Cancer Myths - and Grief and Anger

I remember studying about the stages of grief when I was in college over two decades ago – and I remember reading almost incessantly about grief just after my dad died three years ago.  There is so much that I didn’t know about grief or grieving before I was thrust into it myself; even while I was reading the words written by the “experts” and professionals in the field, I realized that what had been put down on those pages was just the tip of the iceberg, understated and addressed only in general terms.

Some people think the information that’s out there about the five stages of grief is baseless.  Others seem to think that the stages exist but that the grief process isn’t nearly as clear-cut or as linear as they suggest.  I remember the grief counselor that led the grief support group I attended showing a picture of a graphic representation of the grief process: in that rendition, it looked more like a tornado, spiraling and circling back and forth, which seemed much more accurate to me. 

For me, anger and sadness are two of the emotions associated with grief that keep resurfacing the most often. Sadness, mainly because I miss my dad so much that my heart hurts, and anger, for that same reason and so many other reasons too.  

I’ve written many times about my feelings of anger associated with my dad’s cancer diagnosis and death.  I’ve always thought that I had a long fuse – slow to anger, fairly quick to try to put out the fire whenever possible.  But in the me that I am now, I’m not sure that’s the case – or if it ever will be again.  There are certain things now that launch me into white-hot fury in the blink of an eye, sometimes for reasons that I can’t identify, explain, or understand.  Seeing information like this is one of those things:

“Big Hospital Finally Telling the Truth About Cancer,Johns Hopkins”

I’ve seen this and similar bullshit information posted on Facebook and other sites on the Internet at an increasing rate lately.  It isn’t those who re-post or share the info who make me so angry; it’s the idiots people who write the articles, posing as authorities on a subject about which they obviously enjoy spewing shit like the septic tank hose coming out of an RV of frat boys after a weekend at a music festival fabricating and embellishing for reasons that are lost on me. 

I'm pretty sure he said this in about 400 B.C. and that he didn't mean it literally, because he also said this:

For the record, Johns Hopkins did not publish or endorse the article in the link above, and neither did any other medical institution or research body.  The assholes authors have apparently hooked many readers by weaving some true information in with the idiotic crap exaggerations and falsehoods – and it doesn’t hurt their efforts that the bottom line is that we as a society want to believe that we have control over something as horrible as cancer and death.  As is stated on the Johns Hopkins website, “the gist of this [unscientifically based article full of misinformation]… is that cancer therapies of surgery, chemotherapy, and radiation therapy do not work against the disease and people should instead choose a variety of dietary strategies.”

OBVIOUSLY it’s probably a better idea for health reasons to eat a balanced diet and to exercise than it is to not do those things.  OBVIOUSLY there are cases in which traditional standards of care are not effective against cancer and in which sometimes a supplemental or alternative treatment is advisable when more research-based interventions have failed.  OBVIOUSLY it makes sense to adopt habits that boost one’s immune system.  However … cancer isn’t caused by nutritional deficiencies, nor can it be “corrected” (even just that terminology makes me mad) or avoided by taking supplements, breathing deeply, exercising, or eating foods like blueberries.  Surgery does not cause cancer to spread – and spreading that kind of information could absolutely be harmful if people believe it. 

I remember being told by more than one person (who was well-meaning, I GUESS) while my dad was undergoing treatment for brain cancer that we should keep him from ingesting any sugar because “cancer feeds on sugar.” 

REALLY?  Is that all it would have taken to save him?  ("Ever heard of the Krebs cycle, idiot?" is what I wanted to say in response.  Somehow I held back - but maybe I shouldn't have.)

Of all the ridiculous bullshit fiction out there about causes/treatments/cures for cancer, probably the one that offends me the most is this one: “Cancer is a disease of the mind, body, and spirit."  Some of the most spiritually fulfilled, healthy living, intelligent people I’ve ever known have been diagnosed with cancer.  Both before and after their diagnoses, these people did not have diseased minds or spirits - and it's beyond nonsensical to imply otherwise.

Perhaps worse than the false hope this misinformation seems to seek to provide is the implication that the power to avoid or cure all types of cancers is within each of us, which is an absolute untruth.  I remember the guilt and the pain in my dad's eyes when he asked if he had done something to cause himself to get cancer, and it almost kills me.  A person who is diagnosed with cancer does not need to be made to feel guilty - or contaminated or in need of spiritual "correction" - on top of everything else they are having to cope with.  

I only wish that diet and "spirit" alone could prevent or cure cancer.  If that were true, I wouldn't know what I know today about grief, because my dad would still be here on this earth, happy and healthy.

If you come across one of the articles on the Internet perpetuating misinformation about cancer, I urge you to post a rebuttal, even if it’s just a link to one of these scientifically-based websites:

The Cancer Update is a Hoax (Johns Hopkins)

Don't Believe the Hype: 10 Persistent Cancer Myths Debunked

Let's Beat Cancer Sooner - New Treatment Info

Knock, Knock!

