Thursday, September 15, 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 still working on it.  I don't crochet every day, but in my mind, this project is the thing that I started because he is sick, and it's for me to feel better.  I like the colors.

3. Listening to music that helps me to cry.  I have some songs that I call my "crying songs" and they really help when the tears get clogged up and won't come out.  Sometimes a caregiver NEEDS to cry. 

4. 12 step program.  I joined OA. I quit drinking any alcohol, too. Those 40 pounds I gained are gone, and some extra besides...with more coming off.  Trying to be as absolutely healthy as I can is a form of self care.  Because of the stress I am under, my body does not have the resiliency to deal with crap non-foods like sugar or junk or wine.  No more toxins.  Avoiding these stressors that I CAN CONTROL gives me resiliency to deal with the stressors I cannot control. 

5. Excercise.  I've just re-started an exercise program beyond just going for gentle walks.  I find the endorphins absolutely fantastic. I've had times when I got to a pool to swim, and times I have not.  Now I'm taking up jogging again.  Life is always better when I am working out enough to really sweat and breathe hard, because: Endorphins.

6. Going to the doctor or dentist or eye doctor.  Last February when my back went out AGAIN, I started seeing a chiropractor....and that's when things really started to turn around for me.  I was in so much pain before, and I just accepted it.  I could not walk more than five minutes without my hip hurting.  Turns out it wasn't fibro pain, it was because I needed chiropractic care.  I have noticed that when Wes is having something big going on with his health (big=scary) my back tends to flare up, because I carry my stress there.  Since I am the only driver in the family now, I CANNOT let my back go to pot again.  Same with staying on top of my other meds and health conditions:  I don't have the luxury of neglecting myself...I am needed and I need to be as well as I can be.

7. Stuff I just plain enjoy and don't need to apologize for, like reading fun books or watching a fun movie, or stupid comedy skits on is OK to zone out sometimes.  A caregiver needs that. 

Caregivers don't have the luxury of ignoring their own physical, mental, emotional or spiritual needs.  We have to actively do things to make ourselves fitter, stronger, healthier and more able...even when we have our own health challenges to deal with.  It is no more selfish to care for oneself when one is a caregiver, than it is for a soldier to do PT exercises in order to be fit and strong.  Self-care must be an intrinsic part of the role of caregiver.  

Monday, September 05, 2016

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 the surgery.

What this means: It means the first type of chemo has most likely come to the end of its usefulness. No more Temodar. Pathology report after the surgery will reveal whether or not the immunotherapy vaccines are doing any good at all...and whether Wes continues to receive those depends on that....and it will be time for the next type of chemo available to fight this beast. Fighting only buys a bit more time...this IS terminal cancer, and it seems to be God's will for us to walk this journey to its natural end. God is with us, and God is always good. Wes and I are each in a good place spiritually, although we are also grieving (as are our grown kids).

We thank all our donors from the bottom of our hearts for how much you have been helping us. The medical expenses are ongoing and surgery will be a big bump.

We are trusting God for the outcome, knowing that Wes might not recover so well this time. So we are trying to squeeze in some nice dates and get out into the early autumn nature in these next few weeks. And we hold each other. And we cry.
"Not my will, but Thine be done."

Here is our fundraising site:

Monday, August 08, 2016

...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 illness, kids with autism and chronic pain...never in my wildest dreams would I have chosen this for myself or my loved ones. 

But would I trade it in for temporal comfort, and miss out on the sweet comfort of the Holy Spirit? 

I would not.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. For as the sufferings of Christ abound in us, so our consolation also abounds through Christ. Now if we are afflicted, it is for your consolation and salvation, which is effective for enduring the same sufferings which we also suffer. Or if we are comforted, it is for your consolation and salvation. And our hope for you is steadfast, because we know that as you are partakers of the sufferings, so also you will partake of the consolation.--2 Corinthians, 1st chapter.

So here's to all the young folks who don't know it yet:  Your life will be so much harder than you imagine.  More grief, more pain, more suffering.  But God is there, with you. 

Saturday, August 06, 2016

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, and let them go, already. 

So they are my first fruits this year, in the late summer of my life.  This thought really helps me with the letting go process that I must be doing. 

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:

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. 


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, 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 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 I'd traveled and been very busy the two days before.... 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.

Sunday, June 05, 2016

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 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 their lunch satchels.  I can't remember if I did nor not.  I have no idea WHY we did that.  Picking on the weak one, I think. 

It is a terrible memory.  I did it, and I am sorry. 

The other time was a friend named Emma.  I was angry about something, and I went along with some physical teasing/bullying.  We grabbed her by arms and ankles and swung her back and forth.  Her skirt went up.  It was a bad day in her life. 

I did it, and I am sorry. 

If I could reach out personally to these people on a different continent and from a different time, I would tell them directly that I am sorry for my bad behavior.  But I can't.  All I can do is apologize publicly and trust that the principle of "we reap what we sow" will apply.  If it is any consolation, after sewing that, I reaped it, too.

My heartfelt apology is out here in the world now.  I bullied you.  It was wrong of me.  I grew up and I am sorry.