Saturday, July 2, 2011

As a Result

As a result of what my family has been through since my dad was diagnosed with cancer on October 23, I’ve learned that in the face of tragedy people will surprise you.

I’ve been surprised by some of the things not done or not said by certain people while my dad was sick and while my family has been grieving, but I’ve also been surprised by things that were done and said by others.  It’s been the latter that has kept the former from causing even more pain and grief.

As a result of some of these relationships, many of which have changed as much as I have over the past months, I struggle with the question of whether the actions or lack thereof are due to ignorance (not knowing what to say or do), insensitivity (not realizing how badly their support was needed), or indifference (not giving a Hoot, or at least being more interested in other things like having fun than in supporting me or my family), and I also struggle with the question of whether or not it even matters what the cause of lack of support from these people is.

Sometimes a bridge has been burned so badly that it is beyond repair, and what's really surprising about that is that in some cases I don't even have it in me anymore to care that I can't cross the River.

After a few months, it seemed like almost everyone I know assumed my time for grieving had expired and that I was back to living a normal life.  They didn’t see my tears as I lay my head on my pillow at night or hear my one-sided conversations with Dad as I drove to and from work each day.  How could I go back to “normal”?  I don’t even know what that is anymore.

As a result of what happened to Dad, I’ve seen up close that bad things can happen to anyone at anytime.  As a result of this blanket of grief, I have hurt physically and emotionally worse than if someone had stabbed or burned me.  I want something that I cannot get back, ever. 

I’ve learned to speak the language of Tears.  I’ve learned that Shock is a shelter but that it’s not one I want to stand under for too long; it keeps me from feeling my dad’s spirit and makes me do crazy things that don’t help me or anyone else. 

In much the same way it is a surprise to find your car with a flat tire, it has surprised me that some people with whom I’ve discussed so many things in the past have yet to say much or even anything at all to me about my dad’s death or how I have changed because of it. 

As a result of what I've observed, I've learned that no matter how badly your heart is broken, the world doesn't stop for grief.

I've learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.

I’ve realized that I need to figure out how to watch the film from a few rows back so that I can see the whole screen before me.

I’ve learned that grief is a journey, not a destination, and that the only way to get through it is to focus on what’s in the headlights on the road directly ahead.

Thursday, June 30, 2011

Lessons I Learned from My Dad Through Running

From the first day that we found out about Dad’s diagnosis until 75 days later when he went on ahead, my family and I kept detailed logs in spiral notebooks  to record everything involved in his care – grids of medication logs, fervent notes from conversations with doctors, comments he made that we wanted to share with whomever wasn’t there at the time, schedules of who would be with him when. 

One of the many elaborate schedules we kept for Dad during his illness

It helped us to keep things straight during a time when we weren’t always thinking straight, it gave us a place to write down questions and to-do lists, and it was a way for us to communicate with each other when we passed like ships in a harbor.

But Dad thought the logs were funny.  He liked to tell other people about them: “Watch what you say,” he told whoever came into his hospital room, “The court reporter is here.”  A few times he even told us what to write in the notebook, questions he wanted to remember to ask the next time he saw the doctor and things he hoped to do when he got better, a much-abbreviated Bucket List.  Still, he acted like he didn’t really see the value in them; certainly he didn’t get as much use out of them as we did during his illness.

The day after he went on ahead, I was going through some old photos in a box at my parents’ house and came across a set of running logs that he had kept on me many years ago.  In the margins he had written notes that made me think about the many lessons I have learned over the years from him through running, all of which can be translated into important life lessons as well as training and racing tips:

-“No guts, no glory!” (“Don’t expect something for nothing,” he’d say as he prodded me to run up the levee AGAIN in the Mississippi Delta 95 degree weather as part of my training regiment. “It’s good to be lucky, but it’s even better to be prepared!”)

-“Always double-tie your shoes before a race.”  (Be prepared!)

-“Don’t quit just because you get a cramp.” (Even when the going gets tough, stay in the race.  “Keep your eyes to the front and your head in the game” was often his pre-race advice to me.)

-“Know the course and know your competition.” (Pre-pre-race advice!)

-“I know the secret to being a better runner, and it sure isn’t fancy running shoes or gadgets.” (“Well, what is it then?” I asked him when he said this to me when I started training for my first marathon.  “Get your ass out there and run more!” he said and then roared with laughter at his own cleverness.)

-“If you need motivation, find a friend.” (“Running is easier with more than two legs,” he told me more than once, and then he always added, “Do you get what I’m saying? I mean running is more fun with friends.”)

-“When you’re going on a long run, always tuck some TP into your shorts.” (I like to think he meant “Be prepared” which is a good life lesson, but I’m pretty sure he meant this one literally.)

-“Sometimes the best runners have the crappiest running gear.” (Dad’s version of “Don’t judge a book by its cover.”)

