigned to my dad's case, and right away he started saying that a specific type of surgery called "debulking" needed to occur just as soon as Dad was stabilized seizure-wise.  We were never given any choice of neurosurgeon, and no alternatives to this procedure were ever presented to us.

Prior to the surgery, my mom, serving as Dad's medical power of attorney, was directed to sign the consent form that listed all the risks, but really she didn't have a choice in the matter - what was she going to do: not give the consent when we'd been told he needed the surgery to save his life??  We were 100% given the impression that the neurosurgeon on the case was the only option we had for whatever reason and that, without that surgery at that time, he would die, right then.

Later I learned that was not necessarily true.  The surgery 

could possibly have been delayed or maybe even avoided 

with no change in prognosis.  [When we met with the team of top neuro-oncologists at Duke later, we learned that the aggressive growth pattern of GBM meant that it doubled in size every three weeks and that, because of the time required for recovery after surgery before treatment could be started, since the surgery the remaining portion of the tumor had grown to almost half of what the size of the tumor was originally.  In fact, the Duke doctors said they felt there had been "very little surgical benefit" for Dad.] 

I know now that there were other surgical and non-surgical options that should have at least been discussed with us, if only to explain why they might not have been recommended by that particular neurosurgeon in my dad's case.  Because they weren't even mentioned, though, I don't know if they were viable options or not.  At that point, though, we didn't know there were any other choices and we weren't told any differently, and so we just went with what was presented to us as the only course of action.  And so I am left to wonder - why didn't the surgeon even consider trying other techniques that are frequently discussed as a treatment for brain cancer, those that are showing evidence as giving a better surgical and prognostic outcome - things like intraoperative stimulation mapping and Gamma Knife radiation?  Why didn't he bring up the option of delaying surgery to investigate the use of gliadel wafers (which are implanted to deliver medicine right at the tumor site) or to look at the possibility of taking a sample of the tumor for use either for testing to see if the cells were chemo-resistant or for an dendritic cell tumor vaccine?  

Back then, though, we didn't even know what questions to ask, or even that we should be asking questions.  We didn't think about getting a second opinion or doing a background check of any kind on the neurosurgeon, at least partially because we were told that time was of the essence.  I think we assumed that particular neurosurgeon was the best at that hospital or at least that he was the neurosurgeon with the first opening in his surgical schedule.  It seems crazy to me now when I think that I never asked how many of that type of surgery that neurosurgeon had done or how many patients with that same diagnosis were treated in that hospital per year.  [I later asked a nurse on the oncology floor how often they saw GBM patients there, and she said once or twice a year.]  I remember all too well that we were in such a state of shock and panic and so frantic to try to take care of and to protect Dad that we didn't have time to research things.  We just trusted the advice we were given and forged ahead.

These days, I have a note in my cell phone that lists things I want to remember if I am ever in a similar situation (Is that doomsday thinking or preparedness??  I'm not sure.).  It includes these statements:

*When a doctor (or other medical staff member) makes a recommendation, ask what else they considered or could have considered and WHY they came to the conclusion that they should recommend that specific thing.
*When making a decision as to whom (or to where) to turn for care, directly ask WHAT MAKES YOU DIFFERENT FROM OTHER DOCTORS (or what sets this facility or service apart?)? 
*ALWAYS ask what that person's (or that facility's) experience with that diagnosis, that surgical procedure, etc. is SPECIFICALLY, termed in frequencies and outcomes.

In my dad's case, though, without a doubt, we did what we knew to do.  The rest just wasn't something a person would know in everyday life.  Was the right choice made?  Yes, based on the options we were given at the time.  What would we have done, if we knew then what we know now??  Of course I will never know, nor would I if we had been presented with all of the possible choices and then given the opportunity to select one.  But at least in the "fully informed" scenario, we would not feel as if there were facts we weren't told or options that weren't considered.  Today, in the midst of my grief, I certainly don't feel that there was any effort at all by the medical team to try to individualize Dad's treatment, and I am left to wonder why we were only given certain information.  Did the medical team actually feel as if it were our responsibility to do the research and then to ask questions about the other possible treatments?  Did they have such as strong opinion about what the best course of action was that they didn't tell us what else could have been done?  Did they think we were somehow incapable of understanding the more complex information about other options?  Did they think we (or Dad) weren't deserving of knowing about those alternatives?  Did they themselves not know what else was available?  Did they lack the training in performing the other techniques?  Chalk that up to the list of things we will never really know.

