What I Have Come To Believe - Part 3: Fighting Cliches'

A follow-up to "What I Have Come to Believe - Part 1" and "Part 2: A Quest for Patterns and Control":

Fighting Cliches'

The words we use to talk about cancer can influence how we think about the disease - and how we think about the people who have been touched by it.  Those who survive are often called "winners" and are said to be "victorious." Those who have not survived their cancer are called "angels" and are said to be "in a better place."  Whenever I hear those descriptive terms used in that context, though, it makes me wonder if it's being implied that the opposite is true when the story has had a different ending, never a good thing in my book for a process like being diagnosed and treated for cancer, the outcome of which is frequently tied to many different variables that are often very much out of one's control.  

People talk about fighting cancer ... but the term "fighting" implies that there are winners and losers, just as surrendering sounds like giving up.   Certainly it isn't being implied that those unlucky enough to die after being diagnosed with a more aggressive type of cancer or an unfortunate side-effect like infection are losers who have given up.  

My dad was tough; he challenged himself on a daily basis in the physical realm though countless miles of running and biking on the road and grueling workouts, and he worked his whole life to better himself in any way that he could.  At no point in his life was he a loser or a quitter, and he sure as hell never surrendered, even though he was not able to survive the cancer that took his life.  From Day One of his diagnosis, he said he was ready to go back to work, and he continued to say that up until a few days before he died.  That is the opposite of surrendering, if you ask me.  

Advice that I hear being given out a lot in reference to a person who is dealing with serious illness or another extreme trial in life is "Stay strong."  I'm not even sure what that means; don't cry ... don't refuse treatment ... don't die???  And the phrase that is used a lot with intent to encourage a person with cancer - "Never, Ever Give Up", or "NEGU," as it is sometimes abbreviated - makes me wonder if those using that slogan have considered that doing so implies giving up has occurred when one cannot survive despite everyone's best efforts.  When treatment has failed and the disease is taking over, the pressure from hearing cliches like "NEGU" must be almost as unbearable as the disease can be.

Instead of "Never, Ever Give Up," what cancer and grief have taught me is to "Never say never."  More than anything else in my life, the experiences I have had since my dad got sick have shown me that there is simply no way to understand some things without having gone through them.  Lots of things that I thought I knew have fallen by the wayside over the past 2.5 years; now I either have knowledge of a different set of facts - or a different perspective - or just the understanding that there are many things I don't know at this point.

Maybe it's ok to use the term fighting when we're talking about cancer, as long as there is an awareness of the fact that sometimes FIGHTING can be doing something other than getting an aggressive treatment. Treatment and all the things that go along with it are an individual decision, one that can be made exponentially harder because of the time factor, plus the shock, entering into end-stage decisions. I think a lot of people with aggressive cancers opt to try an aggressive treatment as they attempt to figure out what their goals are (their Revised Bucket Lists) - it's like that is the Default when we are faced with the initial decision, and then, if that proves unsuccessful or unsatisfactory, they go to a more traditional treatment or to less harsh remedies or even no treatment at all.  Fighting can be seen as doing any number of things - or sometimes by doing nothing at all, depending on the situation and on one's perspective.

With an aggressive cancer like GBM, the survival statistics are horrible to look at, but people tend to hang onto the knowledge that nothing is for sure; believing that a loved one will beat the odds is not unreasonable, and in many cases Hope is one of the few things that can be controlled. Those dealing with aggressive cancer may consider treatments that have less severe side effects than chemo; they may have an "if-then" list or just an idea of "if" this happens, "then" another option will be considered or pursued.  I know all too well that when the treatment options and their pros and cons have all been laid out, what to do can be a tough, tough, thing to hammer out, but here's the bottom line: sometimes saving a life is not the same thing as extending it. 

From "http://ozbraintumour.info/"

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.  

Childhood Cancer - How We Can Help

Did you know that, despite that fact that over 13,500 children will be diagnosed with cancer and about 2,500 kids in the U.S. alone will die from this disease this year, only about 4% percent of the annual budget of the taxpayer-funded National Cancer Institute (NCI) is dedicated to childhood cancer?  