-“Keep track of your thoughts in the field.” (Dad sometimes carried a pen with him when he went on a run, and when he had an idea during the run he would – without breaking stride, of course - use the pen to make a note on his hand.  If he didn’t have a pen, he moved his wedding ring from the ring finger of his left hand to that on his right hand as a reminder, a habit that one of my sisters and I got from him and still do now.) 

-“Excuses don’t get you to the finish line.”  (“You can always say it’s ‘too something’ to run, but you’ll be glad you got out there anyway,” he said.)

-“If you are adequately prepared, you won’t have any regrets, no matter what happens in a race.” (If I heard this one from him once, I heard it at least 100 times.)

The last two are my favorites. 

Dad, you were very much “adequately prepared,” and you made it to the finish line in a way that was respectable and admirable.  Thank you for the runs and for the advice; I get what you were saying, and I will remember your wise words.

Running with my dad

Wednesday, June 29, 2011

Shhhh! It's Brain Cancer! (Part Two)

A brain scan of a GBM tumor

Just so I don’t leave anyone hanging after Part 1 of this message, here are the follow-up answers to the questions posed in that post:

*Some famous people who have had Glioblastoma Multiforma (GBM), the type of brain cancer my dad had, are politician Ted Kennedy (survived 15 months after diagnosis), composer George Gershwin (survived 12 months), actress Ethel Merman (10 months), politician Lee Atwater (12 months), Pulitzer Prize winner David Shaw (3 months), CIA Director William J. Casey (5 months), MLB pitcher Tug McGraw (the father of singer Tim McGraw, survived 9 months), and South Carolina Governor Robert McNair (50 days).  Also included in this list are two men who wrote about their personal experiences with GBM: famous author John Gunther, who wrote "Death Be Not Proud" about his teenaged son Johnny who lived with GBM for 15 months after diagnosis, and Ivan Noble, BBC journalist and science writer who published articles about his own GBM diagnosis after which he lived for 2 years.

In addition, many more celebrities have had metastatic brain cancer, which is another type of cancer that has spread from another part of the body to the brain, and lower-grade types of primary brain cancer, both of which are obviously very serious but neither of which is as catastrophic as GBM.  There are eight types of primary malignant brain cancers; each originates in the brain and does not spread outside the central nervous system.  Of these, GBM is the most aggressive and the most deadly.  The median survival rate after a diagnosis of GBM in an adult is twelve months.  A GBM tumor typically doubles in size every 3-4 weeks, and so if even a few cells are left behind after surgery, the tumor can become quite large again in just a few months, if follow-up treatment is not successful.

Dad’s neurosurgeon removed 80% of his tumor.  A scan done 3 weeks later showed that the remaining tumor had already doubled in size, which meant “there was limited benefit of the surgical reduction” (yet another medical term we learned).  In layman’s terms, when Dad’s tumor was discovered, it was already the size of a racquetball.  It was cut down to about the size of a grape, but in only 3 weeks it had grown to the size of a walnut. 
During the course of Dad’s illness, I learned that Hope is a very tricky thing:  one needs JUST ENOUGH to keep going, but TOO MUCH can be every bit as dangerous as not enough. 

When one is slapped in the face with the news of a loved one’s being diagnosed with a catastrophic illness, Hope is like a pair of scissors.  It can be useful or even necessary at times to get the job done, but it’s not something with which one should EVER run.

I’ve said before in this blog that one reason my family was lucky in the face of Dad’s illness was that we all somehow pulled together, taking turns being strong and using our individual knowledge and skills to push things along.  We all also did whatever we had to just to get through each day.

In a kind of foreshadowing to the way I am now using this blog as a tool to process and record, one thing that seemed to help me while Dad was sick was to post news about what was going on for our family and friends to read on Dad’s Care Page.  One of my sisters helped me with the wording of many of the entries, and we spent time almost on a daily basis talking about what to include in each posting, after which I updated the page.  For the first nine weeks of the ten weeks Dad was sick, we chose to view his illness as a challenge instead of a catastrophe.  Running with scissors, I know, but at least we were moving forward instead of standing still in a state of shock.

I did what I could to keep the news in the posts positive and upbeat for four reasons:  because I was sure that at some point Dad would read the entries; because I wanted SO DESPERATELY for there to be a good outcome (“good” being a VERY relative term); because I felt it was likely that Dad would be able to go back to his job in some capacity at some point, even if he was never CURED, and because I wanted to protect Dad from what little I could, to preserve what little dignity for him that I could, and to give him what little I had to offer him.  I didn’t think it out like that at the time we were posting those bulletins; I really didn’t have the energy, time, or even the capacity to analyze things like that at the time.  But, looking back from this vantage point, I can see that’s why the posts were the way they were.

