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/"

So Much For No Sequestration

I didn't know what the word "sequestration" meant until recently; in case you don't know, it's a term that refers to the making of general, broad-sweeping cuts in government spending due to budget shortfall.  

During the final 2012 Presidential debate, Obama was asked about the budget sequester, and he said, "It will not happen."

Unfortunately, though, it is happening.  Funding for categories of things in the budget are being cut and/or put on hold indefinitely, including Head Start education programs, food inspection, and medical research.  Instead of looking at items in the budget individually to see where cuts can be made without causing long-term, wide-spread harm, with a sequestration, entire categories are being stricken from the budget.  To me, making cuts in this way seems haphazard, short-sighted, and scary.  Maybe careless, lazy, and desperate too.  Actually, there is a one-word descriptor to describe the "plan" that was used by columnist Robert McCartney in an article today in the Washington Post that I think is spot-on:  Dumb.  

               CLICK HERE TO READ THE ARTICLE

Some of the areas in which these crazy cuts are projected to be made seem like a gamble; maybe, just maybe, things will turn out ok despite the loss of funding.  One area, though, in which cutting support in such an extreme fashion is literally a matter of life and death is medical research.  As the article above says, $1.6 billion is slated to be cut from the budget of the National Institutes of Health, which is already underfunded.  "NIH grants pay for most of the basic research in universities and laboratories across the country, [which] has led to practically every major U.S. medical breakthrough since World War II," McCartney reports.  

I read a lot about research in the areas of cancer and other diseases, and lately more and more often I've been seeing information about how we are so close to figuring out a cure for many of them.  Not just a treatment - a cure!  Obviously, without funding, this research will be put on hold or even shut down, and that swings the making of these cuts over into the category of being downright immoral, in my opinion.  

I wonder if the members of Congress and the President actually recognize what will happen; I wonder if they have thought about the implications of the cessation of medical research, either in broad terms or in a personal sense.  I doubt any of them have lived their lives without being touched in some way by cancer; maybe they should sit and talk for awhile to someone they know who is fighting or who has fought it, or maybe they should look at a photo of someone they've known personally who has lost their life to the disease, just to be sure they realize what they are doing with such over-zealous use of their red pens.

I realize it's challenging to figure out where spending cuts should occur when there is a budget deficit, but I'm pretty sure nobody has ever told the members of Congress or the President that their jobs would be carefree or easy.  There are difficult decisions ahead for them to make, for sure, but trying to solve the problems by simply indiscriminately slashing entire categories is just plain - and here's one more word to describe the whole thing - cowardly - and they should be ashamed.

Struggling

Since my dad went on ahead almost two years ago and especially over the past year, I have been struggling with the fact that the way I see him in my mind is as he was when he was sick, but today when I happened upon a picture of myself helping him walk using his walker I was struck by the fact that he looked even more frail than I remembered.  So now I’m troubled by the fact that apparently I don’t clearly see him as he was well or as he was sick, although maybe the latter is for the better.  

It was excruciating to watch Dad struggle and to witness the physical and psychological effects of his illness as it progressed, especially because I felt that we had all but been promised that there would be improvement after he had gotten the "Magic Bullet drug," Avastin. My heart broke for Dad as I watched him struggle to grasp the severity of his illness, time and time again.  As long as I live, I will never forget the look in his eyes when he was struggling to get around on his walker one day not long after he got out of rehab and he stopped for a minute, obviously deep in thought.  I was holding onto the waistband at the back of his pants, and he looked back at me with tears suddenly in his eyes and said, "Am I handicapped?"  

"No, Dad!" I responded. "You've been through a lot, and you're having to work on some things, but you're going to get better."  I was so sure, and, from my perspective, so was everyone else around us, maybe not that he would be cured but definitely that his physical skills would improve with effort and with time.

But that didn't happen. He didn't get better; in fact, he got worse, and little by little his independence and then his life slipped away.  Or maybe I should say they were stolen, or ripped away from us, because saying they slipped away implies that we weren't holding on and fighting tooth and nail every step of the way, which we were, Dad included.

I don't think he realized that the end was very near for him those last couple of weeks; likely, the invaders in his brain - the cancer, the trauma from the seizure and the surgery, the chemicals in his body that collected as his organs were shutting down and could no longer filter out the toxins, and the array of medicines he was taking - clouded his knowledge of his rapidly worsening condition. I hope so - Dad didn’t deserve to be given a death sentence.  It was heartbreaking enough that the rest of us had to know what was coming down the pipe all too soon.  

Living Strong

We've all heard the expression "Live Strong," especially in the context of fighting cancer. 

Since my dad's diagnosis, though, I've come to view the meaning of this command in a different light, and I see now that it’s not just for the people who have been diagnosed with cancer, but also for those who are caring for them - and even beyond that to those who are left behind to grieve.

By all accounts, my dad "lived strong" during the ten weeks he was battling for his life against the brutal brain cancer that took first his independence and shortly thereafter his life.  He literally fought with all his might until his very last breath.  

I've heard it said that people die as they have lived, and, in regards to being courageous and strong, definitely that was true for my dad.  And, as for my family, I think we've "lived strong" too, working as a team throughout his illness and since then.

In many ways, it's been the "since then" part of this whole thing that I've found to be much harder, but, to honor my dad and the rest of my family, "living strong" has been and continues to be my goal.  

