Surviving Terminal Cancer

One of the many things that has surprised and frustrated me since my family learned about my dad's diagnosis of brain cancer is the lack of awareness and knowledge possessed by the medical world as a whole about the specifics of Glioblastoma Multiforme, or GBM.  I understand that the average person probably hasn't ever heard of GBM. Because it's rare, it's just not something that most people have ever had to know about.  Unlike more common types of cancer like breast cancer, lung cancer, and prostate cancer, most people probably don't know someone who has had GBM (lucky for them).  I find it appalling, though, that the medical community, outside of oncologists and neurosurgeons, by and large has never even heard of the diagnosis.  

Last fall, I went to a family doctor to get established as a new patient in the practice.  When the physician came into the room, she introduced herself and then sat down on the rolling stool.  As she asked me questions about my medical history and about my family's medical history, she typed in my answers on a laptop computer.  Eventually we came to the part where she asked about my parents' health, and I told her that my dad had died of GBM.  "How old was he?" she asked, and I gave her the same information that I have given many times about how he was only 67 and was active and seemed to be the picture of health.  In fact, I told her, he was training for an Ironman triathlon.  "Did he swim in a lake to train for that?" she asked, which in all honestly I thought was a little off-topic.  Yes, I told her.  "Oh," she said, "is that where he got the GBM?"  

Her question disoriented me, and it took me a minute to respond. "No," I said, trying really hard to control the anger I felt creeping into my body. "The cause of brain cancer is unknown." She blinked a few times and then said, "Oh!  I'm sorry - I thought GBM was a parasite," she said.

I liked this doctor; she seemed thorough and smart and kind, but the exchange brought to my attention yet again how much of a gap there is in what medical professionals are being taught about this disease.  

That's one reason I am so glad whenever I see GBM featured in the media as it will be in the soon-to-be-released film "Surviving Terminal Cancer" aimed at promoting patient advocacy and public education about cancer and research. 

The film features the story of a man who has lived for 19 years after he was diagnosed with GBM, a disease that has a median survival rate of 14.6 months with the accepted protocol treatment:

This film charts the remarkable story of Ben Williams, professor emeritus of experimental psychology at University of California, San Diego. Diagnosed in 1995 with the most lethal cancer known to medicine, a primary brain tumour called glioblastoma multiforme, he was given just a few months to live. But a natural born maverick, and rigorous scientist, Ben decided he would not go down without a fight. Nineteen years later his story is an inspiration to patients the world over, whilst his case is dismissed by the medical community as just one of a handful of statistical outliers.

"Why are we sticking with a treatment protocol that obviously doesn't work?" the filmmakers ask, as anyone who learns about Ben's story will ask.  The film looks at several less well-known treatment options for cancers like GBM, including some off-brand uses of certain medications and vaccines, like the modified polio vaccine that is currently being used at Preston Robert Tisch Brain Tumor Center at Duke University (where we took my dad for treatment, although he got a different type of treatment, not a vaccine). 

Another reason that I am so interested in this film is that I personally interacted with Ben Williams through email correspondence during the time that my dad was sick.  I connected with Ben when I came across his story on a website called Clinical Trials and Noteworthy Treatments for Brain Tumors during one of the many late-night Internet searches I was desperately conducting.  I sent him a message through the website with a brief description of my dad's medical information, closing by saying "We want to be as thorough as possible in looking at treatment options for both now and in the future.  Your story is among the few things keeping us going as we begin our battle with this terrible disease.  I would love to get your advice if possible."

He emailed me in response later that same day:

With that, he and I entered into a fast-paced exchange of emails, with the communication mostly consisting of me asking questions and him providing more in-depth advice and information about what the data in the research had shown about various treatment regiments, including the use of several types of chemotherapy other than what my dad was taking, off-label use of medications like calcium channel blockers, and various vitamin and herbal supplements.  He had a remarkable way of explaining very complex scientific and medical issues, like gene segments and pharmacological cross-tolerance; I felt like I had access to someone who knew something that might possibly save my dad's life.  I read and reread every email he sent and made long lists of questions which I later posed to Dad's oncologist.  Instead of thinking "Why him? How did he get this horrible disease when he seemed to have everything going in his favor?" I began to catch myself thinking, "Why not him?  Why can't he be the one to beat the odds like Ben has been?"  I believed that we would find a treatment that would work for him, and I believed that he would be ok.

But, as it turned out, I was wrong. Dad didn't get better; in fact, he was getting worse by the day at that point.  Four days after I got the last email from Ben, which included specifics about what he felt we should ask the oncologist to consider, Dad was taken again by ambulance to the hospital, and, although we did not know it at the time, we were propelled into what ended up being the beginning of the end.