This isn’t to say that the updates weren’t truthful - because they were!  It’s just that certain details were not included, especially things concerning Dad’s memory and reasoning, which somehow seemed so much more private than his physical condition and function did.  It was hard to put into words how at times he seemed like himself but then at other times he didn’t.  His sense of humor, his courage, his determination, and his compassion were in place as usual.  He believed COMPLETELY that he was going to get better, as did we.  Even now as I write about the cognitive changes in him, I feel like I should tell him that I’m sorry for divulging what seems like such a private thing.  I can describe the physical challenges he was having (issues with sensation and strength in his left side, balance, and endurance), but when it comes to talking about the way he needed supervision for safety, constant reminders and reviews of what had happened and what was going to happen, I feel like I am betraying him. 

Only when it became undeniably clear that he wasn’t going to get better did it start to feel appropriate instead of disrespectful to include more of the details about Dad’s condition for public knowledge.  I didn’t want to compromise anyone’s Hope, but I wanted to be as honest on paper as I was able to be with myself in my head and in my heart.  Never did I use the words terminal, end stage, or poor prognosis.  When we brought Dad home on hospice, I vehemently felt that those of us in my immediate family who were caring for him could not and should not have to withstand any criticism or judgment OR EVEN questions or pity for having made the decision to call in hospice.  We didn’t want anyone to see our decision as giving up; rather, we were respecting Dad’s wishes, which he had been very clear about before his diagnosis and while he was sick.  Again, I was trying to protect Dad – and myself and my family – in a situation in which that brand of protection didn’t carry much weight.   We were paving the road, though, as we were starting to be unable to deny or defer what was coming down the pipe.

Acceptance, depression, shock, anger, and so many more emotions came in waves and had many layers for those of us who were close to Dad during that last week.  Mostly we were just trying to spend every minute we could with him, at first to hoard as many more memories as we could squeeze in to the time we knew was so limited and then to try to comfort him and give him all the love, security, and re-assurance we could.  The quiet of the news of Dad’s condition was over, but the quiet of his state had set in, and on January 5, 2011, Dad went on ahead.

Tuesday, June 28, 2011

Here in My Heart

The measure of every other grief
Is held to my own:
Is it longer, heavier, more powerful than mine?
I feel like I'm alone.

Those who have told me that time will heal
I know to be far off-base
I, in fact, don’t want to be healed           
For fear of having memories replaced.

It doesn’t hurt to hear his name
It doesn’t bring him or his death to mind
The thought of him already is always there for me
Aching if it seems he’s being left behind.

As much as I know part of him lives now with me,
I also know that part of me died with him, too.
I’ve lost my umbrella, and I’m not sure how else to weather the storm
Or how to walk down this road anew.

I want to call his phone and hear his voice
Leave him a message and know he’ll reply           
I want to get a scribbled note from him
I want to see the wrinkles at the corners of his eyes.

I want to hear him singing
Making up the words he doesn’t know,
To tell him something I’m dreaming about doing,
And to hear his funny expressions like "Gung-ho."

I want to know that he still sees the good stuff,
The kids happy and doing well as they grow.
His impact, his presence is with us always;
This I want to be sure he knows.

I’m not sure how to carry this pain
That cuts me like a knife.
I really just want to sit and cry,
But I have to go on with life.

I want to tell him thanks
For being my lifelong teacher and fan
And that I’m so impressed and in awe
Of how he went out like a man.

I keep remembering seeing his light
And it seemed like it was fading away
I wanted so badly to go after him
And to beg for him to stay.

But after all he has done for me
It was time for us to part
I had to let him go on ahead
But I’ll always keep him Here in my heart.

Sunday, June 26, 2011

Shhhhh! It's Brain Cancer! (Part One)

The day before Dad had the surgery to confirm the diagnosis and “debulk” the brain tumor, he had a full body scan to rule out the possibility that cancer had originated in another part of his body and then spread to his brain.

When we were told that the scan was clear (meaning he didn’t have cancer except in his brain), we were so happy. The neurosurgeon must have thought we were so na├»ve … and thankfully, at the time, we were: a few days after the surgery, we met with the oncologist and learned that cancer that originates in the brain, which is called “primary brain cancer”, is much more deadly than cancer that has metastasized.

It seemed the more we learned about Dad’s condition, the worse the news was.

The definitive diagnosis of glioblastoma multiforma (GBM), the most aggressive type of primary brain cancer, didn’t knock me to my knees at that point, though; I remained firmly seated in the lap of Denial, sipping on a frozen cocktail of Bargaining and snacking on a side dish of Hope.

How many celebrities can you name who have had brain cancer?

How many can you name who have had breast cancer or another kind?