Dog Tags

Sometimes when I think back to during the time when my dad was sick, I remember a detail that I had forgotten or overlooked in my memories before.  

Today I remembered his dog tags.

When I was growing up, whenever I asked my dad about his experience serving in Vietnam, he always talked about how his job there was to guard a building with weapons in it, often on an overnight shift.  

My dad was never a "night owl;" as far back as I can remember, he was much more of a morning person, and I guess that was true when he was in the service, too, because he often commented when he talked about that time about how hard it was for him to stay awake on his overnight shifts.  He said he usually ran around and around the building he was assigned to guard so that he would stay awake and alert during those shifts.  The only problem with this plan, he reported, was that he had to wear his dog tags at all times and, as they hung from the chain around his neck, they drove him crazy bouncing against his chest as he ran.  Ever the improviser, though, he thought of a solution to this problem too: he took the dog tags off from around his neck and put them in his pants - in his jock strap, to be exact. 

It's kind of funny to think that a person can be proud of someone else before that person was even born or before they knew each other, but I know it's possible, because, picturing my dad as a young soldier in a foreign land, before I was born, doing what he had to do to get his job done and to defend our country, I feel such a sense of pride and respect, the same pride and respect that I have had for him throughout my life. 

But those dog tags from Dad's days in Vietnam aren't the ones I think about most often these days.  The dog tags on my mind are the ones that Dad wore on a chain around his neck as a 66 year-old man as he trained for the Ironman triathlon.  He tucked those into his shirt as he rode his bike or ran, and, the day before he became disoriented on a run and our campaign against his brain cancer began, the chain that held those dog tags broke.  And so, on that fateful day, he set out for the first time in many months without any form of identification at all.  

I think when most people think about dog tags, they think about toughness.  That's what I think about, too, because it was that, along with his strength and resilience that day that allowed Dad to dig deep enough so that, even in his state of confusion coming from the tumor the size of a racquetball in his brain, he could remember not just his home phone number (which was called first by the police but went unanswered because my mom was out of town) but also my aunt's cell phone number, which he also recalled and then gave to the police who had been called to the scene because he somehow also remembered that my mom was out of town that day and realized he needed to call someone local.

I have spent time, some while Dad was sick and even more since he went on ahead, thinking about how things would have likely gone had he not had the fortitude to pull out that information in those few moments before he was taken to the hospital by ambulance, before he had a couple of seizures, and before he quit breathing and had to be put on life support temporarily until he could be stabilized.  It is nothing short of terrifying to think that all of that would have been going on and no one in our family would have been able to be notified so that we could all get there to be with him.  It's horrifying to think about the fact that he would have been a Missing Person for an undetermined amount of time, because, with my mom out of town overnight that night, it is highly likely that no one would have realized that he didn't make it home after his run that afternoon.  We would not have known that anything out of the ordinary was going on.  Again and again, it hits me that, even with as bad as it was when he first got sick and throughout his illness, it could have been worse.  At least we knew where he was, and what was going on with him, and at least we were able to be with him. 

Dad, wearing the dog tags, competing in what ended up being his last race, one month prior to his diagnosis of brain cancer

In the days just before and just after his surgery, Dad worried a lot about what he called "loose ends."  As it would be for any of us whose life was put on hold in the blink of an eye, it was unnerving and extremely anxiety-causing for Dad that he had not been able to prepare for the time he was having to miss work and everything else for which he considered himself to be responsible.  In the midst of the constant stream of worries he had about his health and about needing to take care of the responsibilities in his personal and professional roles in life, he said he wanted to get the chain that had held his dog tags fixed, "so that I'll have it ready as soon as I can get back on the road."

And so, sitting in the hospital room with him in the Neuro-ICU, I searched on the Internet and found a company that sold replacement chains and ordered one for him; he was visibly relieved when I told him that a new chain was being sent to him in the mail.  And that's where the meaning of those dog tags deepens in our story; instead of standing only for toughness, Dad's dog tags also represented Hopefulness, and we desperately needed everything we could get to bolster both of those qualities as we entered into a more grueling battle than any of us could even imagine at that point.