Hearing that makes we want to do something about it.  All cancers are devastating; childhood cancers are the worst in that the smallest, most vulnerable amongst us are affected, not just by the disease but by the ravages of the often brutal treatment.  Obviously the children who have been diagnosed with cancer who have not survived have had a great deal stolen from them, as have their families.  But here's another point to consider:  even children with cancer who do survive are being robbed of those months and years of their childhood and are often left with secondary effects of the cancers and/or the treatments that they had to endure to make it to adulthood.

Through reading about cancer in general and then about childhood cancer specifically, I found out about a campaign called The Truth 365, which is an organized effort to educate the public and generate action to help fight childhood cancer through film and social media.  Through the group behind this campaign, individuals like you and me are able to DO SOMETHING to help, through taking just a few minutes of our time.  It isn't a telethon or a fundraiser; it's an awareness campaign, and it's something that has never been done before in this way.

If you are interested in helping in the effort to protect children from this terrible disease, post a link to this blog entry on your social media accounts like Facebook and Twitter and share it with people you know. Then take some time (about an hour, but well worth it) to watch the powerful documentary film produced for The Truth 365 to find out some simple things that you can do to help battle this terrible beast:

The organizers of this group are trying to raise awareness to increase funding for research and treatment of childhood cancers, not just so that more children who are diagnosed with cancer live but also so that those who do survive are not left with a lifetime of detrimental side effects of treatment.  They want people to understand that the statistics that we hear - that up to 75-80% of children who are diagnosed with cancer survive - paint a picture that is not all together accurate.  That statistic, for example, is only based on a five year survival rate, and many of the children who make it to that point do not go on to survive longer term.  They want everyone to be aware that the increase in survival rates that we hear about in kids with cancer over the past few decades have mostly come from these children being given greater and stronger amounts of drugs that were developed for use in adults and that very often no one knows exactly what the effects of these treatments in children will be.  They want us to see that doctors and other health care professionals who are trained to treat these very sick kids and to research the treatments that can save them are having to spend time fighting for funding instead.  They want us to know that with no money and with just a few minutes of our time, we can do something to help in this cause.

The film will enlighten you to the facts that we all need to know, whether we personally know a child who has cancer or not.  Through the film and through viewing the group's website, you will find out about action steps that need to be taken to further increase awareness and support and to secure the funding needed.  You will learn in viewing the film is that each of our Congressmen have been asked to sign a pledge which affirms his or her support for children with cancer.  

A listing of those U.S. Representatives and Senators who have signed the pledge has been posted here -  

http://www.thetruth365.org/pledge/  

by state, so that we can see who still needs to be encouraged to sign this pledge.  For example, in Tennessee, two members of Congress have yet to commit: 

They are asking us to contact members of Congress who have not signed the pledge to ask them to do so.  Most of the contact info you need is right there on the site; if you live in Tennessee, you can click here for Bob Corker's contact info and here to contact Chuck Fleischmann to let them know the importance of their commitment to this issue.

When you get to the website, bookmark and check back as often as possible to find out about the latest iniative of the group  and how you can help, often with just the click of a mouse button.  

There are lots of causes and organizations that ask for donations of money and items, especially during this time of year, but this one is unique in that all they are asking for is a few minutes of our time.  The greatest reflection on us as a society and in my opinion as individuals is the way we treat those who are less fortunate than we, and I can't think of an easier way to do that than to participate in this effort.

The Truth about Childhood Cancer

September is National Childhood Cancer Awareness Month, and I'd like to share some information about a project about which I have recently learned in regards to childhood cancer.

This project, called The Truth 365, is a ground-breaking, grass-roots documentary film and social media campaign that has set a goal to give a voice to all children fighting cancer and those who care about them.  They want to make all of us aware of the things that need to be done in battling pediatric cancer and to spotlight the state of childhood cancer research funding by uniting the childhood cancer community, government officials, top pediatric oncologists, and several of the country's most influential celebrities. 

This is an important effort, and here's why:  The Truth is that childhood cancer research is vastly underfunded, and the funding that's needed needs to become a priority for all of us, right now, because childhood cancer is the #1 cause of disease-related death in children under the age of 14, killing more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. In the United States alone, 13,500 children are diagnosed with cancer every year, which translates to 46 children and their families getting a cancer diagnosis every single day, 365 days a year.  And although one out of every five of these children who are diagnosed with cancer will die, those who survive are often left with life-changing side effects from the cancer and the treatment that was used, which is often based on research done on adults with cancer instead of on children. The Truth is that the incidence of invasive pediatric cancers is up 29% in the past 20 years, and yet only $20,000 is invested in cancer research for every $595,000 invested in pediatric AIDS research.  Of the National Cancer Institute's budget of $4.6 billion, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancer combined received less than 4%.