A Call for Awareness: A New Goal

As I have shared before on this blog, I am very passionate about my work as an occupational therapist, and for many years I have considered myself an advocate for individuals with disabilities.  However, it wasn’t until I became a caregiver of a person with a catastrophic illness that I really “got it.”  It’s a club no one really wants to join, but at some point many of us will, and, through my experience in helping to take care of my dad as he went through treatment for the brain cancer that took his life a short time later, I learned things as a health care provider, as a daughter, and as a person that I likely wouldn’t have otherwise.  

In today’s health care system, the bottom line is so often seen as the dollar: what's stressed is funding and reimbursement instead of quality patient care.  As a medical professional, I know that it’s easy to get caught up in productivity quotas, documentation, and administrative spreadsheets and paperwork.  But very few of those of us, if any, got into this field for those reasons; by and large, we became health care providers to try to help people.  Somewhere along the way, though, in many cases, our priorities are shifted.  Our focus is changed: we go from looking towards the horizon to staring at the road just in front of us as we work to get through the day-to-day procedures of our jobs.

Like a lot of times when dramatic realizations occur, something happened in my life that caused me to rethink my focus, to shift my priorities, to change my perspective.  Through telling the story of the health care that was provided to my dad during his ten-week long battle with brain cancer, I want to challenge the way other health care providers think about their patients, in hopes that that shift in perspective will help them to provide better care to their patients, especially those who are facing life-altering illness or injury.  I have decided to set a goal of writing a book, one that will come from parts of the story as it has already been told through this blog and from added accounts of what happened during the time of my dad's illness.  My goal is to tell the story piece by piece on this blog so that it can be shared in book format with people who are involved in the treatment and care of individuals with life-changing illness or injury.  

Through this project, I want to bring awareness to other health care providers and rehab professionals about the importance of recognizing that every patient has a story.  I hope to encourage those in the medical field to remember to look towards the horizon as they care for each patient, to think outside of the box, to see things through the patient's eyes, to understand that what they think is important for a patient's recovery may not be the same as the priorities of the patient, and to realize that supporting a patient's family is part of every intervention.  I want to urge rehab professional and others in the health care field to do their part to assist families in accessing services for both themselves and for the patient so that adequate support will be available even after discharge.  I want to remind health care providers that they are in a position to share their expertise in ways that have meaning to the patient, regardless of changes in function or of life expectancy.  I want to emphasize the fact that compassion is a part of every good treatment plan.  I want to tell this story with a goal of inciting a shift in perspective by underscoring the importance of patient-centered intervention and care of the patient as a whole, not just in medical professionals but in everyone who may one day be involved in the care of someone with a life-changing illness or injury.

Stay tuned ...

The Marker

Before my dad went on ahead, I’d never really considered the way that the birthday of a loved one can transform from something that fills you with anticipation and excitement to something that seems so sad.  It seems so odd to me the way that happens; certainly I still want to recognize and celebrate the birth of one of the most important people in my life, even when he isn’t still here to celebrate himself.  I think for my family, the sense of enhanced sorrow and grief that comes with this week is exacerbated by the fact that it was the same week that he was diagnosed with the brain cancer that took his life only ten short weeks later.  That, as much as his absence, makes it seem counterintuitive to celebrate.

For me, in fact, it feels like salt is being rubbed into a wound, and a lot of the emotions that are usually just hanging out beneath the surface on a typical day seem to be bubbling up and threatening to erupt with the week when everything changed for my dad, for my family, and for me.  The annual marker, which I prefer to avoid thinking of as an anniversary since I tend to think of anniversaries as happy and worthy of celebration, approaches without hesitation and haunts us without regard to our ongoing pain. The week represents such a major shift - an ending of things as they were and an awareness of what should have been.

I long for just one more hour, one more conversation, one more hug, one more anything with him.  I want to push through the pain and focus on the importance of the day of the year on which the man who means so much to me came into this world; the challenge to do so is far greater than I ever imagined it would be. There are so many things that my dad will not get to experience now, things he would so love to be a part of or to know about or to see.  His presence in my life continues to shape me on a daily basis, and I do celebrate that fact as much as the grief will allow. Sometimes though, especially when I can’t avoid the what if, the should have, or the should be kind of thinking pattern, I am overwhelmed by it all, missing him so much that I struggle to move through the ache. The only thing that seems to be of comfort to me when I think about those things is to remember the life that he led that I know he considered to be a great one, to recall the way he was filled with such joy and gratitude, and to recognize the fact that I know if he knew anything at all for certain during the days of his illness it was that he was loved.  Happy birthday, Dad; you are loved and you are missed.

