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Showing posts from 2016

Self-Care for the Caregiver

When Wes was first diagnosed with brain cancer, I promptly gained 40 pounds.  I did.  It took me about five minutes to do that. 

Since then, I've been on a journey to learn self care skills and healthy coping mechanisms.  I'm not an expert by any long shot, but I have gotten to a better place.  I have an arsenal of self-care tools that I'm using to deal with the stress of life with a partner with terminal cancer...

(These are in somewhat random order and are just what I am personally doing...others will have other ideas/experiences).

1. Prayer.  More prayer.  Sometimes when I get very very depressed I have been known to lay in bed, take a nap and listen to a recording of the Psalms.  Morning and evening prayers, goes without saying... getting to Church as often as I have the energy, surrounding myself with others who are praying and who are praying for us has been so uplifting.

2. A crochet project.  When I first got diagnosed, I started to make an afghan, and I'm sti…

Update on Wes's Brain Cancer

We have an update...months have gone by. Wes has been on Temodar (chemotherapy pill) five days out of every 28 since last February, after 12 weeks of recovering from brain surgery in October.  At that time, the neurosurgeon was able to remove all visible tumor.
 In July, his MRI results came back questionable. The doctor said that it was either swelling and inflammation (which steroids would fix) or it was new tumor regrowing at the same site where his surgery was last October. Wes opted to go on steroids for a month, and then to have another MRI for comparison. We were hoping for the best, but got bad news instead: even more growth was seen, despite the steroids.

Wes will have another brain surgery in the third week of September. That's as long as his oncologist would give him to finish a big goal at work. There's a small chance it will be sooner, as we see the Neurosurgeon on September 9th, who will tell us what he wants to do, and get Wes scheduled for th…

...Thou Art With Me...

I had the thought this morning that Wes' terminal cancer is saving me. 

I have drawn much closer to God than I would have done otherwise. 

 Since the very beginning of this grief filled "journey" I have had the 23rd/22nd (no matter which numbering system [masoretic or LXX] I use, someone will yell at me about it) in the forefront of my thoughts. 

"Yea, though I walk through the valley of the shadow of death, Thou art with me.  Thy rod and Thy staff they comfort me..."

and I do know the nearness and the comfort of God.  In fact, it is God's presence that keeps me going each day, and keeps me from falling into utter despair. 

I know that I will be OK, whatever comes, because God is with me.  God is the one holding me and taking care of me. 

And each day that Wes lives longer than expected, God be glorified.  And with each element of struggle and suffering, God be glorified. 

I sure did not imagine having a life of chronic illness, a husband with terminal illn…

The Late Summer of my Life

I was complaining to someone who complimented me that I actually felt like a middle aged hag, and she said the most wonderful thing in return. 

She said "you are in the late summer of your life.  It's not youthful springtime anymore, but you are not into autumn or winter yet, either."

What a beautiful thing to say to me. 

And timely. 

It is now late summer, and in the Orthodox Church we celebrate the feast of Transfiguration.  One tradition is to bring the first fruits of fruit harvest (or anything from the garden) to Church to be blessed and shared around. 

Well, this year, in the late summer of MY life...I have some "fruits" that are ready to go off to college, and in a very short while, I will be an empty nester all of a sudden as three of mine will be going to college all at once.  (B still lives at home with us and will for a good long while due to her autism issues.)

And the thing I was thinking of JUST this week, is that my task is to bring them to God, …

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 bei…

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 tre…

A Trip to Holy Dormitian Monastery

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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 orde…

An Open Letter to the kids I Bullied when I was a Kid

I like to think of myself as being a "good person".  I like to think of myself as being the kid who befriended the class reject in elementary school, and who sought out the misfits and the outcasts to be my friend in High School.  (I was probably a misfit and outcast myself and we banded together).  I like to remember the times I was bullied in middle school for being...new to America, for being tall...for being the new kid. 

But there's another truth about me:  I also engaged in bullying behavior when I was a child.  Twice. 

And this is my public apology. 

I don't have any excuse.  I was weak and I went along with the crowd.  I didn't START anything, but I sure did participate. 

There was a little boy name Laurence in Kindergarten.  We all ganged up on him on thew way home one day (yes I lived in a time and a place when Kindy kids walked to and from by themselves each day) and stood in a circle around him, taunting him.  Some of the kids took swings at him with …