The Truth is that this isn't right - and that it's not acceptable just to look away, as if these statistics don't affect every one of us, because they do.  To learn more, check out the Facebook page for this campaign and the group's website  to find out what's going on in their efforts, and stay tuned for the launch of their film which is due out on September 13.  

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!

Part 20 - Birthday Chemo

Continued from Part 19

Part Three of Our Trip To Duke/Our Journey of Hope 

My middle sister’s husband took a red-eye flight overnight to join us on our third day in Durham.  As happy as my mom, my sister, and I were to have him there for reinforcement, I think Dad was even happier; he was really grateful for some male company.  The weather had gotten chilly since we’d gotten there; my brother-in-law had worn a hat and had brought a matching one for Dad, which Dad put on as soon as he got it.  It was my sister’s birthday that day; we sang Happy Birthday to her in the hotel room before we left for our second day of appointments at the Brain Tumor Clinic.  

The birthday girl with Dad, who's wearing his new hat

Since we had additional support that day, we decided to forego the Shuttle Ride From Hell and have my brother-in-law drop us off at the clinic for our mid-morning appointment so that he could get a couple of hours of sleep in the hotel room and then pack up and check out before picking us up so that we hit the road after the appointment.  

We made it to the clinic in plenty of time and were called back into a conference room just a few minutes after our arrival.  Doctor #1 from yesterday entered the room along with Doctor #2, the guy who was actually in charge of the clinical trial with Avastin there.  They got right down to business, filling us in on what a thorough review of Dad’s records and test results had revealed:  “The MRI from just before he left rehab,” Doctor #2 said, “showed that the tumor had more than doubled in size since the debulking four weeks prior to the scan.  There was essentially very limited surgical benefit.”  

The room was quiet for a minute while we took in this information.  I couldn’t stop myself from quickly calculating in my head that if the tumor was originally approximately 4 cm in size and about 80% was removed during the surgery, what was left was about 0.8 cm.  Now they were saying that that had more than doubled in only four weeks, plus another five days had passed since the MRI, and so the tumor was probably close to 2 cm in size at this point.  And, even more alarmingly, in less than another month, it could potentially be back to the size it was when it was originally discovered.  Back to Square One.  Damn.

My next thought was how to bolster Dad’s spirits, since at this point I didn't think I could protect him from the news that had just spilled out like a toxic gas leak in the room.  I looked over at him and saw him flipping through a magazine that had been left out on the conference table.  I couldn’t tell if he'd heard what had been said or not, and I couldn’t decide if I thought it was worse if he had heard it and was in shock or if he was so off-task that he hadn’t even heard the news.

I told myself that we had to focus on what could be done, not what had or hadn’t been done or anything else, and so I charged ahead:  “What do we do now?” I asked these men, who were reputed to be some of the leaders in research and treatment of brain cancer in the country. 

Their answer was simple:  “Let’s get the nurse practitioner in here to explain the details to you and let’s get Avastin going.”

Well, OK.   Nurse practitioner came in with a neatly organized 3-ring binder full of info about Avastin and the two types of chemotherapy Dad would be getting according to their protocol.  She went over it all in detail and also explained how we could get in touch with someone at their office should we have problems or questions.   Just after she finished talking, another nurse stuck her head in the room and said she had just gotten a phone call from the nurse practitioner at Dad’s oncologist’s office at home, who said that since Avastin was not covered by Medicare, they had cancelled the appointment for Dad to get the Avastin and chemo there on Monday.  WHAT???  There was some back-and-forth on this between the staff there; finally the nurse practitioner left the room to try to get in touch with Dad’s oncologist to see what was going on.