OK, that’s not entirely fair because brain cancer is relatively rare, but the point is that it’s in a league of its own as compared to other cancers. Brain cancer is like a hybrid of Cancer and a neurological problem like a traumatic brain injury or a stroke. The difference between brain cancer, particularly the most aggressive type which is what my dad had, and the latter is that it’s progressive, and it’s fatal. A person with glioblastoma multiforma (GBM) is not likely to get much better and not at all likely to walk away from it or to survive it long-term.

In our experience, GBM is so different from other types of cancers in that it so often strips the person not only of the ability to fully grasp the implications of their diagnosis but also of the ability to fully participate in treatment and end-of-life decisions.

Here's what we were told in the first week after Dad was diagnosed with brain cancer:

*The type of cancer he had is a Stage IV brain cancer called Glioblastoma Multiforma (GBM).

*It's relatively rare; there are about 12,000 new cases diagnosed in the U.S. each year, which translates to only about 1% of new cases of cancer diagnosed annually in our country.

*It's tricky: GBM is generally found in the cerebral hemispheres of the brain and is capable of very rapid growth. The location is particularly catastrophic because it frequently affects motor skills, cognition, and things that affect personality traits like mood and memory. The location and the shape of the tumor also affect the ability of the surgeon to "get it all" - in fact, most of the time, neurosurgeons end up saying it's too risky to try to remove 100% of the tumor during surgery, which leaves little "seeds" of tumor behind, which can double in size in as little as THREE WEEKS. GBM is “fed” by many blood vessels which multiply rapidly. Cells in this type of cancer change, or mutate, quickly, which adds to the challenge of treating it.

*Less than 10% of newly diagnosed GBM patients survive even five years.

*Treatment depends on where the tumor is located, the type of tumor, a person’s age, and general health of the patient. Unlike many other types of tumors, there is no "cut and dried" treatment option for GBM. Given the "standard" (most researched and recommended) of care for this type of cancer, a pill-form of chemo and radiation, a patient has less than a 5% chance of surviving up to two years.

We didn’t tell Dad that the mass in his head was suspected to be malignant before the surgery because we didn’t believe that it was. We saw Dad as exceptional, and we had proof: he was often mistaken as being at least 10 years younger than he was, he could (and did, on a regular basis) physically out-perform most people half his age, he was in great shape, and he had beaten the odds many times before when he had had other potential medical crises. Personally, until a couple of weeks before Dad died, I was convinced that he would not only survive this terrible disease but that he would beat it hands-down.

It is very difficult to break the news or even to witness the news being broken to an adult who has a life-threatening condition. We had to do this at the same time we struggled with the cold-hard reality of the situation ourselves, and we had to do it repeatedly. Dad initially took the news that he had brain cancer in a way that was so admirable and impressive but that was not surprising to anyone who really knew him: I had always known him to face adversity head-on, and that’s just what he did when he was informed of his diagnosis.

However, though, because of the problems with short-term memory and reasoning that the remaining tumor was causing, Dad forgot part or all of the information pretty often. Looking back, I see now that he likely was drafted into joining Team Denial as well, which also hindered his ability to adequately process the diagnosis. Useful, I suppose, in that it allowed Dad and the rest of us to put one foot in front of the other, but also troublesome because we had to explain what was going on to Dad over and over. And that seemed so much worse than a single session of news-breaking.

Even when Dad couldn’t fully deny the whole “Big C” diagnosis, he didn’t really “get it,” either; for example, once when we were in a waiting room full of people at the oncologist’s office, he said loudly, “I’m just glad I don’t have REAL cancer like some of these people in here!”  He regularly talked about when he could go back to his job as a commodities broker, when he could drive again, and when he would be able to get back into "Ironman-shape," even as he had trouble with basic living skills.  (I'm not sure if Denial is a team or a contagious condition, but, either way, we all had it going on BIG TIME, and Dad was no exception.)

So the Secrecy of Brain Cancer starts as soon as the hint of the diagnosis first comes out. Is it better to tell the patient right away what the diagnosis is likely to be? Is it better to let the doctor tell him? Is it better to wait and make SURE the doctors know what they are talking about, since many doctors see less than one GBM patient per year? When you do tell the patient what the diagnosis is, is it better to tell him the prognosis? Is it better to let him ask what it is and if/when he does, do you tell him the whole truth and nothing but the truth? Is it better to explain (and re-explain, when he forgets or doesn't understand) all of the treatment options, even though you don't he doesn't understand the diagnosis or the prognosis, or is it better to just decide for him? Is it better to give him options, and, if so , how many and which ones? Or is it better to just tell him you know he wants to fight like hell and then push forward because you are convinced that's what he would decide if he could? How much hope do you give him - is it better to tell him you're sure that he will get to go back to work, to go back to doing the things he loves, TO LIVE?

We didn't know the answers and we still don't. The only things we knew for sure at the time were these: NONE of our options were good, and we were in this together.

To be continued ... 
                                                     CLICK HERE TO GO TO PART 2