On the next to the last day that my dad was on this Earth, I promised him that I would take care of my mom and my grandmother and my siblings, and I told him that we were so thankful to have had him to pull all of us together as a family.  And then, as I knew I needed to say for him, after all he had done for me all of my life, I said to him, "You can go. But you have to come back to me!" Dad, who had lain still for more than a day except for the slow rise and fall of his chest from rhythmic breathing, started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I realized that he had heard me, and I was ashamed of the selfishness behind what I knew he thought I was asking him to do.  "Oh, Dad," I cried. "I know your body can't do it anymore. I know you are doing everything you can to stay here with us, but it's ok if you can't. You've finished the race: you've done everything you needed to do, and we will be ok."  He immediately settled down again, and I just sat there beside him, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear and be upset by that too.  I wanted to tell him that what I'd meant was that I hoped he could try to send me a sign, after he'd gone on ahead, and that he could come and be with me and the rest of the family later, in spirit.  I didn't tell him that, though, because I didn't want to risk causing him any more distress, and so I told myself that he would do it anyway, without having been asked, if he could find a way.

There are so many times these days that I feel him right here with me, and my sisters and my mom feel the same thing at times, too.  Sometimes I feel his spirit when I look up into the sky and see big white clouds contrasted against a blue sky - or when I see a beautiful sunset or sunrise.  Sometimes it's when I see or hear or even smell something that reminds me of him in such a strong way that it's impossible to ignore or overlook.  And sometimes the thing that makes me feel a connection with my dad is seeing a redbird, something that often happens at times when I need comfort or encouragement or when I just need something to make me smile and think more positively.  

My sister Nancy was the one who first commented that she had been noticing a redbird around her house and in other locations on a frequent basis.  After she said that, I started thinking about it and realized that I'd seen one around more often that I usually did, too. Other people in the family began to comment that they had seen redbirds in certain locations at different times, and over time it has evolved as a symbol of comfort and positivity whenever any of us sees a redbird.  

I sometimes think that Dad's spirit takes turns spending time now with each person he loved and watched over while he was here in this world.  If one or more of us are on the road, I think he's probably traveling along with us; if one of us is having a particularly difficult day, he's likely there to comfort us, often in redbird form.  

Yesterday morning, not long after I'd gotten to work, I checked my email and saw one in my Inbox from my sister Nancy's friend Suzanne, who, along with her family, has been having to make some very difficult decisions and plans as her dad enters into hospice care.  In the email, which Suzanne had sent to me and both of my sisters, she told us about something that had happened that morning as she was getting ready for the day.  Suzanne knew my dad and has heard us talk about the significance that redbirds have to us, and she has given me permission to share her words and a that photo she took:

I was getting ready in my dad's bathroom for a meeting at the hospice home. I was thinking about you girls and what you went through and how tough this all is. When I hear one knock at the window.  I think it's something to do with the storm. 

Knock again.  So I look, and this determined cardinal is there.  Going back and forth on the window.  Making sure I see him.  He only delivers one knock at a time .... but they are forceful.

Notice me!  I run to get my iPad to get the photo and capture the moment.  He knocks while I run away.  I take the photo and return to getting ready.  KNOCK.  

I turn around and say out loud, "Yes, I see you. And I know everything will be ok."

He knocks one last time and then is gone.  

And I have chills and an unbelievable sense of peace at the road we are about to travel.//

~Suzanne

Here is the photo she took - the redbird is in the bottom right corner of the window, looking in at her.

Daughtering - Part 1 of the Behind the Scenes Story

The term parenting is technically defined as the act of being a mother or father to a child; it means to take care of the person or people to whom you serve as the parent.

So why isn’t there a parallel term for taking care of one’s parent – sonning, or, in my case, daughtering?

The way I can daughter my dad now is by telling his story.  Not just the one from the ten weeks when he was sick, but his whole story, or at least what I know of it. 

During the time my dad was sick, I posted updates regularly on CarePages for friends and family members to keep up with what was going on with Dad.   As I said here, for the first nine weeks after Dad was diagnosed with cancer, we chose to view his illness as a challenge instead of a catastrophe. The CarePages updates focused on what was going right and on the Hope for which we were so very desperate.   But there was lots going on behind the scenes and on the sidelines besides what was posted then, and I feel like this may be the time to begin to tell that part of the story.

This is a sad story, to be sure, but it is also one of Hope and Spirit.  It’s about tenacity and courage and toughness, not just tragedy.  It’s about Love and, of course, Perspective.  It’s about what we learned, not just about cancer but about my dad, about each other, and about ourselves.  It’s about how cancer sucks – it really, really SUCKS! – but WAY more than that, it’s about the strength of a man who wants to protect his family and of a family that wants to protect that man.

 On October 23, 2010, my 66 year-old dad was out on an eight-mile run.  About halfway through the run, he became disoriented.  He stopped at a traffic light but was unsure of which way to go to get home from there.   Fast-forward through a helpful couple who noticed Dad’s distress and called an ambulance, to a transport to a small hospital where a “mass” was detected during an emergency CT scan in his brain, and then to another ambulance ride to a large hospital that was equipped with a Neuro-ICU.   During that flurry of activity, our lives changed forever, and we didn’t even know it was happening. 