While she was gone, the two doctors asked if we had any questions about anything for them (heh!) – um, just a few, yeah!  We tried to be succinct, but we felt like it was our one-shot at getting a lot of information that we needed to know.  They were extremely gracious and patient.  We found out that the team at the Brain Tumor Clinic at Duke saw about 750 patients with newly diagnosed GBM yearly (in comparison to the 5 or fewer cases most oncologists saw annually, even in major cities).  We discussed alternate treatments that my sister and I had read or heard about and why the doctors felt sure that Avastin was a better option for Dad at this point.  We asked about complementary types of medicines like melatonin and other supplements, calcium channel blockers, and Accutane, all of which have been shown in some studies to enhance the positive effects of chemo on this type of brain cancer.  Over and over again we heard them say that Avastin was The Magic Bullet for GBM and that, especially paired with these two types of chemotherapy and followed up by radiation as per their protocol, and that they expected us to see good improvement in function for Dad and significant tumor reduction in a relatively short period of time.  “It’s the one treatment that can shrink this type of tumor and improve neurological function, sometimes in a matter of days,” Doctor #2 said.

As far as I could tell, Dad wasn’t paying attention to much of what was being discussed in the room during this time; he was still browsing through a month-old copy of Time Magazine (WHY was that even in THERE?  Irony, anyone?).  When one of the doctors asked him directly if he had any questions, he said, “How did I even get this?”  The doctors launched into an analysis of several things that are being researched as possible causation factors for a person with a “predisposition” for this type of cancer – farming chemicals, environmental pollutants, and one that really caught our attention:  Agent Orange exposure from time spent in certain areas of Vietnam during the Vietnam War.  The doctors said that one of the residents in their clinic was gathering information as part of a long-term study of possible causation factors for GBM and asked if Dad would like to participate.  Dad immediately said, “Yes!”  I asked what participation would entail, and we were told a blood sample and a DNA sample would be taken, and an interview that would take about an hour and could be done over the phone later would be conducted.  Dad was eager to sign the papers to give his consent for that, and then we moved on to the next topic:  the treatment protocol.

The Duke regiment for GBM treatment involved getting Avastin and the stronger type of chemo called CPT-11 by I.V. once every other week.  For five days every month, the other type of chemo, Temodar, was also administered in pill form.  This cycle would repeat over the course of four months, after which the CPT-11 would be discontinued, daily radiation would be added, and the Avastin/Temodar would be continued for another month.  And then we would see how things were looking.  

The doctors said that Dad could have only one beer per day during chemo because his liver would already be working overtime to process the chemo.  ("I guess I can live with that," he said.)  They said that the steroids should be tapered over the next few weeks under the direction of the at-home oncologist and that if sleep problems persisted Dad should just take Tylenol PM to help him sleep at night instead of something stronger.   We asked about supplements as part of the treatment, and the subject of the use of medicinal marijuana came up.  “I’d say you should try to get some of that,” Doctor #1 said.  “It can help with sleep, anxiety, and nausea.”  Diving right in, my sister asked where we were supposed to get it.  “Oh, you know,” Doctor #2 said, “just go to a bar and see who looks like they might have some for sale.”  Hmmmm.  We weren’t sure about that option, but I wrote down “marijuana” on our to-do list, and the discussion moved on.

They handed us a prescription for nausea, just in case, and they said we should keep something on hand for diarrhea, which was often a side effect of the CPT-11, too.  At that, Dad perked up and chimed in, “I HOPE I have diarrhea!  Not being able to exercise in weeks is giving me the opposite problem!”  Everyone laughed.  The doctors encouraged Dad to avoid napping during the daytime and to exercise as much as he could “on the recumbent bike or just walking around the block.”  Mom, my sister, and I exchanged looks on that one – Dad had been struggling to get from the bedroom to the den and back a few times daily, using a walker and with someone right beside him for supervision, and so we couldn’t really even imagine him making a loop around the neighborhood.  “Just wait!” Doctor #1 said after he saw our exchange.  “I predict that by Monday he won’t even need the walker to walk.”  OK, sign us up!!

In the midst of the Q & A session, the nurse practitioner came back in and said she had spoken to Dad’s oncologist, who had told her that as far as he knew Avastin was not covered by Medicare for initially-diagnosed GBM, and, at $20,000 a pop, he didn’t want to order it for Dad until the financial end of things was cleared up.  After more back-and-forth on this, Doctor #2 left the room for a minute and then came back in and said, “I want him to get Avastin as soon as possible, and so let’s do it here, today.  Our financial secretary says that Medicare just started covering it for cases like this last week and that it shouldn’t be a problem, but if it is, our clinic will eat the costs for this dose of it and then your oncologist’s office can have the next two weeks to figure out how they are going to get it covered or paid for before you need it again.”  

