9/11

Each year, Sept. 11 is a day of mourning for our country.  We watch tributes on TV, post about it on Facebook, and talk about where we were and what we were doing on that fateful day in history, and, through all of these things, the message is clear:  We will not forget.

September 11 is a date on which we all recognize and remember how quickly things can change, how we cannot go back in time, how grief may change over time but never totally disappears, and how a loss can change who we are forever.  It’s moving to see that many people still fly an American flag in front of their house and to see people in a crowd place their hands over their hearts as they recite the Pledge of Allegiance and sing the National Anthem.   Life goes on, but so does the respect for and memory of the many who were lost on 9/11 and as a result of the events of that day.

As much as we work to preserve the memory of those lives, though, I think we should also be sure to work to hold onto the memories of any loved ones in our lives who have gone on ahead.  No one says that our nation should be “getting over” what happened on 9/11; in fact, we are sure to take time to honor the day and the individuals each year.  The focus isn’t on forgetting or on being strong; it’s on remembering and drawing strength from community and honor and love.

Thinking about all of that makes me think about the way, in our society, people are so often rushed through the grief process when a loved one dies. We are expected to go right back to work, and most people around us seem uncomfortable talking about our losses or our grief.  We are told to “be strong” and “hang in there.”  I appreciate the sentiment and the support that goes along with this type of message, but I wonder if this is the wrong idea.  Like the tragic things that occurred on 9/11, why don’t we take time on a regular basis to honor the individual and work hard to remember them, even if that means crying, having to lean on each other’s shoulders, and letting ourselves show our hurt?  Why don’t people usually talk about or even let us talk about what an impact our loved one had and how much we miss then?  Why are we encouraged to “stay busy,” as if distraction of our daily routines will make us forget, when forgetting is what we are most afraid of at this point in time? 

To me, grief after the loss of a loved one is like having a tooth fall out.  You can chew, eat, and talk, and you have other teeth, but your tongue keeps going back to that same empty place in your gum.  You know other people notice, and you certainly can’t help but think about the loss – it’s raw, it hurts, and there’s a gaping hole there!  There’s NO WAY you are going to forget!!

When I think about the Stages of Grief, I know all about the denial, bargaining, anger, depression, and acceptance.  But what about the other emotions that come as a result of the loss – like confusion, desperation, and fear?  Those are every bit as present and can be so overwhelming it’s hard to breathe sometimes. 

Like the tributes that serve to preserve the memories and the impact of those lost on and as a result of 9/11, I think we need to recognize grief and loss and sadness resulting from any losses.  I think we need to permit ourselves to feel it instead of rushing through it, to let the blanket of our memories shield us from some of the pain instead of pushing onward, to allow the tears and sometimes the laughter too instead of stuffing it all inside and responding to the call to “be strong.” 

I think it takes strength to process, to sit with our grief, to remember.  Like the saying goes, “Death leaves a heartache no one can heal; love leaves a memory no one can steal.”

The Sandman Has Left the Building

 

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

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

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

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

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

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

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

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

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

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

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

Once More

You sat me on the rocking horse

And kneeled on the floor to the side.

I pretended I was a jockey in a race

And had a grin on my face so wide.

It’s ok, Dad, I said,

Now you can let go.
I’m ready, and you’ve taught me

Just what I need to know.

There in the front yard
Sitting proudly on my bike
A young girl’s first taste
Of what freedom’s really like

You ran along beside me
With one hand on the seat
I smiled and pedaled harder
And headed for the street.

It’s ok, Dad, I said,
Now you can let go.
I’m ready, and you’ve taught me
Just what I need to know. 

Walking behind you in the snow

I put my feet where yours had been

You reached back with your hand

To offer me your help

And to keep me on my feet

But I knew then that I could stand.

It’s ok, Dad, I said,

Now you can let go.
I’m ready, and you’ve taught me

Just what I need to know.

Almost to the aisle,
On my wedding day,
You looked at me and said,

I feel like there’s something I should say.

When the preacher asks
Who gives this woman
I know what to do
I’ll say the words
And then let go
But I’ll always be here for you.

It’s ok, Dad, I said,

Now you can let go.
I’m ready and you’ve taught me

Just what I need to know.

It was so hard to see
A man so strong
So fragile in the bed.
I lay down beside him
And put my head on his chest
And, once more, I said:

It’s ok, Dad, I said,

Now you can let go.
I’m ready and you’ve taught me

Just what I need to know.