My mom was out of town, but luckily her two sisters were contacted and were nearby, and they raced to the hospital to be with Dad while Mom scrambled over the next few hours to get there.  When Dad arrived at the second hospital, he was fast-tracked for an MRI.  Once inside the MRI tube, Dad had an extended grand mal seizure.  The medical team got him out of the tube and performed CPR for several minutes before Dad was intubated and hooked up to a ventilator.  He was transported to the Neuro-ICU, which is where he was when my mom and my youngest sister arrived.  He was sedated and stayed hooked up to lots of IV’s, monitors, and machines overnight, and they stayed by his side, in shock, watching and waiting, a rough beginning of the uphill battle to come.

I think a lot about what went on inside that MRI tube that day.  I’m not sure why; I feel like thinking about that is something I should be moving past by now in the grief process.  But it was such a turning point for Dad, and for all of us who love him, like a Time Machine of sorts.  He went in looking like, acting like, and living like a person many years younger than he was, with a little numbness and confusion, and came out decades older, with a malignant brain tumor and many problems with motor skills, sensation, visual-perception, and memory and reasoning.  On one side of the tube he was a competitive athlete, working full-time, traveling and enjoying his life; on the other side he needed assistance to walk and was unable to perform the tasks necessary to work, drive a car, or live independently. 

Maybe those deficits were already bubbling at the surface and Cancer was like a bandit in the night that just uncovered them all at the same time.  Maybe the changes weren’t as defined as I remember them being at that point in time; perhaps they came in a few days later when he had brain surgery or over the upcoming weeks when the tumor was continuing to grow.  From my perspective, it just seems like a watershed moment, a time when we learned that a hurricane was coming but we couldn’t evacuate, a time when the future was being written, a time when things began to spin out of control, a time when Daughtering took on a whole new meaning.

Next ... Part 2, I Don't Know What's Happening

The Spirit – Not the Spirit of Competition

I’ve been thinking a lot about competitiveness and its place in my life lately.

Dad was very competitive, unless it was at the expense of someone else.  He always set goals for himself for running, whether it was to be among the top finishers, to run the race in a certain time, or to complete a race that was unlike one he had done before, like an ultra-marathon. 

Even with an objective in mind, though, Dad always tried to help other people who were also competing.  He often cheered people on in the middle of a race while he was running.  He always appreciated the spirit of competition and admired people who overcame adversity and challenges to rise to the top, especially when their success wasn’t expected.  On more than one occasion, Dad won a trophy or a medal in a race and then gave it to someone else who had competed in the race but who hadn’t won, often a child who had finished a race for the first time ever.

When I was a teenager, Dad drove a couple of guys from my high school and me to a state park in Mississippi to compete in a small-town road race.  We left early on a Saturday morning, and, as we drove the last mile or so to the starting line, we saw a teenaged boy walking along the side of the road in basketball shorts, walking barefooted and carrying spiked track shoes.  The guys in the car and I laughed when we passed the boy because he seemed so poorly prepared for a race that was about to be run on a paved road.  Dad didn’t laugh; he said, “You never know who’ll get the last laugh.”  We found out how true that was after the race when we found out that the boy had finished in second place overall, running on Dad’s heels with his spikes clicking on the pavement for the entire 5-mile race.  

The last race that he and I participated in together was in May of 2010 and was a Muddy Buddy event in which teams of two had to tag-team over a 7 mile course, taking turns on foot and on a mountain bike.  Teams were put into age divisions according to the combined ages of the two teammates; Dad and I were in the “Over 105 Years Old” age division!  Many teams had dressed in costumes, some of which were quite elaborate.  When everyone lined up at the starting line, I told Dad that we if we ever did another race like this, we should plan to wear something better than the matching t-shirts we had on.  He said, “I think it’d be better just to train more than to hassle with getting costumes.  Today I mostly just don’t want to get beaten by someone who is running in a tutu.”

In this race, Dad started out first on the bike.  At the one-mile mark, he parked the bike and set out on foot.  I started among the other first-leg runners, several minutes behind the first-leg bikers, and ran to the one-mile point and then hopped on the bike.  We continued to leap-frog like that over the rest of the course.  At one point, I was running and heard footsteps coming up behind me.  I turned around and saw Dad running (he was supposed to be biking that leg since I was running it), carrying our bike and another bike too.  

“What happened?” I asked him.  He said that a girl on the course had had a flat tire, and so he offered to carry her bike to the next check-point so that someone there could get started on fixing the tire while she completed that part of the race.  He added, “Don’t worry though, I’ll make sure we still don’t get beaten by anyone wearing a tutu!”

I know in my head that grief and loss are not a competition, but I sometimes cannot help myself from thinking about his death as being more tragic, unfair, shocking, etc. etc. than some other people who were his age or older, who were in poor health because they didn’t take care of themselves, or other illogical ranking factors.  It doesn’t make sense to compare, I know.  It’s hard for me to listen to others’ stories of grief or loss without adding my personal experience or thoughts or advice, but I know I have no idea what I am talking about.  Everyone thinks his or her story is the hardest and most unique.  I guess it isn’t a competition when your heart is broken.  It’s not more or less broken; it’s just broken.  In other words, no heart wears a tutu.