Wow.  It took about 30 seconds for that to sink in, and then Mom, J, and I were in tears.  J said, “Thank you!!!  It’s my birthday, and this is the best birthday present I’ve ever gotten!”  There were smiles all around.

“You’ll need to stay in town another night just to be sure he doesn’t have any unexpected side effects.  The chemo lab has one opening left for today, and it’s in ten minutes.  Can you stay an extra night, and can you get him right upstairs?”  Um, does a bear live in the woods??

With all the commotion, Dad hadn’t really caught on to exactly what had transpired, and so I just gave it to him in a nutshell:  “You’re going right now to get the medicine that is really going to help you!”  

“Well, let’s go!” Dad said, and we were off to the chemo lab.  

By the time we got upstairs and had filled out the paperwork and then gotten called back to the chemo room, Dad was very anxious; he wasn’t sure what was happening and was very overwhelmed.  The nurse decided to give him a sedative as soon as he had been hooked up to the I.V., which she did in a flash.  She gave us some pamphlets and talked about possible side effects of the treatment.  “It's very likely that you will lose your hair,” she said somberly.  Dad perked up at the mention of that; he very animatedly said, “How soon will it come out?  I hate that I haven’t been able to get my head shaved lately, and I want my head to be completely smooth!”  The nurse said that was the first time any of her patients had actually gotten excited about the likelihood of going bald!

Just before Dad drifted off to sleep, he looked at me with wide eyes and said, “I know the doctor said this stuff is really expensive.  How am going to pay for it?”  I told him that he shouldn’t worry about it because his insurance would cover it, and, with half-closed eyes, he mumbled, “Thanks for the Medicare, Obama!”

While the toxic chemo and Avastin The Magic Bullet slowly dripped into Dad’s veins, he slept so deeply in the chemo recliner that he actually snored a little.  Huddled in the corner beside him, I conjured up thoughts of Pac-Man gobbling up the cancer cells (I’d read that this could be helpful and figured what the hell!).  Mom and J went back downstairs to meet with the social worker to learn about possible benefits and programs for which Dad might qualify.  The nurses bustled around busily, but the room was quiet.  The space felt sacred.  I focused on the high-dollar juice dripping from the bags on the IV pole and thought, “Bring on the Magic!”

Continued here … Part 21 - Erring on the Side of Hope 

The Sandman Has Left the Building

 

When a person gets a splinter in his hand or foot, pain comes from the foreign object as well as from the swelling of the tissue around it.  A similar thing happens with a brain tumor in that the surrounding tissue in the brain swells, which can cause a variety of problems other than just pain, including an increase of neurological symptoms and seizures.  This swelling, or “edema,” is treated by steroids, usually given in high doses for a long period of time.

Like most of the medications given to cancer patients, with this type of treatment comes the potential for side effects, many of which in turn require lifestyle changes and/or the addition of other medications.  For example, steroids like the Dexamethasone that was given to my dad can cause problems like severe heartburn, swelling of the face and extremities, muscle weakness, headaches, and extreme difficulty sleeping.  The risks were even greater than usual given the dosage at and prolonged period of time during which my dad had to take this type of medication, which is 30 times more potent than the naturally occurring hormone cortisol and 5 times stronger than the most commonly prescribed steroid prednisone – and Dad was on four times the normal dosage of it. This powerful steroid, coupled with the chemo which had side-effects like nausea, a decrease in appetite, extreme fatigue, muscle weakness, and decreased immunity, among other things, contributed to the ongoing struggle of trying to provide comfort while waiting for the treatment to affect the cancer cells. 

And herein lies the dilemma that we faced, one that is faced by every cancer patient and his or her family, especially in cases when the treatment is not considered to be a potential cure.  From my perspective, when the goal moves from a cure to providing comfort through symptom relief and buying time, the decision of which remedy to try and, in cases like ours, which medical professional to listen to, becomes even more complicated. 

