Thursday, July 21, 2016

Anticipatory Grief

One of the things that I have been experiencing over the past 33 months is this thing called grief.  "But he's not dead yet!"  "Live in the moment!" "Make memories!" ...these have all been said to me at one time or another by well meaning friends or clergy.  Some days it seems like the only people who truly get it are my fellow terminal cancer caregiver warriors, and there are none of those who are not in my online life.

Anticipatory grief is the grief a family member experiences when their loved one has a terminal diagnosis.  It is real, it is difficult, and it comes with most of the same hallmarks and symptoms of "regular" grief, but without the cultural awareness. 

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression.  These complicated emotions are often coupled with the exhaustion that comes with being a caregiver  or the stress of being left alone when someone goes to war or is battling addiction.  We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread.  More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.
more here:  http://www.whatsyourgrief.com/anticipatory-grief/

It is true that my husband is not dead yet.  But it is also true that he has much much less energy now.  He is sick in body.  What this means is that our lives have gotten smaller.  We can't go and do.  There simply is no energy.  For our wedding anniversary we did nothing, because he didn't feel like it.  We made up for it later, but it was still a hard hard day.  I wanted to "suck the marrow".  What if this is our last anniversary together?  It didn't matter.  He didn't want to.  So...grief.

There's also a myth that if one has a terminal illness, it's time to "live like you are dying" which supposedly involves lots of expensive vacations, skydiving, climbing the Rockies and other laughable activities.  The reality is that he's blessed and lucky to still be able to sit in a chair and work all day.  Treatment is hard core and takes a toll.  But aggressive brain cancer kills quickly and one does what one must.  The reality is that any shred of extra energy will be spent shuffling doctor bills, insurance companies and the family budget.  High adventure become a stroll in the local park.  And even without treatment, cancer is exhausting. Mothers, remember that first trimester of pregnancy, when there was rapid cell growth going on in your womb?  Yeah...that's what cancer does, too.  Rapid cell growth is draining. 

So the change in life is another thing that gets grieved.  I miss the "before".  Not to mention the loss of dreams.  Suddenly, with a terminal cancer diagnosis, spouses are thrust upon temporarily diverging paths.  He is moving towards death.  I am moving towards widowhood.  We know in the end we will be reunited, but the upcoming separation looms large, and sometimes makes conversation difficult.  Gone are dreams and plans for old age. We learn to live in today, because truly today is all one has. 

Truly. 

Trite phrases like "we are all terminal", or "my husband could be hit by a car on his way to work" are so very dismissive of the reality of living with a terminal diagnosis.  Most people, while acknowledging that possibility of sudden, unexpected death, don't dwell on it, and don't anticipate it.  It is statistically a very low possibility.  The chance of death with a GBM diagnosis, on the other hand is 100%...when a long term survivor is considered someone who makes it to the three year mark, that is a dire diagnosis.  I read somewhere that among medical professionals, GBM is called the Terminator. It is a death sentence.  Perspective. 

Part of anticipatory grief is talking about it.  At least for me.  So, sometimes I make everyone uncomfortable by saying something like "After Wes dies..." or "When I am widowed...".  People literally back away or squirm.  But I have to talk about it, I have to think about it, I have to plan for it and I must embrace this reality.  It doesn't mean that I WISH him dead, or that I am looking forward to his death.  I am not. 

I am NOT looking forward to him losing more of his speech.  I am not looking forward to him sleeping most of the day and night.  I am not looking forward to diapering him and spoon feeding him, and him possibly being paralyzed on one side of his body.  I am not looking forward to my husband's death.  I am not looking forward to falling asleep alone.  I am not looking forward to being the one to pay the bills.  I am not looking forward to being a widow on social security.  I am not looking forward to losing my health insurance. 

So what does it look like for me right now?  Random crying jags, being in a fog, anxiety...so much anxiety...difficulty making decisions, panic attacks, gaining 40 pounds (I'm losing those pounds again now because of very deliberate work and effort), and feeling stuck (which I am learning is an anxiety symptom). All of this is happening at a rather hormonal age, too.  So, at home around my poor family, I am a bit loonytoons.

But I have to face it, this infinite sadness.  And so I do. 

Monday, July 18, 2016

Cancer Update: God is Always Good

We just got back from Wes' doctor appointment.  The MRI report was not all good this time.  The area around where the original tumor was removed was lit up, and one spot in particular was a big bright blob.  Unfortunately, it is difficult to know what it is.  The doctor presented Wes with three choices:  1. Surgery again. The surgeon is willing and able. 2. A month long course of steroids followed by another MRI to determine if this is true progression (tumor regrowth) or pseudo-progression due to swelling and inflammation.  If the steroids remove the lit up spots, we know it was just inflammation and swelling.  Of course, the doctor said, it could be a bit of each.  Option 3. Avastin...which is a type of last ditch chemo when all else has failed. 

Wes decided on option number 2, the conservative route.  He will take the steroids, have another MRI in a month and we will know more precisely what this is.  If it is growth, then surgery and/or avastin and/or the Optune device are treatment possibilities. 

And that is where we are at. 

The kids are trying to stay cool about it. I am trying to stay cool about it, too.  Meanwhile, I am going to make Wes lots of sandwiches and buy him ice cream and pamper him as much as possible. 

He is still working.  His speech has gotten slower this past week or so, and he's been having more fatigue...but so far no seizures, headaches, tremors or paralysis...to put things in perspective. 

God is always Good.

A Trip to Holy Dormitian Monastery

I went to Holy Dormitian Monastery this weekend.  My oldest daughter, Bethany, wanted to go and I accompanied her, together with some other women from our parish.

It was the whirlwind trip.  Up on Friday (slow traffic, eight hours or so of travel), back on Sunday.

I was already exhausted from my busy week before the trip, because it included accompanying Wes to Louisville on Wednesday, taking B. to the doctor in Louisville on Thursday...so I'd traveled and been very busy the two days before....

...so on Saturday at the monastery I took three naps.  Yes, that is what I did.  I slept.  And then I slept again.  And again.

When I wasn't sleeping I was crying.  It was that sort of place and I'm in a crying sort of place in my life.

The Monastery: 

Every blade of grass, every flower, every stone in the the courtyard:  Perfection.  Nothing out of place.  Everything in order.  Even the wild growing things and the wee pond creatures at Holy Dormitian were cooperating with the orderliness of the place.  It felt like being in a slice of paradise.

And the singing and the praying...endless.

I could only imbibe snippets. 

I, the unworthy worm, was there sleeping.  Because that's how tired I was.  Nope, no guilt.  Just reporting the facts.

So that is me.

I was there to serve B.'s needs and make sure she had a nice time.  I'm learning that I need to hold her a bit more loosely, and let God do more of the holding, and just let her be herself


I got some clarity on a couple of things while I was there and had such beautiful thoughts about heaven which I came home and shared with Wes.

I think many of my tears these days are about processing the upcoming separation that Wes' terminal diagnosis has thrust upon us.  "I know you will be OK," I said to him as we were falling asleep holding hands.  "I know you will be OK, too," he answered.  We will, each of us, be held by God.