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/"

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.  

Awareness and Darkness

In a recent dream I had, someone said to me that I have dark humor.  In the dream, my response was that it isn’t humor.  

“Touche’, Dream Self, and how astute,” I thought when I woke up and remembered that part of the dream.  In actuality, I do feel dark, angry, and ripped off.  

Sometimes I feel like I am I the only one out there who is as angry as I am, about suffering such loss, about stupid Cancer, about unfairness, about what is even though nothing about it is right.  I'm having a hard time coming up with any gratitude about my dad's passing or any peace about my dad flying around in the clouds with the angels now that he's gone; I just want him back, healthy.  Even though I'm glad he isn't suffering anymore, really, I know that saying that is just a bargaining chip, and the deal we ended up with isn't nearly the one we should have gotten.  I don’t buy the idea that he is in a better place, somewhere that we should be glad that he got to go when he did.  I get that some people believe that and I guess that’s bully for them if that brings them peace.  It’s not ok with me, though, that my dad was taken so early from this Earth, from this family, from this life where he was still meant to be.  It sucks, and even saying that seems like an extreme understatement.

Sorry - but I can't see how something like this does SHIT to help anyone else.

Sometimes when I hear about this or that week or month that’s been designated for some kind of cancer awareness, it pisses me off.  A lot.  Who in THE HELL isn’t AWARE of CANCER??  So, ok, maybe we all need to have our moles checked more often and be reminded that we should wear sunscreen and not smoke, but, other than that, I think we’ve got AWARENESS covered.  What I’ve had to become AWARE of since my dad got sick has been equally as devastating as the fact that there is Cancer in the world.  Here are the fine points of this Awareness and the Darkness: People you love will get sick or hurt and will die. Some people will get cancer and some won’t; some of those who get it will survive and some won’t, and the determining force between the will and won’t in all of this is a crapshoot. Healthy habits, good deeds, karmic credit, income level, family support, positive attitude, level of education, insurance coverage, prayer, bargaining – it is quite likely that none of this will make any difference at all in whether or not a person survives.  Some of the people who get cancer and some who die will be way too young.  Some of the people you care about will suffer, some maybe even a lot.  In some cases when you are hanging onto the end of your rope by the skin of your teeth, trying to cope with illness and grief, some people won’t care. Some won't notice. They will go on about their lives as usual.  At some point in life, each of us will be brought to our knees in grief, and then, even though the layers of sadness and anger will continue to peel away, there will always be a feeling of rawness for which there is no effective salve.

I freaking hate that I am aware of those things now. I hate it when people hear about someone who has gotten very ill or who has passed away and say, “But I just saw her yesterday!”  or “I was just thinking about him this morning!”  As if that is some kind of an insurance policy or a shield that can keep bad things from happening!  I hate that I know that there really is no protection from suffering and death and that I am aware that we are all just one phone call away from our knees.  I detest having the awareness that it’s really inaccurate when someone says a person’s death was “unexpected” or "untimely."  I hate that I know statistics about brain cancer and that I am aware of how different it is from other kinds of cancer, even if those cancers have spread to the brain.  Sometimes I even feel guilty about the people who have gotten a brain cancer diagnosis since my dad did because we weren’t able to help my dad beat those stupid odds; I really thought we would and that we would then be in a position to offer Hope to others in the future.  

I hate that I know what tumor fever and mottling are and what happens to a human body as it starts to shut down, no matter how healthy it was just a short time ago.  I hate that I will always have to wonder if the treatment we chose for Dad was what made him sicker than the cancer was making him at that point.  I hate that I feel like I have to just be grateful for certain things instead of being angry and wanting more.  

As in my dad’s case, for many cancer patients and their families, at some point in their treatment, the big question becomes not “What will result in a cure?” or not even “What treatment will allow for life to continue the longest?” but rather “Which treatment is the least likely to do harm?”  I hate that I know first-hand that sometimes the best option may be no treatment, even though that feels like throwing in the towel.  I hate that I am aware that not even the doctors or the researchers know what the best treatment is for many diseases like cancer and thus they leave treatment decisions to the patient and/or his family.  Really?  That’s like handing someone a loaded weapon and telling them you’re not sure if it will work as intended, end up being useless as it fails to function, misfire, or just explode in their hands randomly, but at the same time telling them that if they don't man-up and use the weapon to try to protect themselves in spite of the risks, they will surely die anyway. I don't think it technically counts as rolling the dice if there isn't an option of not rolling at all.