Follow-up on Foster the Cat

One question I get asked pretty often by people who've read my family's story is this: What ever happened to Foster the cat?  

As I've mentioned, my mom is not a big fan of felines.  We had various pet cats while I was growing up and my parents had a cat named Sport who had passed away a year or so before my dad got sick, but Dad was always more the cat person between the two of them.  

I think I can speak for my mom when I say that there were no regrets about having gotten a cat for my dad after he got out of rehab; his Bucket List had been revised in such a drastic way when he got sick, and there weren't a lot of things on his list during that time that he could do because of the impairments that came from the tumor and because of the treatment he was undergoing.  Getting him a kitten was one of the few requests we could fulfill for him, and we were happy that his wish was able to be granted.  

Dad loved having Foster; in fact, he said that getting Foster was the "second best thing" that had happened to him since he'd gotten sick. ("The first best is having my kids and my grandkids around more," he said.)  He and Foster napped together and hung out together, and, when they weren't doing that, Dad enjoyed watching Foster play.

Unfortunately, though, Dad didn't get better with the treatments; in fact, he got worse, and he was only around for about six weeks after Foster joined the family.  

Mom didn't want a cat.  She had two greyhounds, one of whom was elderly and in poor health, and Foster tormented both of them.  He constantly tried to escape whenever an exterior door to the house was opened, and Mom didn't want to have to worry about him getting lost or hurt outside.  With Dad not around to take pleasure in Foster anymore, we agreed we needed to find a new home for the cat.

But this wasn't just any cat - it was Dad's cat - and, other than Dad's car, it was the first time we had to make a decision of what to do something of his - something he had loved, even if just for a short time.  Something he should still be around to love.  Ouch.

So we didn't want to let just anybody have him; ideally, we wanted him to go to a home with children to play with and to a family that would report back to us periodically about how he was doing.  I felt like it would be like losing a part of Dad if we lost track of Foster, and all of us were already battling against such sadness that I didn't want one more loss to add to the mix.

A couple of my parents' friends offered to take Foster when they heard about our situation, but neither had children and we thought Foster would be happier if he had some kids to play with.  Both of my sisters and I considered taking him, but all three of us already had two cats each and we weren't sure the younger, more energetic Foster would fit in.  

Taking a cat nap in a gift basket

Six weeks after my dad went on ahead, my siblings and I and our spouses and children all gathered again at my parents' house; because my dad had expressed his desire to be cremated and the cremation couldn't be completed before some of the family needed to leave town the month before, we had planned the memorial celebration for a few days after his death and the burial several weeks later so we could all make it back for the service.

That weekend, we talked about what would be best for Foster, and, to our delight, my brother and his wife offered to take him back with them and their two children when they returned a few days later to Philadelphia.  It seemed like the perfect solution; they already had one cat but thought she and Foster would work out any differences in time as needed.  

We were apprehensive about how Foster would behave on the plane ride, but they reported that he did fine. (Don't tell the airline, but he even got to get out of the carrier and sit in my niece's lap for awhile on the flight!)  

Since then, he has adjusted to living with them, and he and their first cat Greta have called a truce.  I know my dad would be glad that his cat has such a great life, playing with my niece and my nephew and going inside and outside as often as he wants, and we are grateful that he ended up in such a good place and that we get to hear funny Foster stories so often.  

At home with my niece, who is showing
him a photo of my parents

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll

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 3 - Whew, I Need a Vacation!

Even though the nights in the ICU were long and hard and scary, we did our best to make the time during the day not that way for Dad in the days leading up to his surgery.  We talked him into drinking milkshakes and eating hamburgers ("I'm going to have to have to run 20 miles to burn this off!" he declared before he consumed each thing we brought him.) We tried to keep our terror at bay in front of him.  We took turns spending time with him; between my mom, my aunts, my sisters, and me, one of more of us was with him around the clock.  We wanted to comfort and protect and care for him; it was start of our Whatever It Takes Plan, and we were solidly committed to being right there for his sake and for ours.


There were lots of medication adjustments during this time; it seemed like the plan was being cobbled together, and I desperately wanted the doctors to get their act together and figure it out!  Dad was being given a massive dose of steroids to address the swelling in his brain around the tumor site.  With the steroids, he couldn’t sleep.  The nurses kept asking him what his pain level was on the pain scale, and he almost always said it was around a 5 or 6 out of 10.  Sometimes the nurse that asked thought that number warranted pain medicine for him; sometimes he or she didn’t.  When he got the pain meds, he dozed for a short period of time, but, like during that first night, he was very restless, anxious, and talkative even in his sleep.