Throughout Dad’s illness, he had problems in several areas that affected his mobility, independence, and safety.  One of the most pervasive obstacles, though, was the chronic insomnia, which, oddly, also came with persistent fatigue.  Dad talked a lot about being so tired and really wanting to be able to go to sleep.  Nights were the worst for him as that’s when he expected and was expected to sleep and that’s when his inability to follow a typical schedule really seemed to bother him the most.  Every day he had such Big Plans to sleep that night, and every night he just couldn’t do it.  It wasn’t as if he had his nights and days mixed up, either, like people sometimes do; except for the couple hours at a time of deep, pain-medication-induced sleep and a few short naps here and there  – he just really did not sleep. 

Because he needed supervision at first and assistance later to get up to go to the bathroom or to get medicine or something to drink due to the lack of sensation on his left side and problems with his balance and later weakness, at least one of us was awake with him around the clock during the entire time he was sick.  We took turns sitting with him and lying in the bed with him.  If we turned out the lights and the room got quiet for a minute, he would sometimes say, “Hey!  Is anybody even in here?” to get our attention.  He seemed to really need companionship all the time, for security and safety and just plain old conversation.

The tricky thing about taking such a powerful steroid over time is that it eventually takes over and shuts down the body’s production of the naturally occurring hormone that it is at first just supplementing.  That makes it life-threatening to have too drastic of an adjustment in the dosage of the drug.  The dosage has to be closely monitored and medically supervised for just this reason.

We were told by doctors that the steroids helped to prevent seizures (although he was also on an anti-seizure medication), to decrease headaches (although those persisted and then worsened), and to keep the remaining tumor from compressing other brain structures.  Of course, every time the topic of taking steroids came up in front of Dad, he chimed in and said he hoped he didn’t get caught for doping when he finally made it to the Olympics or the Tour de France.  We explained to him several times that it was a totally different type of steroid, but he preferred to pretend that the type he was taking was going to make him stronger, and, after awhile, we figured it was a good way for him to “psych himself up,” as he liked to say.

I was glad that he was being given a drug that targeted all of those problems, but I grew to hate the side-effects for him, especially the muscle weakness, the sleeplessness, and later, the suppression of his immune system that I think was a big part of how he got so sick at the end.

Every chance we got to talk to a doctor about Dad’s case, we expressed our concerns about the insomnia and the resultant fatigue.  We were told by the neurosurgeon in the hospital just after Dad’s surgery that the dosage would be decreased over time under the supervision of the oncologist.  When we met with the oncologist in his office while Dad was in rehab, he wanted to wait until Dad was discharged from Rehab.  When that happened, the oncologist and the rehab director wanted to wait until we consulted with the neuro-oncologists at the Brain Tumor Clinic at Duke.  The neuro-oncologists recommended decreasing the dosage after the second dosage of chemo three weeks later, but at that time his headaches had gotten worse and so the oncologist was hesitant to change the dosage and instead upped the pain medication which was supposed to help Dad sleep but didn’t.  He said we would look at a change in the steroids again at the next chemo appointment, to which Dad never made it because he ended up in the hospital with a life-threatening infection.  From there, he came home on hospice. 

I guess our optimism every day about the possibility of Dad being able to sleep that night was part of our Denial.  Or our Bargaining.  Or our Desperation.  One of the last nights he was in the ICU, my sister and her husband were with him, and he came up with the idea that if he had some sunglasses on he would be able to sleep.  The room was fairly dark anyway, but they were game to try anything that seemed like it might help him.  My brother-in-law had recently had Lasix surgery and just happened to have a pair of heavy-duty sunglasses with him, and he gave those to Dad.  Dad put them on and said, “This ought to do the trick,” but again, no luck.  

The one good thing though that came from his 70-plus nights of very little to no sleep was that my mom, my siblings, our spouses, the grandchildren, and I all got to spend more time talking to him.  My sisters and I agree that we spent more time just hanging out with him and talking to him during the time he was sick than we had since we were kids.  He couldn’t really focus on TV or reading for very long, and even music irritated and/or distracted him, and so we just talked.  So I guess in a way I should be grateful to the steroids for increasing the amount of awake-time I got to spend with Dad, but, really, it’s Dad that I am grateful to, for sticking it out, for being such a warrior, and for all those late night talks.