When I first heard the "NEGU" (Never Ever Give Up)  creed that is going around in cancer circles, it infuriated me because I felt that it was implying that treatment for cancer should never be stopped and that if it was, the patient and/or his family were wimping out.  Lately, though, I am realizing that what happens is that our awareness - our perspective - about what "giving up" is changes as we are being forced to watch our loved one suffer and as we begin to bargain for lack of having the power to do anything else.  We start to see the continuation of aggressive treatment as something bad and start to look at the cessation of such treatment as fighting and as letting go as we prepare for what comes next as being strong.  That isn't right, to have that awareness or to be forced to make ourselves think that way when what we really want to do is ball up in a corner and cry or kick someone's ass.  That type of awareness is like smelling rotten kitchen trash; before you experience it first-hand, you think it sounds horrible, but, once you're actually in the midst of it, you realize it's even worse than you ever thought it could be.

When I look back at the couple of days that my family had to find and choose an oncologist for my dad, while we were trying to take care of him post-brain surgery and while we were reeling from the shock of the news of the diagnosis, part of me knows that we did the best we could do at the time, but part of me wonders why we didn’t find a way to interview more than one doctor for the job.  I wanted an oncologist who was brilliant about more than just cancer cell replication and chemotherapy, one who never failed to answer our questions, one who cited studies and considered and discussed with us all of the possible options.  Of course, I wanted one who was capable of saving my dad, but, failing that, I wanted one who took each of our concerns seriously and saw the urgency in everything that needed to be taken care of, one with enough steely competence and compassion to take care of my dad, even if the treatments available couldn’t save my dad’s life.  

I really thought our guy had all of those qualities, but I guess like a lot of things in life, that is something that cannot really be determined until it’s too late to change course.

I realize the primary objective of an oncologist is to cure cancer, and, then, second to that, to treat it.  But what about after that, what about treating and caring for the whole person?  Or even – best case scenario – caring for the whole family?  Where is that in all of this Cancer shit?

Really none of those things ended up happening in our case, and I am left with such confusion and extreme disappointment in the medical team as a whole, not just because of the outcome, but because of the things that happened or didn’t happen in the process.  My mind sometimes flashes back to the scene from when my mom, my sisters, and I sat down with the oncologist in Dad’s hospital room, with him in a drugged sleep in the bed in the middle of us, and discussed stopping treatment.  I can still picture the doctor, with tears in his eyes and such a genuine look of compassion on his face, as he told us that we were making the right choice to take Dad home on hospice and then that, although he wouldn’t continue to “officially” be Dad’s doctor (a hospice patient is typically transferred over to the service of a physician associated with the hospice agency), he would call the following Monday to check on Dad and on us.  

At the time, I felt like he was totally on our side, and that felt almost as right as the decision to sign on with hospice did to me.  But later, when he didn’t call us to check in, not that Monday, not EVER, I am left to wonder if my impression of him and my memory of the compassionate expression on his face that day were all as inaccurate as my belief that Dad would beat brain cancer were.

And therein lies an example of the darkness that still surrounds me: the haze of the confusion about what really happened, the memories of my family as we clamored around in vain to try to find something that would get Dad better, and, of course, the questions that as far as I can tell will always remain unanswered:  things like  - Why did Dad have almost no symptoms at all until he was so stricken by the cancer and later by the infection in his body? Why didn’t he ever get any better at all, despite the surgery, the rehab stay, and the treatment he endured (and despite what all those “expert” doctors said)? What caused his immunity to drop so low and him to get so sick that he couldn’t recover? Why did he die when the scans showed improvement?  Why did the oncologist not see how he wasn’t getting better?  Why were we only presented with some of the treatment options, beginning with the brain surgery that didn’t help him at all and ending with the offers for treatment plans that were totally unrealistic when he was so sick that he couldn't lift his head from the pillow in his hospital bed? 

And of course, the mainstay: How (why) did he get brain cancer in the first place?

There again is the darkness, that which threatens to pull me downward in the blink of an eye.  There again is the fierce fury that feels so fresh and even more intense than the day my dad died, the rage that makes me want to rip someone's throat out except for the awful awareness that I have that doing so (or doing anything else, for that matter) won't help a damn bit. The only thing that keeps me afloat is something else of which I have also only recently become aware:  I have a secret weapon - the perspective that Dad left us with, the one that helps me keep some faith in the human spirit and that allows me to hope that this grief won’t always hurt this much, the one that allows me at this point and even with all of this baggage to believe that even if it does that I am strong enough to withstand it.

"You will lose someone you can't live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved.  But this is also the good news.  They live forever in your broken heart that doesn't seal back up.  And you come through.  It's like having a broken leg that never heals perfectly - that still hurts when the weather gets cold, but you learn to dance with the limp." ~Anne Lamott