The oddity of the comments Dad made in his sleep was increasing; at one point he thought there were monkeys sitting on a couch in his room. (There were no monkeys and no couch.)  Some remarks were casual; he actually said “I’m bored” in his sleep at least ten times each night.  Some of the utterances he threw out didn’t make sense in the context in which he said them (“I’m going to the oyster bar and I’m going to eat a dozen!”), but we were usually able to piece things together and make an educated guess as to what he was talking about (often, for some reason, New Orleans).  Even in his sleep, he chattered about a few things he hoped to be able to do when he got out of the hospital; several times, he exclaimed, “Whew!  I need a vacation!”


He was obviously aware of the gravity of the situation on some level, because some of his sleep-talk involved worrying out loud about his health, about Mom, and about work and finances.  He wished aloud that his dog Buddy could sleep in the bed with him and wondered when he would be able to exercise again (“Hopefully this weekend,” he said, in answer to his own question.)  In between the short bursts of sleep, Dad was mostly oriented and very chatty; he talked about the fact that it was his birthday and how much he wanted to get out of the hospital to do something to celebrate.  He asked about when he could see his grandchildren and his mom, who was on hospice in a nursing home nearby.  It was all very overwhelming and very sad, and it made us want to close ranks, to hover over him to try to protect him, as we anxiously waited the surgery that we hoped and prayed would clear out that damn tumor that was causing all of this.


On the day before the surgery, the neurosurgeon paid Dad a brief visit during which he informed us that the full-body CT scan had shown no evidence of cancer in any other part of Dad's body.  We rejoiced, although that turned out to be both premature and naive; we later found out that it actually would have been better news if the cancer in his brain was the result of another type of cancer that had spread from elsewhere in his body.  (Other cancers are typically less aggressive and offer more treatment options than the type that Dad had.)  At the time, though, we were happy for what we thought was Good News; it helped us to steel ourselves for whatever else was coming down the pipe.


Dr. Personality (NOT) also ominously informed us that the MRI had shown a mass that was 3-4 cm in size on the right side of Dad's brain and that the tumor was irregular in shape which would make it more of a "surgical challenge."  Luckily, Dad was only half-listening at the time, and, to keep from alarming him, we asked the doctor to go out into the hall with us to discuss the rest of the findings.  There, in the glass hallway of the ICU, the neurosurgeon told us he thought the mass was brain cancer and that Dad would likely be in the hospital for three days after the surgery and then would start a pill-form of chemo plus radiation about ten days later.  We knew that Dad could see us through the glass wall, and so we held our faces still so as not to alarm him.  Before I could get the notebook with our list of questions, the doctor flew off down the hallway, leaving us with even more to worry about.

The neurologist came by later that day, and he answered as many of our questions as he could.  Some things, he said, we just had to wait and see about; I hated that - I wanted a Plan!  When we reported the lack of sleep and the restlessness Dad was experiencing at night, the doctor wrote an order for a different nighttime medication in hopes that Dad’s quality of sleep would improve.  He said Dad had to continue on the high dose of steroid and also on the anti-seizure medications indefinitely. 


Dad had had an EEG the day before to check for residual seizure activity, and we asked the neurologist about the results.  He checked the file and said the results weren’t back, which began the game of Pass The Buck/I Don’t Know – Ask Someone Else that we played with the medical staff over the next three months.


In between doctor visits, the nurse brought in a consent form for my mom to sign for the surgery.  I thought it was peculiar that it was the nurse who was assigned to go over the risks and then to get the permission, especially considering how very risky it would be, rather than the two physicians who had been by earlier; I wondered if the doctors just couldn't be bothered by such a task or if they thought the nurse had a better way (and chance) of doing what needed to be done in this case.  The risks were all there on the consent form in black and white; we hadn't been given any other options at all, though, so Mom signed what she had to sign and we steeled ourselves so that we could go back into Dad's room with smiles on our faces, as his Guards and his Warriors, ready to face whatever needed to be faced.

Coming soon … Part 4 - Numbers