Sometimes I worry that I'm not being strong enough now, though.  

When I was a teenager, I had a t-shirt that had big lettering at the top of it on the front that said "Trackster's Excuse Shirt." Underneath that were listed dozens of excuses that people often used not to run on any given day, things like, "I'm sore from yesterday's workout," "I think I'm coming down with a cold," "I had to work late," and even "It's too cold outside" and "It's too hot outside."  I loved that shirt, and I wore it often.  Dad and I used to make up additional excuses that we thought should also have been listed on the shirt and laugh; there were many days when I didn't especially feel like running but I did it anyway because the shirt helped me to realize that whatever excuse I had was just that - an excuse.  I remember the day I got braces on my teeth; when Dad got home from work that afternoon after I'd gotten home from the orthodontist, he told me to get my running gear on, and I protested, claiming my teeth were too sore to run.  "Oh, really?" Dad asked with a smile on his face. "Should we put that on the excuse shirt too?" Of course, I laughed and then suited up so we could head out the door to run as planned.

Lately I've been thinking that maybe I need a shirt like that, one that lists all the reasons excuses I so easily come up with these days for not running (or for anything else, for that matter): "I didn't sleep well last night;" "I miss my dad too much;" "I'm grieving;" "I'm too busy at work," etc.  

There's no good reason, only endless excuses, and yet I still can't seem to find the drive to do it anymore.  A few years ago my dad gave me a big magnet to put on the back of my car that says "Runner Girl."  I took it off my car more than a year ago; it just felt so disingenuous, and seeing it every time I walked around to the back of my car made me sad.  Sad that I wasn't running, sad that my dad couldn't be.

That's just one of the things that I used to do that I don't anymore, one of the changes that I don't know the reason behind and that I don't like.  I'm honestly not sure if I should grit my teeth and try harder to live strong or if I should just look at it as a temporary thing that I have to go through and go with it for now; I know that some of this is just part of the process - and that some of it is out of my control.

From the time when I was about 12 years old, I always volunteered to pack the car the night before we went on a family road trip.  I liked being the one who knew where everything we might need during the course of the trip was in the car, from a deck of cards to snacks to a box of tissues and a map. 

I think one of the hardest things about dealing with a terminal diagnosis and the grief after the death of a loved one is having the realization that there is no control to be had and that there is no getting prepared for some things in life.  In essence, there is no packing the car the night before in Real Life.

In grief, you spend a lot of time focusing on, well, you.  Grief tends to make us shut out other things at times, not out of self-centeredness but out of necessity.   It is a rough road, one riddled with obstacles, but one with learning and growing and - with time and effort and luck instead of excuses - living strong, to the best of our ability.  We just have to get through it, in our own way.

The Chemo Room: What's Going On With THAT?

Here's something I've been wondering about lately ...

Why are cancer patients forced to get their treatment in a crowded room?  I don't know of any other diagnosis that results in patients being forced to sit in a room together while each of them, one by one, gets stuck with a needle and then filled with toxins, all while they sit there in a circle, like they are hanging out around a campfire getting ready to sing Kumbaya and roast marshmallows.

Is it an attempt to mask the fact that each person is really fighting alone, no matter how much we love them and no matter how much we support them and want (need) them to get better, no matter how much we wish we could take away their pain or how hard we would fight to take their place?  

Is it supposed to be like a Cancer Club, with their cushy recliners and (if you're really "lucky,") flat screen TV's?  Because it's really not. Or at least it wasn't when I was in there with my dad.  For us, it was an environment of extreme stress, pain, and fear, tempered with just a little bit of hope and the belief that what was happening would be worth it.  But it didn't take having other Cancer patients in the room with us for that to be true. In the first chemo room we were in, the one at Duke, there were curtains between the recliners.  (Prior to then I'd read that only the newbies use them, but I didn't care - I pulled ours closed anyway so Dad would have some semblance of privacy.)  I'd heard that after the first few visits in the Chemo Room most patients prefer to keep the curtains open and chat with each other.  That sounds great.  And maybe for some people it is.  But I didn't see it, and I really can't imagine it seeming like anything other than an invasion privacy.  

For what I think were purely logistical reasons, our second visit to the Chemo Room was far worse than the first one. Neither one, of course, was a walk in the park for Dad, and, as you know if you've read our Behind The Scene Story, neither one ended up being worthwhile.  Both times, though, I remember feeling the breach of confidentiality and the urgent need for privacy and peace and comfort for Dad, all of which were not to be found in that type of a setting for him.

Is it an attempt on the part of the medical staff to keep people from showing their emotions?  We all know that peer pressure can be a very powerful thing.  I know there are lots of times in my life when I was hurt or scared and I wanted to cry but didn't because other people were around.  That just doesn't seem very nice, though, does it - using someone's pride against them, humiliating them into shutting down their fear, their pain, their anxiety, when they're battling for their lives?

Is it a cold hard dose of reality (like HEY YOU!  YOU REALLY DO HAVE REAL CANCER, and soon you'll be pale, bald, and sick-looking just like the other people in here!)?  OR, to shame them into not crying when they have to be stuck for the IV, when the chemo burns their veins, when terror hits them in the gut harder than any boxer ever could.  

I guess the most likely reason, though, and one that's in some way actually even sadder than those reason, is that it's a way to save money.  

Just one more thing about stupid Cancer that I don't understand.